Having a 


in Your Own 



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Strong people stand up for themselves,

but stronger people

stand up for others...


A Protest For Heart Disease Awareness?

March 29, 2018

In today's world, when a group of people want to be heard, and bring awareness to their cause, they march and protest.  There are so many these days, who can keep up?  I can't.

It reminds me of when emails first came out, and individual, personalized letters regarding an important issue got lost in the shuffle...until now.  In the world of millions of emails, a heartfelt typed, or handwritten letter gets noticed before an email.  I hope we never lose that personal touch, that one-on-one interaction and communication that truly brings people together on the same plane, especially when it comes to our health.

Heart Disease is the number one killer of both men and women over all other diseases, and all other leading causes of death (accidents; suicide; murder).  Why is it then that most people believe cancer, breast cancer to be more exact, is the leading cause of death?  It's called marketing which leads to awareness.  Signs of cancer can be seen with the naked eye...hair loss, discolored skin, and weight loss.  Signs of heart disease however, can only be seen by MRI's, echocardiograms, angiograms, catheterizations, basically all heart testing.  Rarely are the signs of heart disease seen outwardly.  Heart disease has now become the "new lonely."  

As a heart patient, I do not look sick, therefore, I am not sick in the eyes of others, sometimes including physicians.  It's very frustrating being a heart patient, but even worse for those of us who don't look sick.  We're not in wheel chairs, using walkers, we have all our hair, and do not look like we are at death's door, even though many of us are sadly knocking at it.  Getting enough heart patients involved in a protest for heart disease awareness, number-wise, would not be an issue, as approximately 610,000 people die of heart disease every year in the United States, with 735,000 Americans having a heart attack every year.  

Because heart patients may not look sick, but are sick, the fatigue, difficulty breathing, inability to walk long distances, would be a problem as far as marching in order to bring awareness to heart disease.  The jury is still out on whether or not a "sit-in" might work.  The only way to protest in order to bring awareness to heart disease, is through patient advocacy, and speaking from experience, it has been one  long road in the journey for us patient advocates.  Countless hours, days, weeks, months, years have been put in by caring, passionate individuals across the U.S., which for most is done without monetary gain or fame.  It's just in their heart to do so...pun intended.

Sadly, most of the awareness we have had in recent years, has been due to loss of life.  Not the every-day-person's life, but celebrities and pro-athletes.  Yes, their lives matter, but why should they matter more than the every-day-person's life?  It shouldn't take the death of a celebrity or pro-athlete to make us sit up and pay attention to the number one killer of men and women, but it does.  Some celebrities who have survived a heart attack, or are living with heart disease are now speaking out, but very few.  It's not as popular as breast cancer, therefore not seen as important to discuss.  In today's world celebrities want to only be seen and heard when it involves the "in thing," which gains more publicity...for them, not the disease.  I do however want to thank Queen Latifah for her involvement in bringing awareness to heart disease, and send her my sincere condolences on the recent loss of her mother, Rita Owens,  due to living with a decade long heart condition, leading to heart failure.

It doesn't look likely, but it is my hope that I live long enough to see heart disease gain the same, if not more, awareness that breast cancer has received.  Until then, I guess I'll just have to keep working on the possibility of that "sit-in."  


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Winter Depression

March 14, 2018

As winter drags on, and on, more and more people are beginning to believe in the concept of Seasonal Affective Disorder.  For years, this disorder was joked and laughed about, but many are finding it truly does exist.

The Fall Season is one filled with the beautiful colors of falling leaves, football games, and the much-welcomed cooler weather after a long hot Summer, requiring us to don those sweaters we stored away at the beginning of Spring.  For some, however, they never allow themselves the pleasure of enjoying Fall, as they know what comes after Fall...Winter.  This winter has been exceptionally long & cold, and even I, who have never had issues with the cold winter months, have experienced the winter blues.

What are the top ten signs you may suffer from Seasonal Affective Disorder:

  1.   Anxiety
  2.   Apathy
  3.   General Discontent
  4.   Loneliness
  5.   Loss of Interest
  6.   Mood Swings
  7.   Sadness
  8.   Appetite Changes
  9.   Irritability
  10.   Social Isolation


If you find yourself suffering from any of these symptoms at other times of the year, or even all year long, it could be something more serious than Seasonal Affective Disorder, and you should speak with your physician about your symptoms.

What are some of the treatments for those individuals who truly suffer, each and every winter, from Seasonal Affective Disorder?  Light therapy has been found to work, which exposes the individual to an artificial UV light in order to decrease the symptoms.  For those who can afford, and in a position to, heading to warmer pastures, spending winters south, or in a much more climate friendly environment, might be the answer.  In more severe cases, the use of medication or traditional psychotherapy have been implemented.

Never ignore any of those symptoms listed above, and never attempt to treat yourself for those symptoms.  Getting your physician involved is vital to recovery.


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Watchful Waiting

March 12, 2018

People hate to wait, whether it's waiting in line at the grocery store, or waiting for the clock to strike 5:00 p.m. signaling the end to yet another long day at work.  Now imagine waiting to hear from your doctor the results of tests that will determine whether the quality of your life will ever be the same again, or even whether or not you will live or die.  All of a sudden, that waiting in line at the grocery, or waiting for the clock to strike 5:00 p.m. while at work, doesn't seem to be so frustrating after all.

Every second, of every day, someone somewhere is sitting, waiting for that phone call from their doctor that might just change the course of their life forever.  I have been, and still am, one of those people.  After being diagnosed 14 years ago with heart disease, I continue to hear the words, "Let's just watch, wait, and see."  I want to scream back at them, "Watch and see what?  See whether I die from sudden cardiac arrest?  See whether or not I have to be rushed to the emergency room for emergency heart surgery because we were doing the infamous "watchful waiting" that so many patients are expected to adhere to?  I AM TIRED OF WAITING!!!

Your doctor will determine whether any necessary steps need to be taken in regard to tests, procedures, or even surgery, based solely off of your medical record, and your medical record alone.  You, the patient, however, will be basing the same decisions on how you have felt the last several months or years.  Everything within you knows that you are heading downhill fast with no stop light in sight, or even a yellow light to warn you of what's to come.  You know your body, yet have no voice in your continued care, or lack of.  This, is called "watchful waiting."  Well, I for one am done with watching and waiting, and am going to take the bull by the horns and define my own continued care.  This might mean a second opinion, possibly a third opinion, or more, but I won't stop until a doctor either agrees to take steps in moving forward, not remaining stagnant, in my care.

I totally understand the Do No Harm oath, but that baby works both ways.  If you perform an unnecessary procedure/surgery and things go south, you could be sued.  I get it.  Key word here in my case however is unnecessary.  I will eventually have to have this surgery, as my heart issues cannot fix themselves, only surgery can do so.  But doesn't the same oath hold true if you wait to perform the surgery and I end up having emergency surgery, having less of a chance of survival, and die?  There is risk either way.  As the patient, I would much rather have a scheduled surgery than an emergency one.  But then again, it doesn't appear that I have a say, now does it?  

I have now been told by both a cardiologist and a cardiac surgeon that I will most definitely need open-heart surgery to fix my heart defects, however, "We're just not quite there yet."  You see, I'm only at the third level, having one more magical level to go before the textbook tells them to move forward.  All the while, my body is saying, no, let me rephrase that, screaming, for them to do something and do it NOW!!!  But the textbook says...  I say screw the textbook, and make your decision based off of both my medical records, and the horrific blow that my quality of life is taking.  I am half of the equation of that decision...I am the one being cut on, and paying you to do so might I add, yet my voice remains insignificant.

If I sound angry, it's because I am...Can You Hear Me Now?

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Mental Health

March 8, 2018

We live in a world of self-gratification...a world where we want it all and want it all now!  First, this is an impossible feat, at least not without destroying our own mental health in the process.  

Everyone is in a hurry, and no one knows how to just "be still" anymore.  The Eagles song, "Learn To Be Still," lyrics speak directly to this:

It's just another day in paradise

As you stumble to your bed

You'd give anything to silence

Those voices ringing in your head

You thought you could find happiness

Just over that green hill

You thought you would be satisfied

But you never will -

Learn to be still

The world is spinning out of control, that is if you let it.  It's so easy to blame our jobs, children's extracurricular activities, board meetings, coaching, volunteering, and making time in our lives for those who need us, but the truth is we only have ourselves to blame.  We have a choice.  At some point, something has to give, before you give out!

7 Tips for Mental Health: 

  1. Value yourself:  Treat yourself with kindness and respect, and avoid self-criticisim...
  2. Take care of your body:  Taking care of yourself physically can improve your mental health...
  3. Surround yourself with good people...
  4. Learn how to deal with stress...
  5. Quiet your mind...
  6. Set realistic goals...
How do you maintain these goals?
  1. Talk about your feelings...
  2. Keep active...
  3. Eat well...
  4. Drink sensibly...
  5. Keep in touch...
Ask for help...


Be in tune with your own mind and body.  This will keep you from heading into a storm, when you can redirect your path into the sunlight.  It's like taking a huge dose of Vitamin D.  I have to admit that I don't always see the distant storm, but I am getting better at recognizing when I'm in the midst of one.  Your mind can either be the gas pedal, propelling you forward at warp speed into an emotional car crash, or it can be the brake, telling you to stop, look & listen.  Being aware of your surroundings, will enable you to be more aware of the dangers in becoming overwhelmed, exhausted, and worn out.

If you've tried all of the above tips, and find that even the first step is too difficult, it might be time to seek outside help from a professional therapist.  Mental therapy is not for everyone, but for some, it can be an amazing experience where a stranger can tell you things about yourself that not even you knew.  Most of us don't want to dig too deep emotionally, as there is often too much hurt and disappointment, and working past that hurt and disappointment takes time and a lot of hard work.  In the end, however, that peace you were seeking though other people, through material things, and sometimes through mind altering substances, suddenly appears, and we realize that we had peace inside of us the whole time.  We just didn't know how to release it.

If your mental health has deteriorated to the point of having suicidal thoughts, ACT NOW!!  Call the National Suicide Prevention Lifeline at 1-800-273-8255 for free and confidential support.  The same holds true if you are having thoughts of hurting others.  Seek help from your primary physician or a psychiatrist before it's too late.  Many innocent people have died because someone chose not to get the mental help they needed...don't be that person!

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The Life of a Physician

March 7, 2018

When I began my Blog, I, of course, spoke mainly about patient's rights, advocacy for patients, and how a patient can be heard.  In all fairness, I feel it necessary to do the same for physicians, those physicians who truly care about their patients.

Many physicians will never live long enough to pay off their student loans in their quest to become a physician, which places additional financial stress on them.  This is where some physicians get lured into the world of money rather than the world of helping people, and the reason why they became physicians in the first place.  Physicians schedules are unlike that of many other professions as their hours are not set in stone.  They have hospital rounds, office visits, emergencies all hours of the day & night, and they have families and the responsibility of keeping themselves mentally & physically healthy.  We all make choices in our lives however, when choosing a career, and when an individual makes the choice to go into medicine these crazy daily routines are well known prior to becoming a physician, just not yet experienced.

I never went into medicine because I couldn't stand the sight of blood, never giving the 12-24 hour shifts even a thought.  Put those two together, and I would have made a horrible physician!  Even though physicians think they know what they are signing up for, it doesn't become real until the reality of it all sinks in...long hours, early hospital rounds before beginning early morning office appointments often lasting until late in the evening.  And just when a physician thinks they have a day or night to themselves, an emergency call comes in, and even though they could have another physician take over for them, many don't as they have formed a relationship with that patient, and want to see it through.  

Add to all of that, a family, a house, pets, kids & their extracurricular activities, not to mention other family issues including an elderly parent in need of special attention that only a son or daughter can provide, and eventually something has to give.  Sometimes, even physicians  themselves become ill, having to cancel appointments that will somehow have to be fit in at a later date with an already packed schedule.

Yes, we pay them.  Yes, they work for us.  However, we as patients need to show compassion when compassion is appropriate for our physicians...after all, they too are only human.  I have crossed paths with some cardiologists that I have been placed in a position to question their ability to be human, but still want to believe in the common good, which includes physicians.

On one of my cardiology visits, after a nine-year relationship, I noticed that my cardiologist's eyes were puffy and red, and that she wasn't herself.  It's important that we notice these obvious signs of stress and/or distress in our physicians, both for them, and for our own sake.  In this case, I gently asked if she wasn't feeling well, and she replied that her father had passed away late the night before, yet here she was following through with her scheduled appointments like the trooper she is.  We hugged just like we had done when my father died unexpectedly.  The other sign of the coin is if your physician is just not listening to you, seems distant, angry, and is short with you, and it happens often, I suggest looking for a new physician.  They need not share their personal life and issues with you, but they showed up, which means they have to then perform or explain why they can't.  

Bottom line is, we are ALL human, and if we treat each other accordingly, then we all will get what we need and want.  For physicians it is to help their patients become and stay healthy...for patients it is for their physicians to listen to them and not just when it's convenient.  We all can do better.  Think about that at your next check-up...

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Spring Into Action

February 25, 2018

It's almost that time again.  The time of year where you clean out your winter clothes, making room for your Spring and Summer clothing.  Your closet isn't the only thing you need to prepare for the new season, which is just around the corner!  I always think I'm body-ready for those shorts, sleeveless summer dresses, summer skinny jeans, and even the dreaded bathing suit, but when I try last year's bathing suit on, not so much.

I don't have that much work to do, thanks to my mother's genetics, but it's time to spring into action, to firm up those legs, abdomen, and sagging upper arms.  The hardest part for me, and most of you, is just getting started in order to look the best, feel good about ourselves, and to do so in a short period of time.  The good news is, WE CAN DO THIS!!!  So, let's get started...

First, choose those areas you want to work on.  Next, research which exercises will benefit you the most in achieving those goals.  Pick exercises that you "like" to do, because if you don't like to do them, you won't do them, trust me.  DO NOT expect overnight success, as getting back in shape does not happen overnight, but through hard work, determination, motivation, and wanting it...you have to WANT IT!!!  If that means placing old photos of you when you were in great shape, from years ago, on the fridge, on the bathroom mirror, or on your computer, then do so.  

Dieting is much harder due to outside influences like late-night junk food commercials, lack of time, children in the home who depend on snacks, depression, loneliness, and so many more reasons.  If you live alone, only buy, and place, in your pantry and fridge those food items that are healthy, but make sure that you at least like them.  I have friends who buy healthy food they wouldn't eat if they were starving, yet they still buy it, bring it home, and believe that they're going to eat it.  They would much rather eat the soap in their shower than what they just purchased at the grocery store.  

It's much more difficult for families, as one person is buying for anywhere from 3-8 people, all with different tastes, filling kitchens with chips, soda, candy, ice cream, etc.  Kinda hard to turn down that ice cream for strawberries, blueberry's and a banana.  If space allows, create two different pantries, with one just for you...if the junk food is not right in front of you, then you are less likely to go in search of it.

Before I end, I beg both men & women to stop comparing themselves to those bodies in health magazines that grace our magazine stands...they are NOT there to help you, but to only sell weight-loss products that either don't work, or do work, but only at the risk of your health.  They also can make you think that if you don't achieve that "supposed" perfect body that you are somehow a failure.  Trust me when I say, that they, the models on display, aren't even perfect.  It's called photoshopping, and lot's and lot's of make-up...it's okay to be you, just make sure that it's the BEST YOU!!!!

Some individuals need to have an exercise coach and/or dietician point them in the right direction, and there is nothing wrong with that!  Remember...take care of your heart and it will take care of you in later years.  I wish I had more time to spend on this issue, but the rest is ultimately up to you...this is your shining moment, make it count!!! 

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What You Don't Know Might Kill You

February 21, 2018

Knowledge is power.  Lack of knowledge can kill you... literally.  Medically speaking, I have found that the more knowledge one has, the more power they have over their body and their life.  

The control of medical information used to be only in the hands of those treating the patient.  These days, this one-sided control is leaning toward the medical field letting go of that total control, and giving some of it, if not all of it, back to the patient where it belongs.  The more a patient can control their own personal medical information, then the more knowledgeable they will become about their own overall health. 

Throughout the years, most physicians believed that the patient was better off not knowing the details of their illness, diagnosis or diagnoses.  They are now learning that this couldn't be farther from the truth.  Patients need to know every detail of what is in their medical records, and learn what lifestyle changes they need to make in their life in order to have a better quality of life, or in some cases save it.  Many patients don't even realize that they have a right to copies of their medical records, including physician notes.  Your medical records are your medical records, and if a physician does not willingly provide those, you have recourse in obtaining them.  

Patients have the right to get a copy of their medical records under the federal Health Insurance Portability and Accountability Act.  If you do run into a brick wall when attempting to get your medical records, then its time to look for a new physician.  

The worst words that can come out of a physician's mouth to a patient's ears, other than "you have six months," is "see you again in six months" even when they have no idea what's wrong, choosing to take the wait and see approach.  This approach has proven over and over again to be detrimental to a patient's health, if not deadly.  If questions cannot be answered, or symptoms explained, then tests, and possibly procedures need to be performed in order to find out exactly what the diagnosis is before ever treating a patient.  How does one treat a patient without a diagnosis?  It's like never meeting your patient, who is exhibiting heart issues, but telling them they need to lose weight, stop smoking, and lead a healthier lifestyle, when they don't need to lose weight, they've never smoked, and they lead a healthier lifestyle than most.  We're not communicating.  Patients aren't speaking up, and physicians aren't listening...a sure recipe for disaster!

Bottom line...patients, speak up and advocate for yourself, or a loved one; physicians learn to listen to your patients with something more than just your stethoscope; most of all, ALL medical information needs to be accessible to not only the physician, but the patient as well...it's called TEAMWORK!!!!  There are NO winners without it...what you don't know CAN & WILL kill you!!!!    

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The Dark Side of Medications

February 19, 2018

For the most part, many of the medications I have been prescribed throughout the years have had wonderful results, with little to no side effects. For the most part. Everyone has a story or two, whether they realize it or not, about the negative side effects of taking medications, both prescribed and over-the-counter. But when it happens to you, as a patient in the hospital, the last place you would think of this happening, it gives pause to the cause. At least it did for me. Here is my story:

It began in the ER, with all the symptoms of me having a heart attack. Not unusual symptoms as most women might have, but spot-on symptoms of that of a man having a heart attack...severe pain in the middle of my chest radiating out my back, left arm numbness, profuse sweating, nausea, irregular heartbeats, lightheadedness, basically your norm for someone having a heart attack. My EKG showed a few inverted T waves of concern, but was not showing that I was having a heart attack. This by all means did not mean I did not have a heart attack, prior to entering the ER doors via an ambulance. Even though my blood pressure was not considered high, the emergency room staff gave me nitroglycerin just in case, which plummeted my blood pressure to an all-time low. Bells and whistles began going off alerting ER staff that something was wrong. I learned that day that nitroglycerin was the “go-to” drug for those patients suspected of having, or actually having, a heart attack, withstanding any other medical factors that would make using nitroglycerin a bad idea, if not deadly one. This is where that medical textbook they used back in medical school should have just been thrown out the window, as I was not their normal textbook patient. Low blood pressure can kill a patient just as quickly as high blood pressure, but many cardiologists, and those in the medical field, especially ER staff, fail to recognize this.

Sadly this would not be the only time nitroglycerin would be over-prescribed for me during my stay, after being admitted to the hospital with confirmation of having had a myocardial infarction.

Once on the cardiac floor of the hospital, and in my room, the nurse on duty hooked me up to all the usual equipment that is necessary for a heart attack patient. She then placed a nitroglycerin patch on my right arm, and although I did meekly protest after what happened in the ER, I wasn’t patient-advocate enough to make demands, in regard to my health, not just yet. Why would I? I was in a hospital after all where they were supposed to know how to care for me, the patient. My electronic medical chart which they had access to, should have made it clear that I had hypotension, and not hypertension, sending out a bold warning to all of those treating me, that the use of any form of nitroglycerin would have negative, if not devastating, side effects.

All of the normal tests for a heart attack patient were ordered and performed, and I was into my second day as a hospital patient. I kept telling each nurse, as their shifts changed, that I was feeling unusually lightheaded, to which most replied “that’s normal for what you’ve experienced.” Vitals were checked frequently, but not one nurse, or a cardiologist, appeared to be concerned that my blood pressure continued to decline with each vitals check. 

By time the night nurse came on, I couldn’t even get out of bed to use the bathroom, due to being so lightheaded.

Sometime around midnight, I pushed the button to notify the night nurse that I needed her. Thank God I did, and didn’t just go to sleep. I told the nurse that something was just not right...that I was feeling dizzy, and somewhat out of it, while lying in bed, and was concerned. She took my blood pressure again, even though it wasn’t time to. It took her several tries, as she couldn’t believe what she was seeing. My blood pressure had plummeted to 72/49, which in her words, was “ICU numbers!” She ran out of the room, called the on-call cardiologist, letting him know about my dangerously low blood pressure, letting him know she suspected the nitroglycerin patch was at fault, and asked for his approval to remove it. It was after midnight on a Saturday night, and the cardiologist was upset with the nurse for calling him at that hour for something so minor. He informed her not to remove the nitroglycerin patch and he would come by first thing in the morning.

I heard the nurse running back down the hall toward my room, where she relayed everything the cardiologist had said, and then quietly asked me, “Do you believe you need that nitroglycerin patch on your arm? Do you think it is helping you at all?” I was stunned, as I was the patient, and what did I know? Well, it turned out this nurse, and I, the patient, obviously knew more than the cardiologist on call. As she turned and was walking out of my hospital room, she looked back at me and said, “if that nitroglycerin patch somehow falls off on it’s own while you’re sleeping, oh well.” It was clear to me what she was really saying, so once she was gone, I ripped the nitroglycerin patch off of my arm, throwing it on the floor. Within ten minutes, I began feeling much better, and eventually within a half hour, my lightheadedness was completely gone. 

 The nurse, who was closely monitoring me from her desk, came back an hour after she had left my hospital room, to check my vitals. It was low, but what was considered a normal low for me...not at a life-threatening level any longer. As the nurse placed the blood pressure cuff back on it’s holder, she noticed the nitroglycerin patch was no longer on my arm, then looked at me and winked. I slept.

The wrong medications, or as in my case, too much of a medication, can have negative results, and even lead to death if not caught in time. I still to this day believe that had I gone on to sleep that night without calling for the nurse, I would not be here today. Hospitals should not be seen as security blankets, and patients need to be aware of those medications being handed out at all times, and ask questions before ever taking any medication. What’s this for? What are the side effects? Did my own physician prescribe this medication? And if you are uncomfortable with taking a medication, then don’t. You have the right of refusal when it comes to ingesting any medication into your body...even while in a hospital.

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Patients Are 50% of Equation in Medical Decision Making

February 15, 2018

I recently had my medical records sent to a cardiac surgeon, who I have never met, or spoken to, but who came highly recommended, for a second opinion.  Of course, I thought she would want to meet with me, or at least have a phone conversation, at the least.  I was wrong.  I wanted this surgery, as my condition had worsened to the point of greatly affecting my quality of life, but my voice never stood a chance of ever being heard, at least by this cardiac surgeon.  So, I did what any scorned patient would do, I responded in writing.  I am sharing that response on my blog, however, the names have been changed, and the facility name never mentioned:

Hi Edith,

I heard back from Dr. Shelton’s nurse, Barb, earlier yesterday, regarding Dr. Shelton’s decision to wait until a later date to perform the surgery.  It wasn't that the surgery was unnecessary, just that she felt it wasn't the right time.  Here is my response, since I obviously did not have a "voice" in the decision-making, and would like for you to please forward my response to Dr. Shelton regarding hers:

Dear Dr. Shelton,

Barb, from your office, reached out to me yesterday, informing me of your decision not to perform heart valve surgery at this point and time.  Barb was under the impression that she was delivering good news to me, which couldn't have been further from the truth.  She also stated, if I am correct, that you agree the surgery needs to occur eventually, and you would be willing to do the surgery at a later date, but we're just not quite there yet.  Well, I am there.

Although I greatly appreciate you taking the time to review my medical records, I respectfully disagree with your decision, as I was sadly never part of that equation in your decision of whether or not to perform the requested surgery.  It would have been nice to have met with you, or at least had an opportunity to discuss those records with you, from my perspective, prior to your decision.  Patients are often left out of the decision-making process regarding their own healthcare, which should never happen.  Thankfully, more and more physicians/cardiologists are recognizing this, allowing their patients to have a voice in their own medical care.  The U.S. is so far behind the curve of other countries, in regard to patient advocacy, that it's rarely even a consideration.  I am the one living this nightmare, day in and day out, no one else, yet I am told to hang in there until the "perfect" moment.  I say take the moment and make it perfect.

I began my journey with heart disease 14 years ago, and have learned that if I wanted to live, I needed to speak up for myself, which meant becoming my own best advocate in the process.  When reviewing my medical records, you chose to look at my life through the lens of those records alone, rather than through my eyes, by including me in the decision-making process.  The way I see it is, it's my body, I paid for it, and it's worth more than any other form of medical data.  Unfortunately, healthcare has become more reliant on what's on paper, which is often filled with numerous mistakes, than it is on compassion for the patient.  It's time to re-humanize the practice of patient care!  The word patient recognizes a unique vulnerability, one which requires physicians to be absolutely committed to them.


Part of healing is knowing that we share our journey with the people involved in our care.  

I no longer can work outside the home, I am on medicaid, and my quality of life has greatly suffered, especially in this past year.  Yet, according to the world of medicine, and the textbooks it relies on, I'm not considered the worst of the worst.  It's like being held prisoner in your own life.  I am not your textbook patient, I get that.  But I'm not going to lie about symptoms I don't have, just to fit into a medical textbook.  It would be like trying to force a square peg into a round hole.

I am tired of this watchful waiting approach...I'm tired of being tired.  As Martin Luther King, Jr. once said, "our lives begin to end the day we become silent about the things that matter."  I matter...my quality of life matters, and having this surgery matters.  I will no longer be silenced.  If there's one thing I'm willing to bet on, it's myself.  I will not let the noise of others drown out my own inner voice.  Having a vested interest, I have spent hours, days, months, and years, researching my own diagnoses, and have concluded that I can accept failure, but I cannot accept not trying. 

No one can cross the sea merely by standing and staring at the water.

I just cannot get my head wrapped around the supposed justification of waiting until the worst possible moment before taking action on a health issue that has no hope of ever resolving on it's own, or with medication.  Wouldn't it make more sense to fix the issue now, while I'm younger and as strong as I can be under the situation, than to wait until I'm older, weaker, and stand the possibility of having additional medical problems down the road?  Many cardiologists today, are taking a more proactive stance as to when to perform mitral valve surgery, opting for moderate level mitral regurgitation, rather than wait until the situation rises to the highest level, severe, as they are noticing better patient outcomes. 


The Society of Thoracic Surgeons states, "a study found that a more aggressive approach to treating degenerative mitral valve disease, using earlier surgical intervention and less invasive techniques, is more beneficial to people than watchful waiting."  SCAI adds, "if you are diagnosed with moderate (grade 3) to severe (grade 4) mitral regurgitation, your doctor may recommend mitral valve repair or replacement."  Brigham and Women's Hospital states, "If mitral valve disease is left untreated too long the heart may become damaged and the surgery is not going to give the full benefit to the patient.”

I may not be a cardiologist, a physician, or even a nurse, but I also did not just fall off the "turnip truck" as they say.


I am a trained National Patient Advocate; also trained and certified by the Mayo Clinic regarding the issue of Women & Heart Disease; have testified to members of Congress in DC; worked for two years with the Department of Defense's Medical Research Team out of DC; am a member of the USA Patient Network out of DC; provide presentations both locally and nationally; written freelance articles on heart disease/patient advocacy for magazines; author of the book Can You Hear Me Now: or do I need to yell into your stethoscope?; participated in Clinical Trial Symposiums in DC regarding Heart Disease, as well as participating as a patient in a clinical trial out of Cedars Sinai Women's Heart Center in LA; and can be seen in two YouTube videos: WomenHeart Champions 2011; and Make a Difference Through The Legislative Process 2015.  Being a patient is hard work.

I'm not expecting you to change your decision, as I have found throughout the years, physicians rarely are willing to allow a patient's voice to have any impact on their decision.  I only wanted to let my voice be heard, as well as documented.


Cynthia S. Brown

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February 14, 2018

Valentine's Day is a day set aside to let others know how much you love them.  Heart's come alive and Love is in the air!  Flowers are sent, dinner reservations are made, and candies are handed out.  

Since being diagnosed with heart disease fourteen years ago, when I see all of the displays of hearts on Valentine's Day, it only reminds me of just how much harder we must work at bringing awareness to Heart Disease, the No.1 killer of both men and women.  I let my family and friends know how much I love them on Valentine's Day, but I also take that time to remind them to take good care of their heart: get exercise, eat healthy, stop smoking, and find ways to destress.

So, let your loved ones know just how much you love them on this national day of LOVE, but also take the time to remind them to take care of their hearts, which is the BEST gift of all...

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Mama Said There'd Be Days Like This...Mama Said

February 5, 2018

In 1961, the Shirelles were unaware just how prophetic the words to the song Mama Said, written by Luther Dixon and Willie Densen, would be for those of us decades later.  I was young when this song came out, and loved it for the beat.  As Dick Clark would say on American Bandstand, I gave it a 10 for the beat.  I had no idea how true those words, "Mama said there'd be days like this, mama said, mama said," would ring so true much later in life.

Anyone who still has a pulse, now understands that yes, there are days like this, yes there are, yes there are!  Life has become so stressful, that suicide rates are at an all-time high.  I recently had one of those "days like this," and even though I knew if I would have just read something positive, take a walk, ate something healthy, just take a break from it all, my stress level would have greatly decreased.  I know this, which puts me way ahead of the curve of most who don't know what to do, but some days it's hard just to breathe, literally, and this was one of those days.

I have plenty to be stressed about, just like everyone else, but my health issues are the ones that take me to my knees, just like the other day, which when you think about it, isn't a bad place to be on a bad day.  Bad health days are like bad relationships that you can't break free from no matter how hard you try.  I can get past the financial, the family drama, the tragic news of the day, and still function, but give me a bad health day, and I'm down for the count!

I know there are others out there in the world that can relate to what I'm saying.  What can make a bad health day even worse, is when a friend tells you that all you need to do is get out and party a little bit.  Are you kidding me?  I can't even physically get off the couch, with the exception of going to the bathroom, and if I'm lucky, getting something to eat.  I know they mean well, but Mama said there'd be days like this, and Mama was soooooo right.  On days like this, I just have to wait it out and hope for a better tomorrow.  Sometimes that happens...sometimes it doesn't.  Mama didn't say anything about that. 

Tomorrow, I'm going to download Mama Said off I-tunes, and play, and re-play it...and if it's a good day I'm going to sing and dance my ass & stress off...Mama Said, Mama Said...  

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Best Medicine...Pets!

February 4, 2018

Family pets have long been part of the family unit, but it wasn't discovered until years ago that pets can also have a healing affect on many diseases and mental illnesses.  If a dog could make a crying child stop, and a cat make an elderly person less lonely, then any type of animal has the ability to help those individuals who have chronic/terminal illness, as well as those suffering from mental/emotional illnesses.

Today dogs are used as seeing-eye dogs, have become part of police canine units, as well as being utilized in the military, with many of them becoming heroes in the process.  Dogs have taken a bullet for an officer, led the blind out of a burning building, and saved many a soldier.  Recently, dogs have been recognized as emotional support dogs for the lonely, those who suffer from anxiety and/or depression, allowing them in restaurants, on airplanes, and in places where animals had never been allowed to tread before.

Cats bring comfort to many homebound individuals as they are much easier to take care of than a dog.  However, due to cats having a greater possibility of bringing on an allergic attack in a person, have not been fully accepted as an emotional support animal.  I am severely allergic to cats, and found myself on a plan one evening, when all of a sudden my ears and throat began closing up, and my eyes began to water.  I pushed the button for the flight attendant and asked if someone on the plane had a cat, and was told yes, two rows in front of me.  I quickly, before my throat closed all the way, told the flight attendant I was allergic and having severe symptoms...one of us would have to go!  The owner did not want her cat placed in the cargo area where some pets are kept during the flight, and after a few other passengers began complaining of symptoms, she left the flight.  I don't dislike cats, but I'm also not willing to die for one.

Which brings us back to dogs being the most sensible approach when discussing pets and medical conditions.  Rescue dogs are the best, as they need the patient as much as the patient needs them.  There's a bumper sticker, I've seen on many cars, that states, "Who rescued who?" which is a prefect description of a patient taking in a rescue dog.  Exactly who rescued who?  

Other animals, which are less common, but have the same results are horses, and aquamarine animals.  Horses have helped many children with emotional problems i.e. down's syndrome, ADHD, and autism.  Children with emotional problems appear to have a connection with dolphins...it's as if they understand each other.  It's a beautiful thing to witness.

I can no longer work outside of my home, which means that I work from home, and live at home, and often feel closed in and lonely.  Even though my landlord was adamant that no pets be allowed, they did let me try out a rescue dog.  Sadie lasted a week, as when I had to go to the doctor one day, and to the hospital for testing another, she barked nonstop, annoying my neighbors and local businesses.  Yes, she was that loud.  I had to give her back, to the lady who had initially rescued her, at the end of the first week.  Sadie has since been re-rescued, again, and can bark all she wants, as her new home is in the country.  Thankfully, I live in a small, quaint town of 2,000, with most of those 2,000 having dogs.  I get to enjoy them when I take my walks or sit on the bench outside my building, so all is not lost.

I strongly encourage emotional support animals for those  who are in need...in most cases, you'll find that you have  rescued each other.  

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Living & Dying Alone

February 3, 2018

Living alone is one thing, but dying alone is another.  Living alone has it's advantages and disadvantages.  Dying alone has no advantages, only disadvantages.  There are similarities in some cases however.  One can live with someone who doesn't care for, or love, them, which is a loneliness worse than actually being alone.  In this situation, dying would work the same way...even if that person is by your bedside, you're in all actuality still alone, and there's will be the last face you see.

Living with a chronic and/or terminal illness while living alone has it's advantages and disadvantages in that the advantage is one doesn't have to worry what another person is thinking or feeling about how their illness has changed, not only their life, but the life of another.  In my particular situation, I wasn't alone when first diagnosed with heart disease, but I might as well have been.  My now ex-husband did not look at my diagnosis as much as life-threatening to me, as he did life-changing for him.  He resented me for my illness, as our lives rotated around doctors visits, tests, procedures and sometimes surgery.  There was even a part of him that was jealous as to the attention I was receiving regarding my heart issues.  I know this, as one night after yet another heated argument about my health, he screamed out at me, "everything is about you...about you and your heart...everyone wants to know how you're doing but never asks about me!"  He was right.  Everything had become about me, even though I would have gladly given up my diagnosis to lead a normal life again.  We were caught between a rock and a hard spot, so I wiggled myself free and have now moved on with my life, as a single person.

I still get lonely, especially on one of my bad days, but it's a much better loneliness than when I was married to someone who hated my illness, making my life harder than it already was.  What makes the loneliness even worse, is those family members and friends who don't understand, or just don't want to, how much I need them.  To hear from them.  To have them visit.  Illness is a full-time job for me but doesn't mean it has to be for them.

My dad's worst fear was that I would end up alone later in life, just as he had done.  Neither he, or I, even gave dying alone a moment's thought.  Thankfully, he had all his children with him when he passed, and I hope that I will as well.  Having chronic illness and an incurable lung disease, I find myself thinking, not dwelling, just thinking, about what it would be like to be at home when tragedy strikes, laying there dying alone.  I'm surely not worried enough however to want my ex back, or to remarry, but living alone does not afford me to have the security of having someone there to do CPR, call 911, or just hold my hand.  

Should I find myself lying in a hospital bed, having just been given the news I might have an hour left, I have to wonder if I would rethink the ex-husband, or why I didn't remarry, topic.  I hope I don't have to find out.  I hope that when it comes my time to move on to the "other side," that I see the face of a loved one here on earth, before heading off to see the face of The One who has never stopped loving me...


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February 2, 2018

Don't forget to wear your RED today in support of Women & Heart Disease Awareness!!  Let's show solidarity in helping to bring awareness to the No.1 killer of women by hopping on the Train of Red!!!

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February 1, 2018

It's February 1st, the beginning of Heart Disease Awareness Month.  Twenty-eight days of wearing red, presentations being made across the U.S., cities lighting up their buildings with red, magazine articles on heart disease, with people actually discussing a disease that many know nothing about...Heart Disease.

February is also known for Valentine's Day, which often gets confused with Heart Disease Awareness month... with so many hearts, how does anyone know which one's stand for which celebration?  Valentine's Day is meant for love, romance, candlelight dinners, engagement rings.  Heart Disease Awareness Month is about raising awareness of the No.1 killer of both men and women, but also involves love and relationships...relationships between patients and their physicians.  

As I walked through Walgreen's the other day, I located the manager, and asked why there wasn't more products regarding heart disease, and he proudly replied that there was 3-4 rows of products, and then proceeded to lead me down all the rows of Valentine's Day gifts and candies.  I said, "No, I mean like t-shirts, hats, water bottles, socks, scarves, headbands, wristbands, etc. meant for February's Heart Disease Awareness Month, just like Walgreen's does for Breast Cancer in October, and even sometimes throughout the year.  As he stuttered, I told him that wouldn't it be great for Walgreens and other pharmacy-related stores i.e. CVS, Rite-Aid, to approach their corporate office about purchasing those heart disease products (red dress pins, t-shirts, hats, sweatshirts, and much more) for their store for their customers to purchase.  After all, it is the No. 1 killer of both men and women over all cancers, all other diseases, and all other leading causes of death (murder; suicide; accidents) in the U.S.  

Sadly, I lost this manager somewhere after the words Valentine's Day, thus why we have Heart Disease Awareness Month.  We have so much more work to do in raising awareness for a disease that kills more women and men  than any other leading cause of death.  Please donate to the American Heart Association, or some other worthy heart-related organization; wear red on Go Red Day, which is tomorrow; do research; educate yourself and others as it could just be your life or that of a loved one's that is affected, or possibly even lost.  Candy?  Flowers?  Romantic Dinner?  Life?  The choice is yours.

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January 31, 2018

Hope.  Such a small four-letter word, but very powerful when having it!  The one thing that all chronic and/or terminal patients have in common is holding onto hope.  And why shouldn't they?  Life isn't a dress rehearsal, it's the real deal, and if a patient who has received a devastating diagnosis still has hope, who are physicians to deny them that hope?  

There is a very thin line between giving someone hope and giving someone false hope.  As long as there is life, there is hope.  Some physicians however refuse to give a terminally ill patient any hope at all, and they might be right, but what can it hurt then to give a patient hope, making their last days more positive ones, rather than dreaded ones.  It can't.  "We have this hope as an anchor for the soul, sure and strong." (Hebrews 6:19 NCV)  This is hope.  False hope would be a physician not telling a patient they are dying, giving the patient a false sense of having a future, when in reality they do not.

Mirriam-Webster's Dictionary defines Hope as "to want something to happen or be true."  Everyday, everywhere around he world, people are hoping for something to happen...to be true.  Hoping for food; for a war to end; to come back home safely from a far away war-torn land; to be free, and much more.  These types of wishes are formed demographically, but the one hope that crosses all boundaries is the hope to live.  Hope isn't just for those who are white, black, mexican, asian, japanese, chinese, etc., and it's not just for the poor, the middle class, or the wealthy.  It's there for the taking by all...one just has to reach out and grab on to it and hold on tight, as the road of hope can be a bumpy one, especially when it comes to health.  Without our health, we have nothing, and can do nothing.  

Many individuals wake up every morning and think about one thing...money.  They set their life goals by the standard of the level of their wealth.  They put hours, days, months, years into obtaining wealth, but in the end often lose their health in the process.  There is nothing wrong in wanting to be prosperous, it just should never be at the expense of their own health, or that of other's health.  Attorneys have to log in so many hours to make partner; physicians are limited to fifteen minutes per patient, no matter the illness, resulting in more patients and longer hours; or the mailroom clerk who dreams about being the CEO, ignoring his family, friends, and health, in his or her dream to become CEO; and the list goes on.  I personally know of individuals who are either millionaires or billionaires, and have also personally witnessed their unhappiness in life, and their health fail in their quest for profit.  They turn around one day, and the wife/husband have left, their children no longer speak to them, their hair has either receded or been lost along the way, they no longer no who their true friends are, and they can't trust anyone.  Worst of all, their health has suffered the most.  This isn't a life of hope...it's a tragedy. 

As my own fight with heart disease and pulmonary hypertension wars on, hope is what I hang on to.  It's the reason why I continue to research, ask questions, look for other options other than just sitting here and waiting to die.  My grandchildren give me hope.  Hope that I will get to see all six of them graduate, that I will get to see a wedding or two, that I just might even be around to witness the birth of my first great-grandchild.  I have hope in a better tomorrow for them, and want to experience them experiencing their own tomorrows.  This is my hope.


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Medical Office Staff

January 24, 2018

For the most part, I have been very fortunate with the medical office staff that comes as part of the package when  hiring a doctor.  For the most part.  

Just recently I called to have my medical records from the past year, and only the past year, sent to a clinic, in regard to possible heart surgery.  I had to keep repeating myself, as most of the time when she repeated back to me what she thought I said was incorrect.  I was already stressed about my health, now I had  to deal with someone who was incompetent at best.  I remained nice, but firm, and ended the call with my normal "have a great day" send off.  The clinic contacted me letting me know that they had received my cardiology records, but it wasn't only for the past year, but for the past twelve years.  I found myself apologizing for something I didn't do, explaining that I was very clear about the clinic only needing the past year's medical recordsThe clinic was very understanding, and said that they would locate where the one year mark began and where it ended, then put the other records to the side.

Several years ago, I had a situation where I tried explaining why I needed to see my cardiologist, but instead was referred to the nurse who would return my call.  Two days later I received that call back, just to hear that she would have to discuss my symptoms with the nurse practitioner and get back to me, which took another day.  Almost four days later, I was told to come in the next day, but refused the offer due to no longer experiencing those symptoms prior to my first phone call.  It's called  the "phone game" many of us  played as young children, with the only difference in my case being that by time the nurse practitioner called me back, she had the correct information, but it was too late.  At least when we played the phone game as children, the last person to get the message and relay it, did so in a timely fashion.

Miscommunication between staff who first take a medically-related phone call, or has a patient standing in front of them, and the doctor, runs rampant among the health care community.  There's no one reason why this occurs.  Some are untrained, many understaffed leading to overworked, and then there's those who just don't care enough to get it right.  The worst are those tweeting while listening to the patient.  It's true.  I had it happen to me, and I was face-to-face with the young girl behind the counter.  It was imperative that I pick up my medical records, in order to hand over to another doctor for a second opinion.  I even called first, before heading out, to make sure that they were at the front desk waiting for me, and was told yes, they were there.  I got to the office, and behind the counter were three front office staff members, two of who were standing, talking and laughing amongst themselves, and one directly at the front window, who had her head down texting, with a long line of patients before me.  When it was my turn at the counter, after several minutes of silence, I made the typical  throat-clearing noise, and she finally looked up.  I was in the middle of telling her what I was there for, which was just a quick pick-up of my medical records, when she bent her head down and was once again texting.  I firmly, well, ok, loudly, scolded this girl, told her to get off of her phone, and to do her job!  With a long line forming behind me at this point, I then looked at the two girls still standing there doing nothing, and told them they could talk after work, but right now there was a line ten-people deep and break was over!  I mean, who needs to pay for a stress test with all we, as patients, have to endure in order for someone to just hear us.

I began this blog on a positive note, and will end it the same.  I can say that I have had the distinct privilege of connecting with medical office staff, who take their jobs very seriously, and do them efficiently.  I've even had a few go over and above their normal job duties just in order to make sure that they understand what I am telling them, and what it is I need from them.  To those medical office staff members, and you know who you are, I both thank and applaud you... 


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Quality of Care Over Quantitiy...or is it the other way around?

January 22, 2018

All of the issues surrounding health care these days, has shaken the medical community to it's core. Most patients have no idea the degree of negligence within the healthcare system today. We have right to life marches, protests of police brutality, women’s rights marches, but rarely even notice the cracks in the wall of healthcare, due to patients and their families being too busy trying to fill them. It’s like attempting to find a tiny dent in the wreckage of a too-mangled vehicle to recognize exactly what it is.  Medical error is the third leading cause of death in America today.

We’ve lost our way.  Yes, there has been a “cleaning of house” of sorts, but someone needs to bring out the heavy duty equipment necessary to undo the damage that’s been done to healthcare. A dust mop and cleaning rag will no longer work. There is an arrogance, indifference and disregard for patients on every level, that far surpasses anything that physician’s of past could ever fathom. Finger-pointing has come full circle, leaving everyone confused and anxious.

The question becomes this. What can we, as patients, and as caring physicians, do about this downward spiral in the quality of care given to those deserving patients and their caregivers? Government requires that a specific number of deaths must occur at a dangerous intersection in order for there to be any constructive changes put into place. How many patients have to die before we get it together, allowing the voices of patients everywhere to be heard?

I’ve always been an optimist, but at this point in time, I find myself becoming more and more pessimistic about living long enough to see any positive changes occur within the medical community. Money talks, and with those high-volume, big dollars paid out to BigPharma, government employees, CEO’s of large medical corporations, and many more, how does a patient’s voice ever overcome that of the sound of Chaching, leaving patients powerless to save themselves, or the one’s they love.

In an earlier blog I told the story of how my father needlessly died from a botched colonoscopy, due to the gastroenterologist wanting to use his shiny new piece of equipment, which he had only used on pieces of meat in his office, and never on a human being before. He also, had only been trained by the sales rep in his office prior to utilizing this new piece of equipment on my unsuspecting father. During the lawsuit faze, I found out that this gastroenterologist was also a partner at the very same surgery center where he performed the colonoscopy on my father. This was without a doubt a conflict of interest, among other disturbing facts, yet we lost the lawsuit due to my father’s age, 84, yet still golfing two-to-three times a week, still driving, and the overwhelming fact that the defendant was a physician. So many individuals continue to hold physicians in the highest esteem, that is until something like this happens to them, or one of their family members. There are good physicians, and there are bad ones, but for most people it’s all hail the mighty physician, no matter the outcome.

Withstanding my own fight with my my own health issues, I would be doing a disservice to my father’s death, at the hand’s of a greedy physician, and an overzealous pharmaceutical rep and his company, should I choose to take the easy way out, and stop fighting. I choose to fight for better healthcare in honor of my father...not so much for his death, but rather his life.

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A Writing Sabbatical...Of Sorts?

January 15, 2018

My multi-tasking has finally caught up with me.  As they say, I have too many irons in the fire!  I love writing in my blog, however, when seven days have passed before you realize you haven't written in your blog, something has to give, and for now, it will have to be my blog.  

I am in the middle of re-writing my book Can You Hear Me Now: or do I need to yell into your stethoscope?, and if I am to meet my self-imposed deadline, I need to kick it into gear...high gear.  I might have a blog here and there, but they will be short ones.  Don't give up on me...I promise to be back and writing blogs as soon as possible.  

Thanks for understanding, and until next time, remember to take care of yourself, and your loved ones!

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Electronic Medical Records

January 8, 2018

When I first found out that my cardiologist's group was working to incorporate an electronic medical records system into what they offered, I was ecstatic.  No more requesting my medical records by filling out a form, then going to her office to pick those requested records up, or waiting for them to come in the mail.  It wasn't long before my primary physician's group followed suit.  I'm somewhat technologically challenged, but even I could maneuver through both of these systems.  It was a miracle.  

I no longer had to sit and wait until I received the results of my blood tests, either through a physician's phone call, or by mail.  My blood tests are now read, and already online usually by the end of that very same day.  Sometimes, even additional test results were becoming available also the same day, or the day after.  It was nice to not have to sit over a weekend stewing about what my test results were.  

There was even a messaging section where patients could ask their physician(s) a test result question, an emergency question, as well as a non-emergency question.  Thankfully, I have never had to utilize the emergency question option, but have utilized the other two, receiving an answer with 1-2 days.  There are far too many other options available on the electronic medical record system to note, but this new system has definitely been a plus!

After using the electronic medical records from my cardiologist's group for close to 4 years, I am now, however, running into issues.  I took issue with an echocardiogram I had performed before seeing my cardiologist immediately after the test was performed.  I let my cardiologist know that either there was something wrong with the echo machine, or they rushed me through it, as I was done in record time, and the echo tech kept repeating she was having difficulty seeing those areas she was attempting to focus on.  Having had a lot of echocardiograms, I knew it usually took a while, but this time I was out of there in a record 20 minutes.  I was not feeling good about it.  After discussing this with my cardiologist, I felt that my experience earlier was being disregarded, and I left with an empty feeling.

After each and every echocardiogram I had prior to the one that specific morning, the results always showed on my electronic chart by the end of the day, however, not this time, nor the day after, or the day after.  Still to this day, one month later, there is not even a mention of this echo result on my electronic medical chart under testing.  I have questioned. and then questioned again, all to no avail, which leads me to believe that I was right about something being wrong that day regarding how my echocardiogram went.  

This has lead me to believe that I can no longer count on my electronic medical records to provide me with my own medical information.  I have since had a stress echo, and although the test at least appears under testing in my electronic medical chart, it gave no results, only stated that "This result cannot be displayed in 'Chart'.  To get the result contact the ordering provider."  So now, I'm beginning to wonder just how reliable this electronic medical record system really is, and I would hate to think that the cardiologist that I trust with my life, and hold dearly, is withholding medical information from me.  That would just break my heart, even more than it already is broken :( 

I have since gone over every portion of my own electronic medical records, finding numerous errors, leaving me even more disenchanted with this supposed new and improved way of getting and reviewing one's medical records.  I will be investigating this more, and will update my blog in order to share with my readers how my investigation is going.  I thought I had my career in left law enforcement behind me when I retired...guess not. 

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What Is Pulmonary Hypertension?

January 6, 2018

People are so quick to assume when you tell them you have Pulmonary Hypertension (PH), that you have Hypertension, which is the elevated blood pressure in the arteries of the heart. Pulmonary Hypertension is high blood pressure that affects the arteries in your lungs and the right side of your heart.  'Unlike regular Hypertension, PH occurs when the arteries in the lungs become blocked or narrow, making it harder for the heart to pump blood through them.  This raises the blood pressure in the lungs and causes the heart to weaken, which may eventually lead to heart failure' (healthprep.com).

I had never heard of Pulmonary Hypertension until my cardiologist stated she thought that I had it.  After having a right catheterization performed, and going through what is called the six-minute walk test, it was confirmed...I had the beginning stages of PH.  My PH is what is called idiopathic, meaning I had the disease for unknown reasons.  I had no underlying illnesses which could have caused my PH.  Actually, I didn't fit the medical textbook of what a PH patient might look like on the outside, as I had always led a healthy lifestyle, which included being a non-smoker.

It was 2011 when I was diagnosed with PH, for which there is no known cure, and was placed on a medication that stabilized me for four years, and then one day it just stopped working, leaving me unusually out of breath and extremely fatigued.  My cardiologist had me try numerous other medications known to be effective in stabilizing PH, but in my case, I was unable to tolerate any of these other meds, and have now gone for over two years without any medication.  Life expectancy among PH patients, without treatment, is 2.8 years on average, 3 at best.  I don't get freaked out about this, as I just get up each and every day thanking God for another day, eat healthy foods, exercise as much as my body allows for, due to my PH and heart issues, and do everything I can to keep stress out of my life.

'Other PH diagnoses can be found when there is a 'rise in blood pressure that is caused by changes in the cells that line your pulmonary arteries.  These changes in the pulmonary arteries can reduce or block blood flow through the blood vessels.  This makes it harder for blood to flow, raising the blood pressure in the pulmonary arteries' (www.mayoclinic.org).  Genetics; congenital heart disease; certain drugs i.e. diet pills, or illegal drugs; and connective tissue disorders i.e. scleroderma, lupus, HIV infection or chronic liver disease (cirrhosis).  There are many other causes of PH, so let's discuss the symptoms of PH to see if there is any reason for you to believe that you have PH, or are at danger of being diagnosed with it.

'The signs and symptoms of PH in it's early stages might not be noticeable for months or even years.  As the disease progresses, symptoms become worse.  Pulmonary Hypertension symptoms include:


*Shortness of breath (dyspnea), initially while exercising and eventually at rest


*Dizzinness or fainting spells (syncope)

*Chest pressure or pain

*Swelling (edema) in your ankles, legs and eventaully in your abdomen (ascites)

*Bluish color to your lips and skin (cyanosis)

*Racing pulse or heart palpitations'


I have all but two of the symptoms noted...no swollen ankles/legs/abdomen; no bluish color to my lips/skin.

If you have any of the symptoms above, you may want to discuss those with your primary physician, or your cardiologist if you already have one.  Having one or more of these symptoms does not necessarily mean that you have PH, but it's better to be safe than sorry.  I had no idea what Pulmonary Hypertension was until I was diagnosed with it.  And when I look back on those symptoms I had for years before my diagnosis, I wish I would have had this information and list of possible symptoms of PH.  My advice..Don't Panic...do be smart however, and seek medical advice.  If you have already been diagnosed, or are diagnosed in the future, with PH I want to leave leave you with this message... THERE IS HOPE!!!  Everyday new medications are being tested through clinical trials, and there is hope of new treatments for PH on the horizon.  The Pulmonary Hypertension Association is an excellent resource when researching and educating yourself on PH (https://phassociation.org).

Don't EVER give up, otherwise all HOPE will be surely be lost...

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Is It A Cold Or Something More?

January 3, 2018

It's that time of year again, and this year is already a doozy!  Record low temperatures across the U.S.  Tallahassee, Florida even had snow today.  In the years since I was old enough to remember, I don't remember a winter being this cold ever before, but maybe I'm just getting older and more cynical?  This year's New Year's Eve ball drop in New York City was the second-coldest recorded, 9 degrees with a windchill of 4 below zero...the number one spot being -1 degree New York City, just last year during the ball drop, garnering the title of coldest ball drop in New York City.

How did other states fair?  Only Hawaii has escaped a record low of below zero during these winter months.  The coldest recorded low was in Alaska in 1971 at -80 degrees.  I've always wanted to see Alaska, but if I ever do get the chance, it definitely won't be during the winter months!  

There are numerous health risks to take into consideration when heading out during these unusual, frigid temperatures, with Frostbite being number one.  Frostbite can be extremely painful, and in rare cases there have been individuals, who after being out in the frigid cold for extended periods of time, have lost fingers, hands, feet & toes.  Wearing the proper winter gear can help keep this from happening to you.  Insulated clothing, from undergarments to gloves, are highly suggested.  Fashion shows are for stages inside warm buildings, not outside in subzero temperatures.

There is an increase in the number of heart attacks that occur during the winter months, and doesn't have to be in subzero temperatures, just temperatures that are low enough to lower your body temperature.  Do not shovel snow unless there is no other way...just remember to take short breaks, and use caution when going from outside to inside repeatedly, as it becomes more difficult to regulate your body temperature.  When outside make use of those winter hats, gloves & scarves that you got for a Christmas gift.  You can thank Aunt Edna later!

And then of course tis the season to get sick with a cold.  Or is it the flu?  How will you know the difference?  Winter is the time for more colds, and the dreaded flu virus, than any other time of the year.  

The common cold 'actually favors colder temperatures by invading your nasal passages and replicating more rapidly as the temperature falls' (www.everydayhealth.com).  The fact that we then walk into our home, offices, get on airplanes, and seek shelter inside someplace warm, makes it even worse, as we take the chance on spreading the cold virus to others.  Wash your hands frequently, and stay inside as much as possible.  Contact your physician if over-the-counter medications don't seem to be working.  

Many individuals get a flu shot at the beginning of the cold and flu season to ward off the flu.  I'm not one of those, but I'm the exception to the rule.  My body has always taken an opposite defiant stance against medications, including flu and pneumonia shots.  Make sure you discuss these types of shots with your physician, as every person is different when it comes to adverse effects.  The flu is a viral infection of the respiratory tract that affects the nose, throat, and sometimes lungs' (www.everydayhealth.com).  Unlike colds, the flu may carry serious health risks, especially if pneumonia sets in.  The best way to avoid the flu is to wash your hands frequently, stay away from others who have it, and with your physician's permission, get a flu vaccination.

When in doubt, ask.  Treating a cold is different from treating the flu, and only your physician can prescribe the correct medications and treatment, as they will be the ones diagnosing you.  When unsure what to do, call or visit your physician...always err on the side of caution.

As Dean Martin crooned... Baby it's cold outside!!

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January 1, 2018

May your New Year be filled with many Blessings, Peace, Love, Joy & Good Health....

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Seeking a Second Opinion

December 30, 2017

Seeking a second opinion from a doctor other than your own doctor of twenty years in no way means that your doctor is wrong about their diagnosis or treatment of, just that you may get this gut feeling that you'd like to hear another doctor's opinion before moving ahead.  A second opinion will do one of two things.  It will either confirm that your doctor was correct in his or her diagnosis and suggested treatment, or it will confirm that the gut feeling you experienced was spot on, and the diagnosis needed to have a second pair of eyes on it.

There are actually some doctors who are offended that you would even begin to question their integrity as a physician...after all, they did go to medical school.  It's not about integrity, but about making sure that the decision being made is the right decision.  It is your life, and you have every right to question the doctor, just as you would any other individual in any other type of public service being provided.  Doctors are not above the fray of making questionable decisions, and if they are a good doctor, they will support you in your decision to seek a second opinion.  What are they afraid of?  

I actually just had this situation in regard to my heart issues.  I have been a "patient" patient for several years now, as we did what the medical world refers to as "watchful waiting."  We were waiting, while watching my mitral and tricuspid valves worsen, to what is considered the "moderate" level, one level down from "severe," at which time most cardiologists then decide it's time to go in and either repair or replace the valves.  More and more cardiologists these days are choosing not to wait until valves reach the severe stage, opting for proactive, rather than reactive, surgery.  I agree with these cardiologists.  I'm the one living this, and I'm tired of being tired all the time, and knowing that my body is failing me during this watchful waiting period.  

After what was a somewhat contentious visit following an echocardiogram, my cardiologist recognized that I was under extreme duress, and had reached the point of wanting to do something, anything, but sit back and wait until I was considered severe in nature.  I actually began crying I was that upset...something I never do.  She suggested a stress echocardiogram in the next couple of weeks, and would have another cardiologist in her group read the echo, giving his or her opinion.  She also suggested, that I might want to visit a clinic, in order to get a second opinion from a cardiac surgeon.  THIS is the sign of a good doctor!  Not afraid of having her decision overturned, should that be the case.  The cardiologist who read my stress echocardiogram initially was leaning toward agreeing with my cardiologist, however, after much discussion, with me pleading my case, he changed his mind, and actually admitted he had not looked at his decision from my, the patient, perspective.  He then suggested a cardiac surgeon at the Cleveland Clinic who might be willing to not only repair or replace the mitral and tricuspid valves, but also the two remaining congenital heart defects that remained.  

After this cardiologist spoke with my cardiologist, the decision was made to refer me to a cardiac surgeon at the Cleveland Clinic, one that this cardiologist knew and respected.  With this news, I felt as if the weight of the world had been lifted from my shoulders.  Although I knew that this cardiac surgeon may not want to perform surgery, I was at least getting the chance to once again plead, appeal, my case as a patient.  It's not every day that a patient wants, and requests, to have open-heart surgery, but after much research, and soul searching, and living a lifestyle that wasn't much of one, I truly believe that this could be the answer to my fatigue, my pulmonary hypertension, and many of my other symptoms.  I recognize the risks involved, and am more than ready to move forward.  Life is full of risks each and every day that we wake up and move on with our day.  These risks I have no control over, but electing to have open-heart surgery I at least knew what to expect.  There is also the chance that all valves and congenital issues could be repaired/replaced, and none of my negative symptoms go away as expected.  I am also ready to face that, because at least I can say tried...I did something about the life I was having to live, day in and day out.  

My body.  My decision.  I'm the one who has to live with whatever the result is, and I am ready to do so.  I say...BRING IT!!!!

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Unregulated Medical Device Industry

December 29, 2017

I just received the book I ordered for myself as a Christmas gift today..."The Danger Within Us" by Jeanne Lenzer, detailing one man's journey, and battle, with America's untested, unregulated medical device industry, and how he survived it all.  Some might think this is an odd gift to get oneself for Christmas, but it makes perfect sense to me.

Having had personal experience in the medical and healthcare world, I have a vested interest.  The things I have personally experienced, and the stories of others who have suffered at the hands of an unregulated government industry, have more than motivated me to become involved in many aspects of helping to make changes where changes need to be made...and trust me, there's much to do in this area.  One person alone cannot make that change.  It will take a "village" of patients who remain healthy enough to get involved within all government agencies, especially the FDA, in order to turn things around.  Complaining only, does nothing to help.  Thoughts need actions, and people are necessary for those actions necessary in creating the change within the medical industry on all fronts (medical devices; pharmaceuticals, clinical trials, etc.).

Fighting large, wealthy companies and agencies is not an easy task by any means, but it can be done, and has been done & won!  Through persistence, research, letter-writing, requesting meetings, testifying to members of Congress, writing letter/op-eds to local and national newspapers are great starts, but every now and then it takes something much larger than just these actions to actually make the change happen...say a "whistleblower," an inside informant, or a patient who has been seriously affected, or even lost their life, to make them stand up and take notice.  Of course, hitting them where it hurts, their deep pockets, is only good if it's accomplished by more than just one person.  Awarding a victim financially with even $10 million doesn't even place a dent in the profits they have been making all these years, knowingly developing and approving medical devices as well as distributing pharmaceuticals that are just as dangerous.

Millions of Americans have medical devices implanted without having knowledge of whether or not they are approved, or safe.  Our healthcare system is broken on every end, but sitting by and doing nothing is not an option, at least not in my life.  I think about my daughters, grandchildren, other family members and friends, who may also be affected as I have, and when I do, how could I live with myself if I didn't/don't do something, anything, to keep American citizens safe when it comes to their health.  

I want medical justice, and will fight with every breath I have left in me to be a part of the driving force behind making those changes necessary, and holding the collective feet of the medical industry's power's-to-be to the fire, in order to make sure that my loved one's, and yours, at least have a fighting chance...right now, not so much.   

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Staying Safe & Healthy During Frigid Temperatures

December 28, 2017

Frigid temperatures will usher in the New Year across most of the U.S.  The eastern and midwest states are already experiencing a cold front, with the southern states also facing cold fronts as well.  Millions of people have found themselves under a wind chill advisory, with wind gusts that even lower the temperatures further, as low as subzero.  If you can stay in during this cold front, do so.  If not, bundle up like the abominable snowman.  Frostbite can set in before you even know it.  If the temperature is 0 degrees Fahrenheit with a wind speed of 15 mph it can create a wind chill temperature of -19, at which time frost bite can occur in just 30 minutes, and sometimes less.

If you don't have to shovel snow off your driveway or sidewalk, then don't.  If there is a strong young man in your family or neighborhood who you could have shovel for you, that would be wonderful, as long as they are dressed appropriately.  Young kids today will go out in 20 degree weather with a pair of shorts, t-shirt, and no jacket on.  What they don't know, is that they too are susceptible to frost bite under the right conditions.

Past estimates show that more than 100 people, mainly men, have died during, or shortly after, shoveling snow.  Snowblowers are great if you can afford one.  However, when you compare the cost of the snowblower to the cost of losing your life, that snowblower doesn't look so expensive after all.

Danger of frost bite, or heart attack, does not just lie in shoveling snow.  Sled riding, skiing, snowboarding, ice skating, even building a snowman have been known to result in deaths due to forgetting just how long you've been out in that sub-zero weather, and the amount of exertion used during that time.  I myself just stick to making snow angels these days...I run outside real quick, make the snow angel, and then run right back in.    

Ice is another health hazard, especially for the elderly.  Older individuals may not see ice, when in all actuality there is ice on the sidewalk, driveway, or parking lot.  Falling at this age often results in broken hips, arms, legs, and even death.  Black ice is the hidden danger most driver's face, as it is virtually impossible to see it until it's too late, putting the driver in grave danger as they spin all over the roadway.  If you are one of those people, like myself, who already find it difficult to see at night time, then driving at night on black ice is definitely not a good idea!

Heat.  Once again, the elderly are more at risk of not setting their thermostat at an appropriate healthy and livable  temperature, or not realizing that their furnace has stopped working.  It's up to the rest of us, if we have elderly parents, family members, friends, neighbors, to check on them regularly during the winter months, especially when these cold fronts come through, catching us all off guard.  

The homeless is a whole different situation.  Should you come across someone, and it's more than obvious that they are a homeless person, and they have no coat, hat, gloves or shoes, please don't just ignore them.  If you can afford to purchase those shoes, that coat/gloves/hat, and even a blanket or two, do so...if not call your local shelter letting them know the location of the homeless person so they can give them shelter or at least give them those items in order to keep them as warm as possible...you just might be saving a life.

These frigid temperatures and unusual cold fronts are nothing to joke about or ignore.  Dress appropriately; don't shovel snow, especially with heart issues, if you don't have to; steady it goes as you drive during snow and ice; look after the elderly checking in on them often; and if you see a homeless person, do something to help them stay as warm as possible or call a shelter who can answer the call of those in need.

Stay Warm, Stay Safe, Stay Healthy & Help Others Do So!!!       


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God Working Through Santa

December 27, 2017

There have been many arguments as to whether or not Santa has any of God's powers, as he's only someone human dressed up as the "real" Santa Claus, which so many children still believe in.  Of course, Santa's across the world do not possess powers from God in the way we think of God's powers.  There are no miracles, right?  But what if there were?  Hmmm...

I just read the story of an 86-year old woman in the throes of dementia who saw Santa Claus in a Mall, and became enthralled with his existence.  She ended up sitting in his lap, and "Every time Santa got close to her, she would nuzzle in and close her eyes as if there was no place she would rather be." (Fox News/Hartsocks Photography 2017)  Although this woman had been diagnosed with Alzheimer's and placed in the care of Hospice, "her family watched in awe how she suddenly returned to life as she held the bearded man's arm and wouldn't let go." (Fox News).  The family was finally able to pull her away from Santa...and then Santa cried. 

Had you asked me before I read this story if I thought God worked through Santa during Christmas, I would have probably said, yes, in some ways.  However, after watching the video, I now have no doubt that God works through many a Santa on, and during, Christmas...it just depends on which Santa's lap you sit on.

Everyone needs hope, including Alzheimer patients.  The hope that Santa truly is real, even if only in one's mind, can work miracles...that's just how God rolls!

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What If?

December 26, 2017

What if?  What if we kept all of the kindness, love, compassion, giving, caring, going long after the Holiday's were long gone?  If there's love in your heart, then spread  it...keep the kindness, love, compassion, giving, caring, going long after Christmas and New Year's Day.  Actually, give it away...give it to away to everyone you see and/or meet.  Can we just for a moment, let go of all the anger and differences, to keep the spirit of the Holidays going??  This is my Christmas Wish & New Year's Resolution...

What if we stayed in touch with those we rarely see, those who are homebound, those less fortunate than us, as well as our very own family members and friends that we fail to stay in touch with throughout the year, and years to come?  I'd like to think that the world we live in would be a much richer, not to mention healthier, world to live in.  

Life is so darn short, and if we could just find it in our heart, and in our schedule, to find time for others and their needs all year long, we'd be richer beyond belief!  So, as we move on this week into the New Year just remember that life is not just a dress rehearsal...you only get one shot at life, so make the most of it...visit the shut-ins, the lonely, those hospitalized, and anyone else in need...you won't be sorry and they will be better for it.

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December 25, 2017

May your Christmas be a Blessed One....MERRY CHRISTMAS TO ALL!!!!

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Food For Thought

December 21, 2017

As I stood in line in the lobby area of the hospital, waiting to get registered for my stress echocardiogram, it gave me time to take in my surroundings, and I didn't like what I saw.  At least 90% of those people in the lobby, or those passing through, were not only overweight, but obese.  What was even more upsetting was that the age category was somewhere between 20's to 50's.  The only saving grace in this scenario I watched play out, was that the elderly that I saw in the lobby were actually in better shape.  Who would have thought??

It got me to thinking about the "why?"  Why the elderly were both physically more fit, and definitely moving at a much faster pace than that of those younger than them?  It was busy at the registration line, so I had a lot of time to think about this phenomenon.  It suddenly dawned on me that for the elderly, sitting down at a table with family, for all three meals years ago, was natural, therefore, creating a much more balanced diet than that of the younger generation.  They also didn't have all the technology, which requires a lot more sitting, then the generations that have followed.

I had to laugh when one elderly lady told her daughter, who was overweight, and who had just asked the mother if she was moving too fast for her, "You don't worry about me...you better worry about yourself...you're actually holding me up!"  I still find myself thinking about this and laughing at the irony all over again!  

Then I became sad...sad for those who were raised in a home with a balanced diet, but when fast-food, and microwave dinners came into their homes, the old-fashioned balanced diet of years ago went straight out the window.  The children weren't bringing their parents in for treatment, tests, procedures, or surgery...the parents were bringing their adult children in instead.  

We HAVE to do better for the next generation, and find our way back to the breakfast & dinner tables for a healthy, balanced meal.  NO MORE fast food or frozen dinners to microwave, but a REAL family meal.  It's not too late to begin.  We don't even have to wait until New Year's Eve to make that yearly resolution of eating healthier, and exercising more.  Be an example to your children & your grandchildren...start TODAY, because tomorrow is promised to no one!

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Know Your BMI

December 20, 2017

Body Mass Index (BMI) is an individual's weight in kilograms divided by the square of height in meters.  Whatever happened to the old-fashioned scales of long ago?  BMI can be used to screen for weight categories that may lead to health problems but it is not diagnostic of the body fatness or health of an individual. (CDC 2015)

The Holiday Season is the absolute worst time for anyone  attempting to stabilize, or lose, weight.  Unhealthy food is around every corner...in our homes, other's homes, offices, stores, and more.  Having willpower takes a whole lot of willpower this time of year!  

It helps if you can remember that your New Year Resolution is just around the corner, and almost everyone's resolution for the New Year involves some type of weight loss or health-related issue.  Eating candies, cakes, and large portions of food, will cost you later, and make it just that much harder for you to maintain or lose that weight.   If you've already gone down that path of eating the wrong foods, or too much of the right foods, there's always the week following Christmas to get back on track, just in time for the New Year!

Remember, healthy eating = a healthy heart!  With heart disease being the number one killer of both men & women over all other diseases, including cancer, this should be all the incentive you need to eat accordingly during the Holiday Season...   

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Understanding Your Medical Bills

December 14, 2017

I'm old enough to remember when medical bills were easy to read.  In today's world, one must have a PhD in medical billing in order to understand one's medical bill.  Used to be if you were admitted to the Hospital where you saw "your" doctor, and then eventually released, the bills would begin appearing in your mailbox within the next few weeks.  Those bills were for two things, and two things only:  the hospital and your doctor...period.  Now, one hospital admittance can result in up to 10 or more additional bills showing up in that same mailbox, most from doctors and medical establishments you've never heard of.  There is no description of what they did to warrant sending a bill, let alone getting paid.  Itemized bills went away with eight-tracks and cassettes.  If a patient wants to see "exactly" what they will be paying for, they must make a request, sometimes in writing, and many times more than one request before receiving the itemized bill months after the request.  The whole time you are waiting, the bills keep coming with the big bold red letters of PAST DUE stamped on them, and/or even phone calls from bill collectors.  You try and explain that you are waiting on your itemized bill, but it falls on deaf ears as they are bill collectors, just attempting to collect your money, and don't care.

Years ago, past-due medical bills could not be placed on your credit report.  Well, no longer.  It's commensurate with dealing with a big bad bully that you can't get away from.  I have friends who worked their whole life, just to retire and lose it all due to medical bills.  Let's be honest...insurance is a joke these days.  You pay an outrageous monthly premium, but when it comes to your insurance company paying your medical bills, they will nickel-dime you, refusing to pay for most, if any, of your medical bills.  Even worse, some patients have lost their insurance, yet are still expected to pay that $100,000+ hospital/doctor/lab/unknown doctors/tests/procedure/surgery bill. 

In the past, many years ago, I used to just pay the medical bill when it came in, just to learn that my insurance paid it too.  Try getting back your money after a medical bill has been paid in full by both yourself and your insurance.  It took me a while to figure it out, but if the medical bill I received did not show an itemized account of those services I received, and whether or not they had billed my insurance yet, I refused to pay.  At first I tried placing a phone call to explain why I would not be paying this particular bill, but all I heard back was "you are the responsible party and you need to pay this bill ASAP!"  That's when I learned to say, nope, no way is that going to happen.

All medical services have a corresponding code.  However, that code associated with the service on your bill may be incorrect, therefore ensuring that your insurer is not going to pay, due to the incorrect code not coinciding with your treatment,  which does fall under your medical plan.  Try getting an incorrect code fixed...it's just as difficult as any other error in your medical bill.  

Have I made you angry yet?  Frustrated?  If not, then keep paying those bills with errors on them because it's just easier that way.  No one likes confrontation, especially ongoing confrontation, but if you want to save those hard-earned bucks you make, I suggest that you get angry...get frustrated, and fight back.  And when you do, I think you will be shocked to find out just how much money you wasted by not what you consider to be wasting your time.   

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Plastic Surgery: To Do or Not To Do

December 13, 2017

If 50 is the new 30 then why are women, and some men, running to the nearest plastic surgery center to look even younger?  I always thought that wrinkles were the paths that a person took in their life to get to where they are today, but in today's world, wrinkles are taboo!

I admit that I had a partial face lift due to jowls suddenly appearing out of no where, and also an eye lift, due to my eyelids hanging so far over my eyes, at age 50, that it was affecting my contacts and eyesight.  I have no regrets.  Actually, it was the perfect time for me to do so.  I reasoned that having it done during the midlife years meant I wouldn't have to have it done ever again, and I was right.  Having any plastic surgery is a personal choice, but what gets lost in all the hype is that plastic surgery is still "surgery" with risks involved.  Many women have died during simple plastic surgery procedures.  Some due to the surgeon not being licensed to do so, and some due to women not being honest with the surgeon as to those health issues they were experiencing, that could possibly change the course and outcome of the surgery, and not for the better.  They feared the surgeon would refuse to do the plastic surgery...either way, they ended up dead.  If looks could kill...

It's so sad to see so many beautiful young women opting for plastic surgery these days, at such a young age, making it necessary for them to continue doing in order to keep up with the wrinkles and the sags.  I know one woman who had so many plastic surgeries beginning in her early 20's that the skin on her face became so thin due to all the surgeries, her facial skin could no longer be stretched, or operated on ever again.  You could literally see every tiny vein in her face as if they were on the outside rather than the inside.  Young women these days are being inundated with advertisements of other women looking perfect, but advertised as the "natural" look with minimum make-up.  I say bullshit!  The more natural a model in an advertisement looks, you can bet the more make-up they had applied for the shoot.  Women, young and old, are driving themselves crazy trying to look perfect, yet often end up disfigured in the process.  I say age gracefully, at least until midlife, if you are set on plastic surgery of any kind.  God made you in his likeness, and God doesn't make mistakes.  

The risk that older women encounter, who opt for plastic surgery, is health issues which could make plastic surgery a more dangerous surgery, not to mention deadly.  Recovery time can also be longer.  It's been 14 years since my plastic surgery, and I will not be having any more, for two reasons: 1) I have heart/lung issues, and 2) even if I could have plastic surgery, I find myself wanting to age gracefully, knowing that I earned every wrinkle.  I love my laugh lines and don't expect to stop laughing anytime soon.  People often ask why I smile and laugh all the time.  My response is, "I sleep with a coat hanger in my mouth!"

If you are considering plastic surgery, please research first, and give it a lot of thought, as once the change has been made, there's no going back...    

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The New World of Health Care

December 10, 2017

I'm old enough to remember when the patient was at the center of medical care.  Now we, the patients, are barely a blip on the radar in all the chaos surrounding healthcare.  Change is inevitable as the years go by, but sometimes change isn't so good...with healthcare not so much.  

In all fairness many strides have been made in cures for cancer and other diseases, but none of those will matter if patients aren't privy to health insurance.  Right now, this minute, there is a person sitting at home, suffering from a chronic/terminal disease that has a known cure, however, cannot get even close to the cure due to lack of insurance.  Healthcare has fallen victim to politics these days.  Don't like the President, well then we'll show him.  Don't like Congress, well then we'll show them.  The only people feeling the affect of those "showing" others what they think are the patients, as well as their families. 

We ALL are patients the day we are born, so why do some believe that they are above the fray?  More and more physicians are becoming chronic & terminal patients themselves these days.  It shouldn't come to that before there is a better understanding of what patients go through.  Patients not only go through the cycle of their illness, but are forced to fight insurance companies, billing departments, and even in some cases do so without any family support.  Another reason why Patient Support Groups are so very important...they don't just address the illness, but all the factors that go along with it.

I strongly urge patients to educate themselves on those Health Bills in front of Congress, knowing exactly what they are voting on when November rolls around.  You might only be one person, but when you add all the patients in the U.S. up, the numbers are huge, and there is power in numbers!  Contact your Senators, Representatives, Legislators who have the ears of Congress.  Your stories need to be told, and heard, not kept in the confines of your home.  From experience, it will take more than one phone call or letter to get the attention of those powers-to-be in your community, but don't give up.  Giving up on making contact with those individuals is like giving up on your life.  We must all act, and act NOW!!!  Our lives, and other lives, depend on it...      

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When The Doctor Becomes The Patient

December 9, 2017

"At the age of thirty-six, on the verge of completing a decade's worth  of training as a neurosurgeon, Paul Kalanithi was diagnosed with stage IV lung cancer.  One day he was a doctor treating the dying, and the next he was a patient struggling to live.  And just like that, the future he and his wife had imagined evaporated... Paul Kalanithi died in March 2015, while working on [his] book, yet his words live on as a guide...  and is an unforgettable, life-affirming reflection on the challenge of facing death and on the relationship between doctor and patient, from a brilliant writer who became both." (When Breath Becomes Air by Paul Kalanithi/Random House New York 2016)

Reading Kalanithi's book literally took my breath away.  His honesty about how he treated patients before his diagnosis, and then after the diagnosis is point on.  He utilizes this book to open up his heart and soul when looking back on his lack of truly feeling what his patients were going through.  He reminisces's about the time he had to tell a mother that her baby had been born without a brain and would die soon, and then walked away, getting in his car to go home.  But while driving home, he wondered why he didn't stay with that mother.  Hold her hand and sit with her letting her know he cared.  Then tears began streaming down his face, as he did some soul-searching.  He states, "Before operating on a patient's brain, I realized, I must first understand his mind: his identify, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end.  The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt.  Those burdens are what make medicine holy and wholly impossible: in taking up another's cross, one must sometimes get crushed by the weight."

When Breath Becomes Air should be required reading for all medical students, as well as practicing physicians.  Patients are not just a number, or another thing to do, and as Kalanithi found out, the hard way, becoming a patient yourself, is not recommended in order to understand.  Toward the end of his book, he writes, "In the end, it cannot be doubted that each of us can see only a part of the picture.  The doctor sees one, the patient another... Human knowledge is never contained in one person.  It grows from the relationships we create between each other and the world, and still it is never complete.  And Truth comes somewhere above all of them."

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Do No Harm

December 8, 2017

The Hippocratic Oath requires a new physician to swear upon a number of healing gods that he, or she, will uphold a number of professional ethical standards (National Institutes of Health - Sept. 16, 2002).  Basically, do no harm.

So we now know what the Hippocratic Oath means to the physician, but what does it mean to a patient?  Physicians will often use the "do no harm" phrase when explaining to their patient why they are choosing not to perform a procedure or surgery.  They believe that the risks don't outweigh the benefit.  But, what if, by not performing a particular procedure or surgery, does harm to a patient?  There is a very fine line between both sides of the Do No Harm oath that a physician must weigh before moving forward with any procedure or surgery.  This is why we pay physicians however, to recognize the difference for each and every patient and case.  This does not release the patient from any responsibility when arguing their side in the decision-making.  Patients DO have a voice in their own healthcare, and need to use that voice, even against the physician wearing the crisp white coat with a stethoscope draped around his or her neck.

"Healthy people, I have concluded, including myself, do not understand how everything changes once you have been diagnosed with a fatal illness.  How you cling to hope, however false, however slight, and how reluctant most doctors are to deprive patients of that fragile beam of light in so much darkness." (Do No Harm by Henry Marsh/Thomas Dunn Books/Copyright @2014)

It's when a patient who is left to cling to hope and that fragile beam of light, that they begin grasping for anything to hold onto.  But if a patient is savvy enough, and motivated enough, to do research on their own regarding their illness, they might just find themselves asking just the right question that will open the door of possibilities.  It happens.  Even though I'm not a physician, I am a patient, and am half of the equation as to whether or not I live or die, so it only makes sense to do some of the work myself.  Most times my research is rejected, but there have been times, just recently, where my research, and another physician's opinion, backs up my gut feeling along with my research.  I don't need to be right, I just want to live.  No crime in that.  

For me, the Do No Harm oath means many things other than what it does for a physician.  Physicians have learned mainly through textbooks and journals, where patients have learned by what their bodies and their gut feelings tell them.  We must come together as one, with open minds, and open hearts, in order to Do No Harm.  By doing so, many patients lives will be saved...


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Use Your Cell Phone To Get 'Appy'

December 7, 2017

Life is stressful.  There's no question about that!  So much work to do, with less time to be happy.  Now your cell phone can help you to be stress-free.  That's right, the same cell phone that does nothing but stress you out.  There are apps for just about everything these days, and now there are several "free" apps to help you feel less stressed and even happier.  Here are just a few to try out:

  1.   Happify - this app promises to be your 'personal happiness trainer.'  It's a library of games, motivational articles, quotes, and audio tracks from psychology coaches and successful business people, in order for you to de-stress.  It's free, does require you to complete a short questionnaire to reveal your current state of mind before suggesting which of the above would best suit you.  There is also a 'happify daily' section comprised of positive topical news stories and tips to boost your mood!
  2. Breathe2relax - app teaches you how to improve and practice your diaphragmatic breathing through a video in order to reduce stress.  Learning how to breathe properly is the first step in developing a calmer you!  It too is free.
  3. Stigma - this app is a daily journal which encourages you to off-load to the sum of just 200 characters a day.  Basically all you do is write.  Everyone has time to off-load their stress by writing 200 characters a day  Free.
  4. SAM - if you suffer from anxiety, this is the app for you!  It's an anti-anxiety app using the anxiety tracker, developed by the University of the West of England, which measures how anxiety affects you over time.  You can identify solutions and practice self-help options.  You record your daily worries using the tracker along with the tools within the app to train yourself to be less stressed.  This app also comes with several physical and mental relaxation exercises lasting between 1 and 30 minutes...they're easy to do and it's also free.

So, forget your troubles, come on and get 'appy!"

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When Your Doctor Appointment Takes A Turn For The Worse

December 6, 2017

You pride yourself on finding those doctors who you see as having a long-term relationship with.  These relationships are not friendships, but are akin to one, as you can tell them things that you can't tell anyone else.  Then one day, the doctor/patient relationship that you had with them seems to dissipate in one visit, with no warning.  However, all is not lost.  It was bound to happen...a visit where your emotions are at an all-time high, and your doctor is in an all-time frenzy.  Two worlds collide, an emotional car crash if you will.  

Your doctor, after going over your symptoms, which have worsened, and any test results, ends the visit with, "Let's just give it another six months, and we'll see where we're at then."  You are frustrated, as you expected more than just a casual answer, as your symptoms have worsened, and there has to be a reason for that.  The doctor is not the one living with the pain, the fatigue...a changed life.  You came with a list of questions, yet all that preparation went right out the window, being replaced with the watchful waiting game leaving you unsettled.  Physicians take  an oath to "do no harm." What does this mean?  It's all in the interpretation.  Many physicians choose to not take any  action due to those risks associated with doing so.  Some take action, withstanding the risks, because they believe that by doing nothing is just as harmful to the patient as not taking the risk.  

I'm not you're typical patient.  I'm not textbook, and never will be.  I know my cardiologist has struggled on many occasion with where to go from here, and I can understand why.  Nothing about my heart and lung diseases makes sense, but nonetheless, there they are.  But neither one of us should give up, or discount the other's reasoning when not seeing eye-to-eye.  As a patient, t's okay to push back when you feel your back is against the wall.  Just like in any relationship, both you and your doctor have a vested interest in what's best for your overall health.  If this is not the case in your situation, then getting a second opinion would be a good idea.

Don't ever stop questioning, or seeking answers.  Sometimes in order for the sun to shine through, a little rain must fall.  If the relationship between you and your doctor appears to be heading toward a tornado, do the safe thing and take shelter in another doctor's office.  It's okay to fight for your life...



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The First Day of the Rest of Your Life

December 3, 2017

The day after celebrating your birthday with family and friends, can either be a day where you mourn the end of the celebration, or a day where you revel in what's to come next.  There is so much more life beyond the horizon, I can't help but be excited for what this next year has in store for me!  Most individuals look forward to New Year's Day to begin their new year, but for me it only makes sense that the actual first day of the rest of your life began with your birth, and therefore should continue to be recognized on all future birthdays that follow.  With that said...Happy New Year to me today!

The first and foremost issue I will focus on today, the first day of the rest of my life, is my health, as without my health I have nothing.  No one does.  I'm off to a good start as I took my daily walk, pulled out my Yoga mat and hand weights afterward.  Early tomorrow morning, I have a Doppler Echocardiogram, and an appointment with my cardiologist immediately following the test.  For me, tomorrow will be the turning point as to the next steps we, my cardiologist and I, take in order that I might have a better quality of life.  The last few years have been a waiting game, and as a patient I am beginning to lose my patience.  I have faith that if we can agree to take that leap of faith together, I might just see a little light at the end of the tunnel.  So far, it's been nothing short of an oncoming train.  I understand the risks of surgery, but I'm ready to move forward, with or without the blessing of my cardiologist.

Next steps in my new year: 

DIET:  Making sure I stay on a healthy, consistent diet, with consistent being the key.  I don't overeat, but do have a tendency to forget to eat.  This is NOT healthy and not recommended!  The food I eat is healthy, but I need to eat more of it, as I progress through the day.

EXERCISING:  Exercising is only a problem on my bad days, making it even more important for me to do those exercises, that my body allows me to do, on my good days.  It's hard sometimes to get back on track, but I plan on pushing myself even harder in this area in the "new year."

STRESS:   This is a "biggie" for me, and what exacerbated my health issues.  I truly believe that people who care more, actually stress out more.  But it's time to stop, and know that caring doesn't always have to come with stress.  I've learned to say "NO."  I used to take on everything, and everyone's problems, but no more.  I help out where I can, and when I can't, I don't.  When problems arise, whether big or small, I've learned to give that problem only a small amount of time, usually 5-10 minutes, and then I let it go and let God.  I've always said that if you want to make God laugh, tell him you have a plan.

You don't have to wait until your Birthday, or New Year's Day, to begin leading a healthier lifestyle.  It takes a lot of work, but you won't be sorry and your family will thank you, so start today!      

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Another Year

Decemeber 2, 2017

Today is my Birthday, something I don't  take for granted, as I never know if it will be my last...none of us do.  That's why today is called the "present," because that is exactly what it is...a Present, wrapped with Love and tied up neatly with a Beautiful Bow by the hands of God.  I am truly blessed!

Oh I celebrate my birthday all right, but I also have a moment of silence, in which to reflect on the fact that I've made it yet another year...a year of my heart beating....a year of breathing...a year of living.  How are you living your life?  Are you happy?  Is your heart filled with Love and your mind open?  Have you found your purpose, and if so, are you living it out?  Don't wait until your next birthday to say "now I can do ____.  Do it now, and do it well.

I am now off to spend the day with my two beautiful daughters to celebrate with good food, a funny movie, and lots & lots of laughter...can't think of a better way to spend my Birthday...today is my Present!  

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The New Lonely 

December 1, 2017

When we think of lonely people, we think of the elderly, who've for the most part have had a great life, and can sometimes fend off the loneliness with past memories of their time here on earth.  These days loneliness runs rampant among chronic illness patients, of all ages, who dream of  having future memories.  This, is the new loneliness.

According to Julianne Holt-Lunstad, PhD, professor of psychology and neuroscience at Brigham Young University in Provo, Utah, believes through research, that loneliness and social isolation can predict premature mortality risk.  Loneliness has also been linked to cardiovascular disease, Alzheimer's, stroke, and insomnia, among other health conditions.  Suicides have also been linked to loneliness and isolation from others as well.

I'm not sure when it happened, but one day, I realized that my relationships, both with family & friends, had changed.  Their visits, calls, emails, and texts became less and less.  Not because they, or I, had changed, but because my health had changed.  When diagnosed with an illness, especially a chronic illness, for obvious reasons, one cannot do what they used to do, keeping them from attending many social activities, athletics, and late-evening events.  Soon people stop asking, and eventually stop making any contact due to not knowing what to say.  It can actually become an awkward and uneasy conversation for both the person calling and the person they called.

I tried for a long time to stay in contact, but the rejection was worse than the loneliness.  Then one day, I took the bull by the horns, which can be a dangerous thing in some cases and not recommended,  realizing that lonely people had an option.  They could reach out to other lonely people, due to a common  understanding of the dynamics of being alone and isolated.  Soon, I found myself with plenty of people to talk to, to meet for lunch, and to visit, and them visiting me.  By taking that  leap of faith, I am no longer lonely, and know that others like myself, also are no longer lonely.  Sometimes it doesn't take a village...it only takes one person reaching out to another person to make a difference.  By reaching out to the lonely, regardless of age, can literally mean the difference between life and death.

Tonight before you go to bed, think of someone you know who is either homebound due to illness, or has suffered the loss of their significant other, and make a promise to yourself, that you will take the time out of your busy schedule tomorrow to make that phone call...to visit...to take them to lunch, dinner, or a movie if able.  Doing something is far better, and much more productive, than doing nothing...make tomorrow your day of making someone else's day!     

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Managing Patient Stress

November 30, 2017

First comes the diagnosis, then a trail of doctor appointments, tests, procedures, second opinions just in case, surgery, rehabilitation, trips to the pharmacy too many to count, ER visits, dealing with insurance and medical bills, and all of this is just the beginning.  Being a patient, and stress, go hand-in-hand, like a crayon and coloring book, only not near as relaxing.

For many patients who have been diagnosed with a chronic disease, or diseases, being a patient can become a part-time, if not full-time, job.  Down time is rare.  It's like going to war with your body and praying you will win at least a battle or two.  When I was young, my parents shouldered the responsibility, and stress, of dealing with my illnesses.  Today, as an adult, I'm on my own.  I now have a new found respect for my parents, even though it wasn't nearly as stressful for them back then, as it is for me, and others,  today.

They say the number one killer of patients is visitors, whether in the hospital or at home.  Although I somewhat agree with the humor used in this version,  what's killing patients these days, is the stress of dealing with the medical bills and insurance, or in many cases, lack of.  Some patients find themselves facing foreclosure on their home, repossession of their car(s), and having to seek government assistance in all areas of their life and that of their families.  For me, I already eat healthy, exercise as much as my body allows, so my number one priority is to stay as heart-healthy as I can, and to keep my stress down to a minimum.

I've been chronically ill long enough that after so many doctor visits, tests, procedures and surgeries, that family and friends have a way of not answering, or returning, your calls, emails, or texts.  I don't blame them.  After almost 14 years of needing a ride when I was unable to drive myself, can be very tiring for the other person who wants so badly to help out.  And before you know it, that yucky feeling of guilt creeps in, and you just stop asking.  It might not be family or friends, but there are some insurance's such as Medicaid who do offer free rides to and from your medical needs.  They might not stick around to hold your hand during whatever it is you're having done, but there's one person who will never leave your side...God!

When you find yourself in the midst of the storm of medical chaos, turn to something that brings you peace...soothing music, a glass of your favorite wine, a brisk walk, going to church, reading that book you've been staring at for months now, or just be still.  Sometimes when we turn off the noise, including the voices in our own head, it's amazing how steady our heart rate becomes, our thoughts turn to positive ones, and that peace we so desperately have been seeking, flows over us like an ocean over the sand.  Take charge of the stress in your life, starting today, not tomorrow, for tomorrow is never guaranteed...    


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November 29, 2017

When you receive devastating news about your health, it's very difficult to have Hope, to have Faith, and to Believe, in a better tomorrow.  However, it is vital to our health to have all three of these going for us, especially at one time!

Everyone should have Hope.  It's what makes us want to get up in the morning.  It's what makes us smile as if we'd slept with a coat hanger in our mouths all night.  Hope lights the way, and we should grasp it, hold onto it, and never let it go!  Had I given up Hope when I was first diagnosed, I truly believe I would not be here today, thus, missing out on time with my family and friends, and even new experiences.  Hope will keep us alive.

Faith is a little bit trickier, in that some people find it very hard to have Faith in the face of adversity.  I can't blame them.  When you've led a healthy lifestyle, and then hear words like heart disease, cancer, diabetes, etc. coming out of your physicians mouth, it can be very hard to have Faith that you have a future.  Hope is a great lead-in to having Faith.  If you have Hope, Faith is not that far behind!  There's Faith in your physician; Faith in your family and friends; Faith in whoever your God is; Faith in Believing.

Once you have conquered Hope and Faith, Believing that you will beat heart disease...beat cancer...beat diabetes, etc., can have a powerful affect on you both mentally and physically.  When you believe these things are possible, they often are.  I truly believe that I will overcome anything that my heart and lung disease throws my way.  It may not be easy, it may not be soon, but when the next curve ball comes my way, I'm going to hit it out of the ballpark!  

Have Hope...Have Faith...Believe. 

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Chronic Illness & Dating

November 28, 2017

You notice them noticing you, and rather than be excited, you panic.  Why?  Because, dating means letting that other person into your life, which also includes your chronic illness(es), something you feel embarrassed about.  This is what it's like to date while living with a chronic illness...unadulterated fear.

It's not like you have to blurt out your diagnosis the first time you meet, or even on the first few dates, but eventually, should the relationship grow, and see it might be heading into a serious relationship, you realize the time has come.  How will he or she take it?  Living with a chronic illness is hard enough on you, so you think why would anyone else want to take that on?  If someone cares enough, or even has fallen in love with you, they will stay.  If not, they probably wouldn't have been the right person for you even if you were healthy, as there are no guarantees in anyone's life, not even theirs, that their health might just take a turn for the worse overnight.

For many chronically ill patients sexual relations also become a challenge, especially heart and lung patients, due to breathing issues, fatigue & more...I should know.  This is probably the hardest dating issue a patient will ever discuss, once the relationship has reached the point of being intimate.  Find your comfort zone, and just think of it as a cardiovascular workout.    

There are different stages, for different people, living with chronic illness(es).  For me, just getting ready to go to a concert, sporting event, or movie is exhausting, even sometimes to the point of not being able to go.  That's when I place the last-minute phone call, get undressed, take off my make-up, then curl up on the couch, where I'm left to have my pitiful pity party.  It's just so darn frustrating for me, as I know it is for so many others, so to bring  another person into my life, where I have to explain the unexplainable, just stresses me out.  I never know when I'll have a good day, or night, so making plans is virtually impossible.  When you throw "dating" into the mix, talk about complicated!  

But, if all of us who are living with chronic illness(es) give up, then we are sending the wrong message to others, including ourselves.  We should not let our illness(es) define us and what could be our happiness.  I've placed my dating dilemma into God's hands, and should He place a good-hearted, understanding man in front of me, I hope that I have the good sense, and faith, to at least give dating a chance.  No one wants to grow old alone...I know I don't!  

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Have a Blessed & Healthy Thanksgiving

November 23, 2017

Today is Thanksgiving Day, a day where we give thanks for everything we have.  Every day should be Thanksgiving day, without all the fattening food, as we should be giving thanks for all that we have in this life, especially good health.

Try and eat as healthy as you can today, but if not, make sure that you get in some exercise, and begin back on a heart-healthy diet, as early as tomorrow!

Let's not forget to thank, and pray for, those individuals who are not able to be with family today on this special occasion: our military, law enforcement, medical personnel, and all public servants, who are not privileged to have the day off.

May your Thanksgiving be filled with blessings of food, family, friends, and Love...

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Medication Adherence

November 21, 2017

The majority of patients have no problem with taking any and all medications prescribed by their physicians.  The polar opposite patient fails to take any of those medications prescribed by their physician.  There are many reasons for this, anywhere from patients who would eat and swallow wood if they thought it would make them feel better, to those patients who pick up the prescription(s), pay for them, but never have any intention of ever taking them.  These patients have given up and rather than argue with their physician, just go along for the pretend ride.  Then we have patients who never get their prescription filled due to lack of insurance or funds.  Instead of letting their physician know that they cannot afford the medication prescribed, they swallow their pride, never letting the physician know this, thus, leaving them without proper medical treatment.

Patients who take every drug that the physician prescribes, also could fall into the category of just not knowing when to question their physician as to the "whys" and "what ifs."  Funny how we question just about everything, and everyone, in our life, with the exception of doctors.  When a doctor, including your primary, prescribes a medication, but you're apprehensive about taking it, questioning that doctor is always the right thing to do.  Ask about side effects, adverse affects, how long you will have to be on this medication, whether or not the other medications that  you're presently might cause there to be a conflict with the new medication?  These are just some of the examples of what you should be asking your doctor when being prescribed a new medication.

If you decide to take the medication, and begin having a severe reaction to it soon after, call your doctor immediately, and they will direct you to either stop the medication immediately, or to try and give it a few more days.  That will leave the ultimate decision in your hands as to whether of not the side effects are worth it or not.  If you decide to stop the medication, make sure that you let your doctor know.  There are some medications that, should you choose to stop taking, will require you to "wean" yourself off of, as stopping them suddenly can also have serious risks.  Again, ask your doctor.

Make sure that you are taking all of your meds when directed to, and if that means the same time each and every day, then you take those medications the same time each and every day.  This is important in order to get the full benefit of those drugs prescribed to you.  All pharmacies have available pill boxes, some with just days of the week, and some with both the days of the week as well as AM or PM, which can be very helpful as a reminder of when to take your medications.

Adherence of taking your medications can have great benefits, but if you do not take them as prescribed, you are more than likely to never see any benefit, which affects your overall health.  Without your health, you have nothing!

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Medical Consent Forms

November 20, 2017

I had the unpleasant experience of taking my oldest daughter for her first colonoscopy last week.  The last person I drove to their first-ever colonoscopy was my father 8 years ago, who died from complications of what was supposed to be a simple procedure, the next day.  With me driving her, the odds were not in my daughter's favor.   I prayed about it, and off we went.  After she handed her driver's license to prove she was truly her (like anyone would want to get a colonoscopy?), along with her insurance card, she was handed a laminated Consent Form to read before signing the real Consent Form while being prepped.  She glanced at it, but I read it word-for-word.  I then explained to my daughter how important it was to read ALL Consent Forms for any type of procedure or surgery.  Point in case:  many colonoscopy patients will also have an endoscopy as well, but are not told this prior to the colonoscopy.  So when they wake up with a very sore throat, they're left to wonder if the doctor had gotten his top & bottom mixed up somewhere along the line, asking the nurse, "why is my throat so sore?"  Had the patient read the full Consent Form, they would have seen where an endoscopy would also be performed.  However, the onus of transparency of those procedures being performed, lie directly on the shoulder of the doctor.  

So, is this, or is it not, informed consent?  There has been much debate over this issue, and still no resolution, or general consensus, as to what constitutes informed consent.  The word "transparency is thrown around like a basketball on a basketball court, with, once again, no clear definition in sight.

Informed consent is defined as the permission a patient gives a doctor to perform a test, procedure, or surgery after the doctor has fully disclosed all information, including risks, and the probability that the benefits outweigh the risks.  The patient in turn must be able to comprehend the relevant information being provided by the doctor.  Your consent then, without coercion or being placed under any duress once signed, is considered informed consent.  But wait.  What if you give consent for those tests, procedures, or surgeries that were discussed, and only one's mentioned on the Consent Form you signed, but another medical procedure is performed, without your permission, and complications arise?  That additional procedure does not have informed consent, unless the said procedure is a life  saving measure taken by the doctor in order to save your life.  In my dad's case, a simple medication would have sufficed in correcting the minimal blood from those small vessels barely bleeding.  The additional instrument the doctor used, had no informed consent, but he went ahead anyway, with the same excitement like that of a little boy at Christmastime wanting to fire his BB gun, before technically knowing how to use it.  The doctor fired his BB gun into my dad's colon and stomach 6 times, burning 6 holes into both, killing him.  NOT informed consent!

As I waited in the lobby area to be taken back to see my daughter last week, after her colonoscopy, I noticed at lest 10 patients refuse to even read the laminated Consent Form, handing it back to the office staff.  There was a fine line between whether or not the patient just didn't care, or just didn't want to appear stupid by even taking the Consent Form, let alone read it.  This was partly due to the lack of enthusiasm the staff showed when presenting the Consent Form to the patient, as if it were no big deal.  In all fairness, some patient's have a false sense of security when it comes to trusting their doctors, and go into the procedure as if going in for their weekly  haircut.

For those going into any future testing, procedures, or surgeries, withstanding the trust you have in your doctor, I strongly suggest that you read the Consent Form from beginning to end before ever signing.  You might find that you have a question or two.  There is no such thing as a stupid question, only the one not asked...the one left unanswered, just might kill you!   

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The Evolution of the Stethoscope

November 18, 2017

French physician, Rene-Theophile-Hyacinthe Laennec, invented the stethoscope in 1816, pioneering it's use in diagnosing various chest conditions by listening to the lungs, heart and sometimes even the intestinal tract.  The next major improvement was not made until 1851 when the stethoscope was refined by George Commann.  During the 20th Century, minor improvements were made, but the basic principle behind the stethoscope remained the same.

With all due respect to those who created and improved the stethoscope in previous years, I believe there are still improvements to be made as the digital world invades the medical world.  Point in case:

Rather than go on Spring break in 2013, 21-year old Tyler Crouch, a mechanical-engineering student dedicated that time to developing a digitized stethoscope.  Since then, Crouch has formed his own company, Eko Devices, along with two other classmates, Connor Landgraf, and Jason Bellet.  Ironically not one of them have a medical background, but had the good sense to incorporate cardiologists, from the beginning, to guide them.  The wireless stethoscopes can transfer a patient's heart rate and other vital signs to Eko's secure portal, where it can be shared with doctors as a second opinion.  It only made sense for these three geniuses to eventually develop a piece of equipment that would reach a larger market...The Duo, a digital stethoscope for home use, changing the way heart patient's are monitored.  This digital stethoscope fits into a heart patient's hand, combining EKG readings along with heart sounds, thus allowing patients to monitor their heart-health at home, then send that data to their physicians/cardiologists.

Dr. Ami Bhatt, director of outpatient cardiology at Massachussetts General Hospital, and assistant professor of medicine at Harvard University states, "The Duo gives at-home heart patients a cardiology-level exam."  Other doctors are not so sure, remaining skeptical, stating that it is far too early to determine how helpful telemedicine devices will be.  They cite obstacles, i.e. patients forgetting to use the device, and even if they do remember to utilize The Duo, can they be relied on to do so both consistently and/or correctly?  As with most inventions, only time will tell.

The Duo can only be obtained by a medical professional, or as a prescription-only device for heart patients.  On the Eko Device site, The Duo digital stethoscope comes with a  warning of CAUTION: FEDERAL (USA) LAW LIMITS THE DEVICE TO SALE BY, OR ON THE ORDER OF, A LICENSED PRACTITIONER.

I have to wonder what French physician, Rene-Theophile-Hyacinthe Laennec, the inventor of the stethoscope in 1816, would think about this newly digitalized re-creation of his stethoscope.  I would like to think that he would be proud to have been the founder of the stethoscope, but even prouder of those who have worked tirelessly to improve upon it...  


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Clinical Trials: to do or not to do?

November 17, 2017

After being diagnosed with heart and lung disease, I began receiving requests to participate in medical clinical trials.  Having worked in the field of law and law enforcement, the only trials I had ever had knowledge of were those trials held in a courtroom in front of a judge.  My first thought was NO WAY!  I'm not going to be anyone's "guinea pig!"  However, just out of curiosity, I began researching the importance of participating in clinical trials, and realized they weren't all bad, nor were they just about my health issues, but that of other individuals with serious illnesses.  So, I searched for a clinical trial that would fall under the category of women and heart disease, finding one being conducted at the Barbara Streisand Cedars Sinai Women's Heart Center (BSCSWHC) in Beverly Hills, CA, regarding microvascular heart disease found in women.  I had the same symptoms that were given for the disease, and was a woman, so I made the call.

With only a few glitches along the way of the 6-year trial, that I continue to participate in, at least until May of 2018, I have had an overall good experience.  I was found to have microvascular heart disease, and was placed on the drug Ranexa, which worked beautifully for my issue of chronic angina (chest pain).  Here's one of the few glitches I ran into however:  When I ran out of the Ranexa, the doctor at the BSCSWHC wrote a prescription for me, but when I went to retrieve the drug, it was, with tax, over $500 a month.  I grabbed my credit card back from the clerk at the pharmacy before he could swipe it saying "I don't think so!"  I called the office of the clinical trial, and was told that they only provided the initial medication, but after that it was up to our insurance to pay.  I explained that my insurance did not cover the drug as it was not a generic.  They did offer a discount card, which was all of $5.00 off the over $500, but that was like putting a bandaid on an arterial bleed.  I called, and wrote, to the pharmaceutical company who manufactured the drug, regarding my inability to receive their drug Ranexa for a chronic heart-health issue.  It took me 8 long months of having to fight, all the while suffering from severe chest pain, but I finally wore them down, and they began mailing me the drug at no cost, not even the shipping.  This lasted until I went on Medicaid, who did pay  for the Ranexa.  My fight in getting the medication I so badly needed, is a great example of being your own best advocate!

The only other downfall to the clinical trial was the additional cost, due to the location of the clinical trial.  There was the cost of the flight, taxi's, the hotel, which did give me a patient discount, and food...let's just say the food in Beverly Hills is not cheap.  I did run into Rod Stewart and Rachael Hunter at a restaurant I was having dinner at, where they sat right behind me, so all was not lost.

I did write to the BSCSWHC clinical trial department, suggesting that they include, into the budget portion of the clinical trial, the cost of the drug for the disease being investigated by the clinical trial, as most women could never afford the cost if their insurance did not pay.  I also suggested that there be inclusion of travel, hotel and food costs as well.

I learned a lot about clinical trials going through this one, but the most important result of participating in the trial, was that I found a drug that might not have alleviated the pain in my chest altogether, but did greatly minimize my chest pain, making it all worth it.  Participating in a clinical trial is an individual decision, one to be made by the patient, and the patient alone, as it will be their body put through the grinder of testing necessary to see if the clinical trial is a worthy one.  

I just happened to be one of the lucky one's...mine was without a doubt worthy!

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Cures For The Winter Blues

November 15, 2017

It's that time of year again.  You go to work in the dark, and you drive back home in the dark.  The "dark" can be a very depressing place to be.  We know this time of year is coming, but somehow it still surprises us when it appears.  I didn't see this coming so soon, many people say.  Maybe we should see it coming, and then prepare for it.

Here are a few tips to survive these dark, dark days:

  1. Prepare a nice hot cup of coffee or cocoa to take with you on your drive in to work.
  2. If time allows, try and get a run/walk in, or some form of exercise to get your blood flowing.
  3. Read a positive quote(s) and/or the day's devotional.
  4. Put music on in the car that puts you in a good mood.  That could be anything from rock-n-roll to classical, depending on your personality.
  5. A smile goes a long way, so smile at everyone you pass.  You'll be surprised just how many smiles you get back.
  6. If you don't have the advantage of working near a window, try and at least, on those days that are sunny, to get outside for a brisk walk or drive.
  7. Don't eat your way through winter.  Doing so will only make you feel worse.  Eat healthy.  If it's not at your desk, you can't eat it!
  8. While driving home after a long day's work, begin making plans for a vacation...somewhere warm and sunny.
  9. Before going to bed, reach out to someone in need.  Maybe a friend or family member who is a shut-in, and can't get out, even during the good seasons.

There are people, however, who the above tips might not work for.  Seasonal affective disorder is real, and affects many individuals during the cold, winter months.  For these people, I suggest using therapies i.e. light therapy. There are medications for this disorder, but you must seek advice from your physician before considering this step, due to side effects and adverse reactions to drugs, which could even depress you more.  You may also want to speak to your physician about seeking out a specialist who deals with seasonal affective disorder.  Whatever you do, don't let yourself get so far down, to the point where you are clinically depressed.  Be proactive, not reactive.

There is no clear cure for the winter blues, as winter will come around every year, like it or not, but there are options to beating those blues at their own game.  Try those tips I have provided first, but also know when to seek out professional help.  Winter blues are real.  It's up to you to decide how you want to chase them away...far, far away!

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Dementia or Mental Illness

November 14, 2017

My mother had always been quiet, never uttered a cuss word in her life, and surely had never been an abuser, verbally or physically.  My stepfather who was with mom on a daily basis, began noticing that he couldn't do anything right in her eyes, which was the polar opposite from the days of her thinking my stepfather could no nothing wrong.  She said mean hurtful things, began cursing, and eventually became physical toward my stepfather, even though all he was trying to do was help her.  He wasn't sure if she was having a nervous breakdown, or a mental one, so he called me, finally confessing to what their home life had been like for the past several months. 

Since mental illness did not run in her family, nor had anyone ever had a nervous breakdown, we were stumped.  Then it all started coming together about 3 months later when mom began forgetting where she put things, about her weekly hair appointments, where she was at, and one time got lost while driving.  Had the man at a store, not too far away, missed seeing her walking down the side of the road, and knowing both her and my stepfather from coming into his store, God knows what would have happened to her.  He called my stepfather, who came and picked her up, leaving the car behind, as he knew it was time to hide the keys from her.  She could no longer drive.  My stepfather finally took my mom to the doctor to see if there was a test that could be run, and there was.  The cat scan results showed that she had atrophy of the brain, and was in the early stages of dementia.  Eventually mom was diagnosed with full-blown Alzheimers, and had to be placed into a nursing home.  It was seven years from the time of her diagnosis until her passing...this is why they call Alzheimer's the long goodbye.

I now have someone in my life who's personality, which was always so caring, compassionate, always looking at the sunny side of things, began exhibiting unusual behaviors i.e. anger, saying hurtful things without provocation, and was now just plain mean.  I was afraid to answer the phone when they called, afraid to text back, basically just afraid to have any communication with them as I could never say the right thing.  They could twist the most innocent statement or question, and then make it into a third world war event.  Due to their being mental illness on the maternal side of their family, I quickly leaned toward that being the reason behind the sudden change in their personality, yet wondered why now?  This doesn't make sense.  I soon found out that others in this person's life were having similar issues, and found themselves constantly walking on egg shells afraid to awaken the beast.

And then one day it dawned on me that this is how my mother's dementia/Alzheimer's started out.  The verbal abuse, mean comments, and cursing, before ever being diagnosed with dementia.  Although this person's behavior had me at the point of wanting to just walk away from the relationship, due to the nature of the stress it was bringing into my life, I decided I needed to let one of their family members know what my suspicions were.  I might not be a physician, but I did have some prior experience with my mother's sudden and drastic change in personality.  The question became, just how involved did I want to become?  This wasn't family but a long-time friend.  Being single, chronically ill, financially strapped myself, already put enough stress on me, and if I dove straight into the middle of this whirlpool of emotions I just might be dragged down into it as well.  After telling one family member my thoughts, I stepped back, and it was one of the hardest things I've ever had to do as a friend.  It's like when the flight attendant tells you to place the oxygen mask over your own face before helping others...there is a reason for that.  If you don't take care of yourself first you will be unable to help others.  So, I have put my own oxygen mask on first, hoping and praying  that I have somehow placed an oxygen mask on my friend.

Families often describe the initial signs of dementia in another family member, who exhibits behavioral and psychiatric changes, as becoming anxious, depressed, paranoid, and irritable, taking it out on others.  As the disease progresses their emotional distress shows up in verbal or physical outbursts, destructive behavior, and abusive behavior.

This issue with my friend is a recent event in my life, so I'm not sure where all of this will lead, but I hope that in some way, I can be a support system without subjecting myself to any more abuse.  Until then, I will pray for the best... 

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Healthy Holidays 

November 13, 2017

Holidays are a great time to eat, drink and be merry.  But it's after the holidays when people feel the after effects of what all that holiday cheer has done to their bodies, inside and out.  Pants that once zipped up easily no longer do; that button-down blouse won't button; and your face is even more round than usual.  And that's only on the outside.  Inside, your once flat stomach has stretched, and is begging for more food, leaving you feeling hungry all the time.  Even your bathroom habits have changed, in order to accommodate the changes to your digestive system that occurred over the Holidays.  So you do what every other person who overate during the holiday season...you make a New Year's resolution to exercise and begin eating right.  Previous outcomes show that rarely, if ever, does anyone stick to their resolution.  Having the "fitness fairy" wave her  wand over your head on January 1st just doesn't happen.  Forget the resolution and just think of it as a strong desire to stay alive.  That should motivate just about everyone!

Exercise is one of the keys to not only losing weight but also remaining heart-healthy, and the key to exercising is to find something that you enjoy doing, otherwise you will quit before you even get started.  You don't have to enter, and run, a marathon, but walking briskly every day for at least 30 minutes can burn anywhere from 90 to 200 calories.  The New England Journal of Medicine in 2002, found that those who walked enough to meet physical activity guidelines (30 or more minutes of moderate activity on 5 or more days per week) had a 30% lower risk of cardiovascular disease, compared with those who did not walk regularly.  There are other benefits to walking such as an improvement in your mood, your creativity will get a boost, and your jeans will even get a little looser.  So, before you hit All About Sports looking for, and purchasing, all that home equipment, make sure that whatever you are buying is something you will enjoy doing.

During the Holidays, there is literally no way to stay away from those foods that are considered unhealthy when consumed in large portions, and not in moderation.  Cookies, turkey, mashed potatoes, pies, cakes, candies, and more are lurking in every home and office, just sitting there calling out your name.  You don't have to answer that call...it's called willpower.  During our family holiday gatherings, I have learned to not stand in the kitchen area, catching up with other family members, as that's where all the good stuff that's bad for you is.  I get a plate, fill it with those items in the vegetable tray, maybe a little turkey, and move away from the food area, but still stay close enough to participate in the conversation.  I can attest that this works!  For the last 5 Holiday seasons, I never gained even a pound.  Mostly because I was able to steer clear of the bad food, but even when I would fail at doing so, I made sure I either got more walking time in, or some other form of exercise to burn off those extra calories.

A well-balanced diet is important in order for your internal organs and tissues, which need proper nutrition, to work effectively, otherwise, your body will be more prone to disease, especially heart disease, fatigue, flu/colds, infection and even cognitive skills will suffer.  A well-balanced diet can be manageable 10 months out of the year, but it's those pesky last 2 months that throw your diet train off the tracks.  Well-meaning relatives will always want to fix you a plate to take home with you, for "tomorrow," but we all know that plate of food will be gone before bedtime.  Eating later in the evening is also not good for your health, as your body will store those calories as fat and gain weight rather than burn it as energy.

Remember, that calories can also add up when consuming alcohol, and there's plenty of that to go around during the Holidays.  Stay away from the hard liquor as it tends to have more calories than beer and wine.  If you drink beer and/or  wine, make sure you do so in moderation for two reasons...the calories, and if you are driving, know both your state's legal limit, as well as your own.  What amount of alcohol might meet that legal limit in one individual, might not in another.  Know.  Your.  Limit.  People who normally don't consume alcohol, or very little of it, often find themselves in situations over the Holidays where they've consumed more alcohol than intended, but they've driven to the office party, and now highly doubt they can drive home.  NEVER "think" that you can drive home!  If you are having to even think about whether you should or shouldn't, then you shouldn't.  There are taxi cabs, Uber, Lyft, and the infamous call to a friend, who can get you home safely, without putting yourself, or others, in danger.        

Wishing everyone Happy Holidays, and Healthy Habits!

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Military & Medical Issues

November 11, 2017

On this Veteran's Day, I would like to thank all our Veterans, our military still serving this country, and especially those who have given their lives so that we may enjoy Freedom...

When we picture those in the military we normally envision a man or woman, in combat with the enemy in some foreign country.  However, sometimes the enemy is within our military personnel, which can be just as dangerous.  For obvious reasons, the men and women in the military, wherever they may be, experience a tremendous amount of stress...stress that we can never know, or understand.  As like most people, they too might be quick to blow off any medical symptoms as stress-related, therefore, not seeking medical advice.  Those is in the military are more prone to not seek  medical attention, as it appears weak, and they have to remain strong in order to do the job they signed up for.  Seeking out medical attention is never a weak act, but one of bravery, as you never know who the enemy is, or what the enemy might look like...heart disease, cancer, diabetes, high blood pressure, lung issues and more.

For those of us not in the military, the disease itself is the enemy within us, not on a battlefield.  But for some military personnel, they find themselves fighting two separate battles at one time.  

At a heart disease conference I had the distinct pleasure of meeting a wonderful young lady who had served in the military, but was now involved with the Pulmonary Hypertension (PH) Organization.  I asked her what was the determining factor for her leaving the military and seeking out employment within the medical field.  Her story is amazing!  She was in the middle of battle with her unit, staying out of sight of the enemy, when she felt like she wasn't getting enough air, and initially thinking she was just experiencing stress due to her environment.  At one point she suddenly stood up began tearing at her uniform, taking piece by piece of her uniform off in enemy territory, putting both her and the others in her unit at risk.  Although she was very aware of this, she was more aware of the fact that she couldn't breathe and was not getting any air into her lungs.  As the others helped her to dress down to nothing but her underclothing, the leader called in for a medi-vac to get her out of harm's way.  She was evacuated to the closest hospital, where they didn't have the equipment necessary to treat her, could only stabilize her but not for long.  She was then flown to Germany, where the decision was to fly her back to the states, but doubted that she would make it there alive.  This brave lady had what is known as a rare form of PH called CTEPH, associated with right ventricular dysfunction.  Although the death rate is high from this form of PH, the good news is that it's curable, unlike all other forms of PH.  She received the necessary surgery to correct the problem, and after receiving an honorable discharge, she joined the PH community, becoming a strong patient advocate for CTEPH.  I am happy to report that today, she is not only healthy, but happily married, and has a beautiful baby boy.  She is one of the bravest people I know, and I am honored to have met her and call her my friend.

There are many medical issues associated with just being a part of the military, and ones that usually end their military careers:  PTSD, depression, amputation, traumatic brain injury, just to name a few.

So, today, on Veteran's Day, let's all seek out a veteran, or someone still serving this great nation, and thank them for their service to our country, as they give so much more than we could ever even imagine...God Bless the USA! 

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Finding a Support Group

November 8, 2017

Support Groups are not for everyone.  Many people find their health issues to be one of a private matter, and not for other's ears.  Then, there are others, like myself, who want to talk to, and tell, everyone about my health issues.  Not because I want sympathy, but because I might just be helping someone else without them ever even asking for it, or, they might end up with some form of knowledge, therefore helping me out.  Silence is not always golden!

The U.S. is much farther behind in the scope of Patient Advocacy, but is at least moving forward and catching up with other countries.  There are many support groups for different diseases, some for dealing with chronic diseases, and others dealing with terminal illnesses.  The internet is a wonderful place to begin looking for a specialized support group centered around one's own disease.  There are also large organizations available for discussion of diseases such as heart disease, lung disease, diabetes, cancer, and many more.  Most of these meetings are held in hospitals, but churches and other organizations are now beginning to open their doors as well.

By becoming involved with the WomenHeart organization based out of Washington, DC, I eventually after going through extensive training at the Mayo Clinic in Rochester, MN, began a WomenHeart Support Group, in the greater Nashville area, for women living with or at risk of heart disease.  The first year was almost a complete bust, but I wasn't about to give up, as heart disease is the number one killer of women, and I knew they were out there, I just had to find a way for them to know where I was at.  Eventually, by talking to everyone I came into contact with, and having the church where I was holding the support group meetings place the meetings in their church bulletin and on their website, was able to begin building a support group that lasted until I couldn't any longer.  I eventually, after 4 years, had to turn over my leadership of the support group, due to my own health issues, to one of the attendees, who had also trained at the Mayo Clinic, a requirement in order to lead the group.  

Even though I moved back home to Cincinnati, Ohio, I remain loyal, and stay in contact with, those ladies who were not just attendees of the support group, but who became my friends, and my second family.  We all stay in touch, and I continue to forward the Mayo Clinic's Heart-Healthy Newsletter to all of them, even though I've been back home for over a year now.  When I visit Nashville, we all meet for lunch and a good time is had by all...we laugh a lot, and there's always tears when saying goodbye, but they are tears of love, not sadness.  

Support Groups supply not only support regarding an illness, but also emotional support, resulting in bonds of friendship lasting often for a lifetime.  I will carry "my" ladies in my heart forever!  

There are more health care support groups for women than there are for men, but it is my hope that more men will step up and become involved in beginning their own support groups.  Yes, it is a well known fact that women like talking about issues that men are not so willing to talk about, but I want to say to any man reading this, that you might just want to begin speaking up and out, as heart disease is the number one killer of men as well.  I encourage some man, strong in the knowledge of who he is and what he has to offer to other men, to start a Support Group, for whatever disease, TODAY!!  Sadly, tomorrow might be too late...

If you are an introvert, and the group setting is not for you, it doesn't mean that you can't join a group.  I provided, and still do provide, a few ladies who were introverts, support through phone calls, emails and even meeting one-on-one, in an effort to help them seek information regarding their disease, and to let them know I would be there for them 24/7.

To all patients, I would like to say, you don't have to be alone in your struggles with health care.  There is help out there, and help that is not a one-size fits all help, but one that is meant just for you.  I promise you, you won't be sorry, and who knows, you might just make a friend or two, or as in my case, find a second family!

**Medical Advice Should NEVER be given out by any Support Group member, unless it is through a Medical Professional**

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Is This Medication Right For Me?

November 7, 2017

Your doctor hands you a prescription for your new diagnosis, saying that it's worked miracles for other patients.  But, does that mean it will be a "miracle worker" for you?  This is the million dollar question...literally, with the cost of prescriptions today!

Even two patients with the same diagnosis, may have completely different reactions after being given the same medication, and probably not experience the same end results.  There are so many factors that play a part in why a  medication works for one patient and not another.  Other medical issues; age; gender; weight; healthy or unhealthy lifestyle; and the interaction of medications taken in conjunction with the new medication, could be why.  These are just a few of the reasons why patients with the same diagnosis might have a totally different reaction and end result from taking the same medication.

Medications come with information including wording like "if you have diabetes, this medication may have the following negative results..."  Your doctor should know all of your diagnoses, and therefore be well-able to determine if this newly prescribed medication could have possible negative results due to other medications being taken, and/or other diagnoses.  Much like a "second opinion," make sure that you read the paperwork that comes with your new medication...that's what it's there for.  Also, getting online to research even a little more can't hurt, as long as you're on a legitimate medical website.

I was given a medication that was initially FDA approved for erectile dysfunction, but was also found to have positive results for pulmonary hypertension patients, therefore, making this drug an off-label drug, one that my cardiologist wanted to try for my pulmonary hypertension.  I left my cardiologist's office with the samples, laughing all the way to my car, hardly able to wait to call my daughters and girlfriends to tell them I was now on erectile dysfunction medication, when I didn't even have the body part it was meant to make erect.  After taking the new medication for two nights, as prescribed, I had excruciating heartburn, something I never have, for 5-6 hours both nights.  I literally felt as if I was going to die!  It wasn't like I could go to the emergency room telling them I was there for heartburn, and knowing full well it wasn't a heart attack.  I called the cardiologist's office on the second morning letting her know the extent of my side effects, and that I would NOT be taking even one more pill.  Patients who took this medication for it's original purpose probably never had this side effect, but because the medication was an off-label drug for me, the side effects were yet to be known in their entirety.

The worst part of it all, was that this new medication was my last-chance medication for my pulmonary hypertension for which there is no cure, leaving me these past two years without any drugs in my system that would stabilize the disease or buy me more time.  I have to believe that another new medication will soon be on the horizon, keeping my pulmonary hypertension stable for as long as the first drug did (4 years), as time is of the essence.  

If I'm blessed to have yet another drug come to light, I won't care if it's for erectile dysfunction, or hair loss, as long as it works with little to no negative side effects.  I still might have a good laugh due to the "nature" of the drug, but I will be an  extremely thankful patient while laughing!   

Laughter...the BEST medicine!

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Living With Chronic Illness & Employment

November 6, 2017

You graduate high school, go off to college, maybe further your studies to include a Master's, PhD degree, Law or Medical School, all the while carefully choosing courses that will help you secure a job that you both want and need.  

Soon after getting settled into your first job, the wife and kids aren't far behind, which means more mouths to feed, and more financial responsibility.  Life's moving along smoothly, then BAM!!!!  The phone rings, and the person on the other line isn't your wife, or your friend, but your doctor that you saw just two days ago.  At the age of 45, and having never received a call from your doctor before, a knot immediately ties in your stomach.  What follows after is nothing more or less than a blur.  

After leaving work begging off sick, which you now really are, you drive for hours without direction until you find yourself in the driveway of your home.  You bring your wife and young teen children into the living room, carefully picking your words, trying to remain strong, but in the end, you all are formed like a football huddle, crying.  You lay in bed that night wondering how the golf-ball tumor in your brain will change your life, and if you're even going to have a life.  

After much discussion it's decided that operating is the only choice even though there are risks.  You've gone on medical leave at work, and that last day you walk the halls passing  your fellow co-workers who are wondering if you'll ever be back, or if you'll even survive.  It's like a walk to the death chamber.  Two days later, with your hospital gown, booties and surgical cap on, you say your goodbye's and I love you's with your family, reassuring them that you'll see them after the surgery, but thinking the whole time, this might just be it.

The surgery was somewhat of a success, but due to the tumor's location, there is much rehabilitation to follow, and expecting a full recovery appears futile.  Five days later you're home but need the help of your family to maneuver through a house that you used to be able to walk blindfolded.  Just when you think you're grasping everything that has happened in such a short period of time, you realize that your mail has now doubled in it's size which is due to all of the medical bills.  Insurance is not paying as much as originally thought, and there are some questionable charges to deal with, not to mention wondering how long you'll even have medical insurance.  Dealing with all of this becomes a full-time job, which will be the only full-time job that you will ever have again.  Now chronically ill, although grateful to be alive, the stress becomes overwhelming.

Enter the patient advocate, who encourages the patient to go back in time, and think about any other careers he considered pursuing, other than the one he or she had, and one that could be accomplished from home.  Withdrawal from not being able to work outside the home can be very emotional.  Your self-worth is questioned, and there will be some, possibly even family, who question whether or not you are truly unable to work outside the home...OUCH!!  

My story of medical issues leading to my being unable to work outside the home, came on slowly, but when it happened, it happened overnight, and it was such a blow to who I was, and all that I still wanted to be in my life.  Then I remembered how hard it was for me to go from running to walking due to my illness, but I did it...why then couldn't I do the same thing with my career?  I had always wanted to be an Author, so I became an Author.  No, I do not have a book on the Best Seller List, maybe a few in scattered library's and small book stores, and not even close to becoming the caliber of author that I wish to be, but I have plenty of time to work on that now that I work from home!

I also, due to my illness, for the past 10 years, have worked my way up very quickly from a local patient advocate to a national patient advocate, working with numerous health agencies out of Washington, D.C. including the Department of Defense's Medical Research Team and USA Patient Advocacy Network.  I also, when able to travel, testify to members of Congress regarding all health problems, but mainly Women & Heart Disease, as that is what I suffer from, along with Pulmonary Hypertension for which there presently is no cure.  I've learned to work with what I have now, not what I used to have.  Illness sometimes forces us out of our comfort zones, and for that I am grateful, and I know that the work that I do now is exactly the purpose that God had in mind for me all along.    

If you are chronically ill, you might be down but you're not OUT!!!!

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Why Family Medical History Is Important

November 1, 2017

A family medical history is a record of health information about a person and his or her close relatives.  A complete record includes information from three generations of relatives, including children, brothers and sisters, parents, aunts and uncles, nieces and nephews, grandparents, and cousins (Genetics Home Reference/Oct 24, 2017).

One of the strongest influencers when it comes to understanding your own risk for health issues i.e. heart disease, cancer, diabetes, stroke, and more is your family history.  Many individuals believe that screenings for those issues that other family members have been diagnosed with is a waste of time, especially if they feel great and consider themselves to be healthy.  However, it is better to be proactive rather than reactive, and screenings can help you do that, by detecting a medical issue in it's earliest stage.  Just by having a close family member with one of these diseases, increases your risk of developing the same disease, but does not necessarily mean that you too will suffer fall into the same well.  

There are a variety of factors, other than that of family history that can cause heart disease, cancer, etc.  Genetics, lifestyle behaviors, environment, diet and not living an overall healthy lifestyle, can all greatly determine whether or not you end up being diagnosed with a chronic illness.  One factor rarely discussed however, is that of the idiopathic factor, which means "no known reason."  This is the category that I fall into for my lung disease, Pulmonary Hypertension, and several of my chronic heart issues.  When people ask me how I'm doing, I always respond with the same old "it's not easy being me" line, and not for sympathy, but because I fall under the one factor, regarding my illnesses, that can't be changed by diet, exercise, lifestyle behaviors, and can't  even blame it on genetics.  And it's not lost on me that the word idiopathic is only one letter shy from spelling out the word "idio(t) in it.

For the normal person, however, it is vital not only to your health, but whether or not you live out a full, active, healthy life.  This is not a dress rehearsal, and you only get one spin on the wheel of life.  If you've been dealt the family-history-of-illness hand, then work with your doctor in making sure that you're doing everything you can to not become them.  If you just haven't taken care of yourself in a way that would be beneficial to your health, then do those things you can do now to change the way you both feel and look.  

And if you are unlucky enough to be that certain someone, like myself, who has accumulated ido(t)pathic health issues, you still have to run the race alongside Father Time, so you might as well do it with gusto.  Still eat healthy, exercise daily, do NOT smoke and if you do STOP, then take a good look in the mirror and change all those lifestyle behaviors that cannot be good for your body, because you have no one or anything to blame it on...not even yourself. 

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Medical Errors Are Third Leading Cause of Death

October 31, 2017

Today is Halloween, but you know what's more scary than even Halloween?  Medical Errors - oh the horror!

Right on the heels of Heart Disease and Cancer, is Medical Errors, the third leading cause of death in the U.S.  More than 400,000 Americans die annually in part because of  avoidable medical errors (2013 Journal of Patient Safety).  And this is despite additional provisions to the 2010 health law, which added emphasis on the quality of care, yet still carries risks.

Some hospitals have rules that require a patient to be informed immediately if a medical error has occurred, as well as to why it occurred.  Do all hospitals follow this rule?  No.  Why?  Usually out of fear of a patient, or family members of the patient, filing a malpractice, or wrongful death, lawsuit.  Research has shown that patients or family members, are more likely not to sue when a doctor or hospital places transparency above profit, and admits to a  medical mistake.

Not all medical mistakes are as cut and dry as those where a patient's left leg, due to diabetes, is to be amputated, but wires somehow got crossed, and the right leg gets amputated instead.  Then you have those cases that are not so cut and dry, and trying to get to the truth is like being Dorothy in the Wizard of Oz and trying to find your way back home, or in this case, to the truth.  It's like that saying about Vegas, where "what happens in Vegas, stays in Vegas."  Only now the words change to "what happens in the operating room, stays in the operating room."  Trying to get to the truth is like trying to locate a needle in a haystack.

Patient advocacy and safety groups are pushing for all hospitals to adopt rules that would require the doctor and hospital to admit their wrongdoing.  However, even with an admission of committing a medical error doesn't always mean that they will own it.  Telling a patient, or family, that a medical mistake was made is one thing, but saying it was unavoidable is another.  This happens more times than not, as a side note to accountability.  

Obviously, if the patient dies due to a medical error, the patient pays the ultimate cost...death.  But who pays financially when a patient is injured or dies from a medical mistake?  Where to start?  Private and employment-based insurance companies, patients, families of patients, and taxpayers.  There are cases where hospitals have stepped up and paid all medical costs when a medical error has occurred, but this is highly unusual.  It usually takes a the threat of, or actually filing of, a lawsuit to place the financial burden on the doctor and/or hospital.  But most patients, or family members, don't know the first thing about how to go about suing a doctor or hospital.  I was one of those family members when my father died from a botched colonoscopy.  Lucky for me, I'm a quick learner, and began immediately researching deaths due to medical errors, which lead to finding an attorney, after being turned down seven times prior to finding one who would.  These types of lawsuits are extremely hard on a patient, or family member, due to the time required to put all the pieces together...going through piles and piles of medical records and bills, insurance policies, finding/hiring/communicating with an attorney, depositions which might mean travel, but worst of all is reliving the event over-and-over again, without the benefit of being able to grieve until the whole process is over.  It normally takes 1-3 years for a case to even make it into a courtroom, if a settlement has not been reached prior to, and even if it does make it into the courtroom, there is no guarantee of a win.  In fact, winning a malpractice and/or wrongful death case is extremely hard.  I should know...we lost, and I lost my dad all over again.

Another option, less time-consuming, with no monetary gain, but an attempt to find justice, is to report the doctor or hospital to your state's Medical Board, which is what I did after losing the lawsuit.  I wrote a ten-page report, which they accepted and investigated.  A year and a half later, they were hesitant in agreeing with the court, but did.  Once again, I was left empty-handed in the justice department, and soon after, when there was nothing else to be done, I  began Grief Counseling in order to deal with the grief that I had put on hold for 4 long years.

I highly suggest that if you have lost a loved one to a medical error, and like myself, have exhausted all available outlets for seeking justice, do yourself, and your family, a favor and attend a Grief Share Program in your community.  Most churches now offer Grief Share, and no, you do not have to be a member of the church.  It won't bring back your loved one, but it can begin the healing process.  I can now look at the many framed photographs of my dad that decorate my home, and for the first time, in a long time, I smile at him, knowing that we both are finally at peace.

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Who Is Responsible For Patient's Release From Hospital?

October 27, 2017

Clear communication between a patient and their doctor upon their discharge from the hospital, whether it was a hospital stay, procedure, or surgery is imperative.  If a doctor does not do the actual releasing of the patient, then there is no clear communication.  All patients have a right to be treated with respect, receive clear and concise explanations about their condition, and what to expect once they are back home.

A patient's fundamental rights include: knowing all the information pertaining to their health care, which includes, but not limited to, knowing every aspect of their health care, whether or not it was a hospital stay, testing, procedure, or surgery.


Health care used to mean just that... caring about the patient's health, from beginning to end.  So many doctors today see their patient's during admission, or prior to a procedure or surgery, but no longer feel the need, or responsibility, to see their patient after.  Patient's have the right to know the results of their tests, procedures, or surgery.  Some nurses release patients for the doctors, but I have yet to know of one nurse who could answer all of my questions, which is not their fault, as they are just doing what the doctor has told them to do, even though they did not have any part in testing, procedures or surgery.  

Questions like, "What, if anything did you find that I need to be aware of?  Did you perform any procedures that were not discussed, and if so, what were they?  Did you remove anything, or implant a device?  When can I go back to work?  I have a vacation planned next week, is it okay to fly?  What were the final results?  Should I follow up with you?  These are all very important questions, and more, that should be addressed by the doctor, not the nurse, as the doctor was the one doing the testing, procedure, or surgery.  It would be like picking up your car after it's been worked on, and having the receptionist attempt to inform you of exactly what the mechanic did, or did not do.  It only stands to reason that you would want to speak with the mechanic.  Without doing so, both scenarios could have serious ramifications, resulting in either injury or possibly even death.

The only logical reason for a doctor not to speak directly to a patient being released, is if that patient has passed on.  Even then, doctors are expected to at least speak with the family members of the deceased, letting them know what occurred during the testing, procedure, or surgery.  Understanding plays a huge part of the healing process whether it's for the patient or the surviving family members.

Some doctors charge your insurance, and/or you, a discharge fee, even when they are not the ones personally  discharging you.  If you do not see your doctor upon discharge, make sure you get with your insurance company letting them know not to pay for a discharge fee should one be sent.  Doctors should only get paid for what they do, not what they don't do.

Maintaining a patient's health after discharge plays a significant part of the overall care plan, yet there is surprisingly a lack of consistency in both the process and quality of the discharge itself, and planning across the healthcare system. This process needs to be greatly improved upon, and I highly suggest to any doctor that they participate in person during the discharging process of a patient. Do No Harm. By not engaging personally in a discharge of a patient could endanger a patient's aftercare, thus blowing that Do No Harm oath right out of the water.


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Antibiotic Controversy

October 26, 2017

When both of my daughters were just toddlers, it seemed as if every other week one of them had an ear infection, sore throat, fever, runny nose, cough and/or sneezing.  Being a good mother, I immediately made an appointment for them, and every time we left the pediatrician's office, it was with a prescription for an antibiotic.  After all, I was only following that medical care of my parents after I was born in 1953.

Now, as a patient advocate, I wish I had known more when I was the parent, and not have been so quick to jump on the antibiotic wagon like every other parent.  I'm also left to wonder if maybe I should have waited out their colds, as there is no cure for the common cold, to see if it would run it's course rather than putting a foreign substance into my daughters' systems.

There was no controversy regarding antibiotics in those days, but the question of whether to take, or not to take, these days, looms large over all parents with children exhibiting signs of a cold. 

Antibiotics, first used in the 1940s, were certainly one of the great advances in medicine. However, overprescribing, and overuse of, them has resulted in what is known as development of resistant bacteria.  This means that colds, flus, ear infections, etc., no longer respond to those antibiotics that may have worked in the past. In addition, whenever a patient takes antibiotics they run the risk of side-effects, such as stomach upset, or even an allergic reaction.

There are two major types of germs that can make people sick: bacteria and viruses.  Bacteria are living organisms existing as single cells.  The majority of bacteria are not harmful, but some bacteria are and can cause illness by invading the human body, multiplying, and interfering with normal bodily processes. Antibiotics are effective against bacteria because they work to kill these living organisms by stopping their growth and reproduction.  Viruses, on the other hand, are not alive and cannot exist on their own.  The body's own immune system can fight off some viruses before they cause illness, but others (colds, for example) must simply run their course. Antibiotics do not work against viruses.

So the question now becomes how to tell the difference between illness due to bacteria, or illness due to viruses.  Sometimes both can have such similar symptoms, that it takes a pediatrician/physician well-versed in recognizing the differences to decide on whether or not an antibiotic is necessary.  Parents are responsible as to whether or not their child should take an antibiotic, where an adult can weigh their own options and have a voice when it comes to taking an antibiotic or not.

Always seek the advice of your child's pediatrician, or your own physician, depending on who is ill, and don't be afraid to ask questions.  Ask if it is bacterial or viral, and discuss the risks and benefits of antibiotics. If it's a virus, ask about ways to treat symptoms. Bodies can become immune to the use of antibiotics and are not always the answer.  Never demand that a doctor prescribe antibiotics just for the sake of instant gratification.  It could backfire on you and/or your child.

How can you help to fight antibiotic resistance?   There are simple steps to prevent the spread of infections. Always wash your own hands several times a day, and encourage the importance of hand washing for your kids.  Some believe immunizations are the answer, but that's a whole other topic for another time.  For the sake of other kids, keep yours out of school when they're sick, and if you are an adult, don't go to work...please!

Having both been exposed, and exposing my children, to the overuse of antibiotics, I am presently not a strong proponent of antibiotic use, and I'm left to wonder if all of those antibiotics for most of my natural born life is the culprit behind my heart & lung issues...the jury is still out on that one.  Once again, another issue for another time.

Educate yourself and then choose wisely to use, or not to use, antibiotics!


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When You're Not The Patient

October 25, 2017

October 25, 2017

Taking someone, family member or not, to the hospital for testing, procedures, or even surgery is a big responsibility.  It's not just driving them there without being in an accident that is concerning, but about knowing exactly what to expect, and what your responsibilities are as the designated driver and attendee.

As a national patient advocate I felt very confident as I drove a good friend to a surgical elbow procedure yesterday, and felt I had a pretty good grip on what to expect, and felt prepared to ask and answer any and all questions.  Normally, the person with the individual having surgery, is invited back once the patient has been prepped for surgery.  I had a few questions as to what he should expect during the surgery, but neither of us was never given that opportunity.  After approximately 2 hours, I was told surgery went great and directed to a room in which to speak to the surgeon.  The surgeon briefly explained what he did, with the only directions that he, the patient, should not lift anything with his right arm, the one operated on, for at least six weeks, and then he was gone as quickly as he appeared, with me being directed back to waiting area.

I was eventually called back to the Recovery area, where my friend was awake, but not so much aware, due to being put out completely by the anesthesiologist.  We joked about his lack of awareness at first, but then it, as it should, became serious about directions, limitations, signs and symptoms that something might be wrong, medications prescribed, and other important issues involving what to expect after the surgery once home.  Even the most minor surgeries can become lie-threatening in a matter of minutes.  The nurse did a fantastic job of relating all of these to both of us... one aware, one not so much... reiterating most of the information more than once.  I asked when was the surgeon going to come in to discuss exactly what he found, and what he had done to repair the damage.  Good thing I wasn't holding my breath, as he never came.

The surgeon's duty does not end at the end of the surgery.  He or she remains responsible for postoperative care.  Best practices confirm that the surgeon is to follow up, and to determine patient's condition until discharge from hospital.  Surgeons should always follow up with the patient after surgery for a reasonable period of time in order to explain what occurred during the surgery.  

When my friend said he only saw the surgeon before operation, but never after, I was obviously curious as to why not?  Being a patient advocate, I knew to take notes, as few as they were, during the discussion between myself and surgeon after the surgery.  This was a good thing, as my friend had no idea as to what the surgeon found, and the what the procedure was...how could he?  He was out.

Surgeons and Physicians need to understand the legal nature and ramifications of not following those steps in following up with the patient themselves, as it could lead to a lawsuit should the patient incur adverse effects of surgery.  The onus falls solely on the shoulder of the surgeon, not the nurse giving out the instructions, should after-effects take a turn for the worse.  If I were the surgeon, I would CYA (cover my ass), and want to be the one delivering the news of what occurred during the surgery, the precautions, adverse effects to be aware of, etc. as the nurse would not be held accountable should there be future issues, but I, the surgeon, would.  Complacency and cattle calls have become the norm...profit over patient.  

Case in point:  the surgeon, according to my notes said that my friend didn't need anyone with him once home, but the nurse's instructions emphatically stated that someone should be with the patient for at least 24 hours after the surgery.  I've only been released once without a physician present, and after complaining to both the hospital and the cardiology group he was with, the cardiologist was fired within a month.

I explained to my friend once he was released, that he needed to check with his insurance to see if the surgeon had charged him for a "release fee."  The surgeon did NOT release him properly, so therefore he should not be paid.  Sadly, this happens more times than most patients know.

Even though you are not the patient, but someone who is the responsible party for the patient, during hospital stays, testing, procedures, and surgery, you will need to know and understand the importance of the illness, test/procedure,/surgery, as well as asking questions, and getting answers... the life of someone you care about just might be at risk.

The only stupid question is the one not asked...



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You Are What You Eat

October 24, 2017

When I was much younger, I never gave too much thought to what I was eating, how I was eating it, and what it meant for me health-wise down the road.  The same held true for what I was buying as I cruised the aisles of the grocery store.  After all, I was 5'2" and weighed 95 lbs, so what was there to worry about?  Had I known then what I know now, a lot!

I bought soft drinks, chips, cookies, cake mixes with lots of icing, chocolate of any kind, which can be good for you in moderation, steak, pork chops, etc.  But I also bought a mix of good foods, i.e. greens, fruit, vegetables, and water, which in no way negated the bad food I was putting into my younger body and that of my family.  Ironically, my heart issues are congenital for the most part, and have nothing to do with what I was consuming, but I'm pretty sure it couldn't have helped.  But for most individuals, eating properly can mean the difference between a healthy heart and a broken one.

Metabolism, also known as Metabolic syndrome is a cluster of conditions i.e. high blood pressure, high blood sugar, excess body fat around the waist, that occur together increasing risk of heart disease, stroke and diabetes. Genetics come into play, regarding obesity, however genes do not always predict future health issues. Genetics and eating behaviors can both be attributed to a predicted health future. Responsibility for one's self is not an easy task when factoring in metabolism and genetic issues, which are a reality for many people, but can in most cases be overcome. 

The first book I ever read on nutrition was the Perricone Diet, written by Nicholas Perricone, M.D. who is a respected physician, award-winning research scientist, and trusted expert on health and beauty.  At the time, his book was touted as the biggest breakthrough in weight loss since the Atkins Diet.  I began following Dr. Perricone's diet as closely as possible while working full-time, running two children between their extra-curricular activities, and working the farm, literally.  When I began noticing positive changes, both physically and mentally, I was impressed.

Then, life changed, throwing me a curve ball, and sending my new-found diet into a tailspin.  Marital issues, eventually a divorce, despair, financial issues, and all that comes with trying to take back control of a life that I had lost control of somewhere along the way, has a way of changing everything about one's life. This change did not come in a neatly-packaged box, and there definitely wasn't a pretty bow attached.  Fast-food became a way of life, and at one point, not eating at all was the new norm... who had time?  Single mom, working to feed two mouths, and clothe three bodies.  I literally lived off of M&Ms, alcohol to relax, and fast-food, when time allowed, for about six months before ending up in the emergency room.  Something had to change.  That something was me.

I began making time to eat, and eat healthy, then became seriously involved in working out and weight-training, even competing once in a body-building contest.  There were some years of diet yo-yo'ing, but eventually I got back on track for good, which luckily for me was always an easy thing to do.  For others, not so much.  Salmon, blueberries, salad, tuna, yogurt, pasta, vegetables, water, fruit, with occasional wine, have become the staples of my nourishment, and it has felt great to have control again.  Although I still ended up with heart and lung issues, I firmly believe that the only reason I am still here, is due to choosing to eat healthy, helping to build up a stronger, more resistant body. 

I had a friend tell me several years back, how she just couldn't understand why she wasn't losing weight.  She was biking, walking, going to the gym, but her weight just kept increasing.  So, I asked her about her eating habits.  She admitted that she was lax in this area and then asked if I would come over and go through her pantry and refrigerator and help her weed out the foods that were bad for her.  O.M.G.  I want to preface this story with the fact she was single and lived alone.  On her kitchen counter were freshly made brownies and a chocolate cake, frosting and all.  The refrigerator door would not close all the way due to all of the food pushing the door out, and the food inside was anything but healthy.  Then I opened the pantry, as she stood there  wincing.  Again, O.M.G.!  Cookies, more cake and brownie boxes, candy, a variety of chips and salsas, not to mention a stash of Heineken that could get a party of 20 people good and drunk.

We cleaned out her pantry and fridge together, placed food items to be donated, at least what wasn't expired, and then sat down at her kitchen table and made a list of healthy foods that she would at least consider eating.  It's like exercising.  Find something you like to do and you'll do it.  Find something you like to eat and you will eat it.  Buying healthy food is one thing, but eating it is another.  I put in bold print at the top of the paper, that we had completed together, if it's not here, you can't eat it!   Yes, true, she could then go out and get a pizza or fast-food, but there was only so much I could do.  Her embarrassment was not lost on me, so I treaded as lightly as possible, but remained firm.  As I hugged her goodbye, I told her, "if you want to see a change, you have to BE that change!"

At the end of a year, after we had tore through her kitchen like tasmanian devils, she had lost approximately 50 lbs, which she needed to do, and had gone down several sizes.  She was glowing.  I moved away shortly after, and the next time I saw her, which was years later, she had not only packed on her original pounds, before that weeding-out session in her kitchen, but even more.  I know she saw me, but she quickly turned and headed in the other direction.  I have yet to see her again.  My heart just broke for her, leaving me to pray for her health, as neither of us was getting any younger.  

The truth is, we are what we choose to eat... choose healthy!

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The Importance Of Being An Organ Donor

October 23, 2017

Being an organ donor, I am still in awe over all the controversy that still surrounds the issue of organ donation.  It's not that I don't see the other side of the coin, where individuals are afraid that a doctor, or even family member, may pull the plug when there's still a chance at life.  Having a Living Will and/or Durable Power of Attorney for Health Care, with a trusted family member listed as the decision-maker, can help ease a patient's mind in making sure that all of their wishes, including organ donation, be upheld.  I possess, along with my Will, both of these legal documents.

Life-sustaining treatment means any medical procedure, treatment, intervention, or other measure including artificially or technologically supplied nutrition and hydration that, when administered, will serve principally to prolong the process of dying.  A physician can determine whether or not the condition of a patient is considered "terminal," and a second opinion is normally conducted, but if not, one can be requested regarding the patient's condition.  

Terminal condition means an irreversible, incurable, and untreatable condition caused by disease, illness, or injury to which, to a reasonable degree of medical certainty as determined in accordance with reasonable medical standards by an attending physician and one other physician who has examined the patient, that there can be no recovery, and that death is likely to occur within a relatively short time if life-sustaining treatment is not administered.

My designated family member knows my wishes should I become terminal.  I opted for a Do Not Resuscitate, under these conditions, and these conditions only, so that I might be allowed a natural death.  I also have a second, back-up family member in case the first family member is unable to make this decision for me when the time comes.

Although my driver's license shows that I am an organ donor, I also have in writing, and notarized, that my heart, which due to all of my heart conditions could not be considered as a viable organ for another person, be donated to the Cedars Sinai Barbara Streisand Women's Heart Center in order to further research in the area of women and heart disease.

When my daughters were too young to make an organ donor decision for themselves, my then husband and I made it for them.  After much discussion, we made the decision that both of our daughters would be organ donors should we ever lose them.  This was in no way an easy decision to make, and I have been blessed to never have had to make that decision, but if I would have had to, I would have done so knowing that even though I had lost the most precious gift that God ever granted me in this lifetime, that another parent's child would have a chance to live.  Actually, in today's world we see where numerous individuals receive organs from the deceased, of all ages, which means saving even more lives.

My daughters are both grown now, with children of their own, and they too are organ donors, and have let us know, in no uncertain terms, that we had made the right decision for them when they were small and had no voice in whether or not their organs were donated.  I now pray that they never have to make that decision for their own children, my grandchildren.  But if they do...I know they will do the right thing, and donate every organ possible in order to save another child or human beings life, and I couldn't be more proud!

Be an Organ Donor!!  Sign up today at organdonor.gov  You could save lives by leaving behind the gift of life...

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Are The Side Effects Worth Taking The Drug?

October 21, 2017

Your doctor has just written a prescription for you, which you in turn then take to your pharmacy to be filled.  For some patients, they will tear open the bag, which has an attached paper stapled to it, throw it away, and take the drug as prescribed on the front of the bottle.  These patients have just thrown away the most important part of the prescription...the part that provides all of the side effects, adverse effects, and warnings from taking the prescribed medication.

The front of the bottle will give the name of the drug and milligrams; provide directions i.e. take twice a day, once in the a.m. and once in the p.m.; quantity in bottle; name of pharmacy and phone number.  Some bottles have, in fine print on the side or bottom of the bottle, a few of the possible side effects/warnings of taking the medication, but doesn't even come close to describing all of those side effects and dangers associated with the drug.  Thus, why the paper stapled to the bag with the prescription in it is so important to read and keep for your records.

You've now read the stapled paper to the bag, but did you really understand it?  Unless you are a medical professional, or pharmaceutical rep, you probably understood very little of it.  The fine print makes it hard to read, especially for the elderly, and the length of warnings, side effects, adverse effects, and more, can sometimes go on for pages.  Who has the time?!

Your physician may prescribe a drug that was approved by the FDA for a specific illness/use, but now has the potential to provide healing in other illnesses as well.  These are called "off-label" drugs, and make those side effects, adverse effects and warnings a moot point, as those effects and warnings on the drug were for someone else's medical problem, not yours, which significantly changes what you, as a patient, need to know when it comes to effects and warnings.  My cardiologist always lets me know if a drug she is prescribing is off-label, and let's me know what the side effects might be for me, and for my specific illness.  If your doctor has never offered up this information when writing you a prescription, you just might want to ask him or her if the drug is an off-label drug.

I will use one of the drugs (not off-label) I am presently taking as an example.  I cannot give out all of the information from the infamous stapled paper to the prescription, as most of it is not meant for the patient, but for physicians, pharmacists, as well as to cover the pharmaceutical company's ass should things go awry.  So I will stay with "usage, adverse reactions, side effects and additional warnings."


Usage - indicated for the treatment of chronic angina; may be used with beta-blockers, nitrates, calcium channel blockers, anti-platelet therapy, lipid-lowering therapy, ACE inhibitors, and angiotensin receptor blockers.

Possible Adverse Reactions - cardiac disorders (bradycardia, palpitations); Ear and Labyrinth Disorders (tinnitus, vertigo); Eye Disorders (blurred visions); Gastrointestinal Disorders (abdominal pain, dry mouth, vomiting, dyspepsia); General Disorders And Administrative Site Adverse Events (asthenia, peripheral edema); Metabolism and Nutrition Disorders (anorexia); Nervous System Disorders (confusional state); Renal and Urinary Disorders (hematuria); Respiratory, Thoracic, and Mediastinal Disorders (dyspnea); Skin and Subcutaneous Tissue Disorders (hyperhidrosis); Vascular Disorders (hypotension, orthostatic hypotention); Angiodema, Renal Failure; Eosinophilia; Chromaturia; Blood Urea Increased; Hypoesthesia, Paresthesia; Tremor; Pulmonary Fibrosis; Thrombocytopenia; Leukopenia, and Pancytopenia.

Side Effects - Dizziness, Lightheadedness, or Fainting; QT Prolongation (electrical activity of heart/irregular heart beat); Headache; Constipation; Nausea.

Additional Warnings - Avoid Grapefruit/Grapefruit Juice; if Dizziness, Lightheadedness, or Fainting do not drive a car, use heavy machinery, or do anything that needs you to be alert. 

(2013 Gilead Sciences, Inc.)

The above does not even begin to cover the six pages included with the prescription.  However, miracle of miracles, this prescription, Ranexa, not only has drastically decreased the number of angina events I once experienced, I have had "none" of the above side effects or adverse reactions.  And how do I know that I haven't had any of those side effects or adverse reactions listed?  I READ THE PAGES STAPLED TO MY PRESCRIPTION!  Had I had any one of those side effects or adverse reactions, I would have never associated them with my taking the drug Ranexa.

Every patient is different, so what might work for one patient might not work for another.  I can guarantee you that there will be prescriptions handed to you at one point in your lifetime, that after reading all of the side effects, adverse effects and warnings, you'll stop taking the drug before you ever get started.  That's okay.  Point in case.  If you are suffering from a pulled muscle, but the drug prescribed to treat it has side affects of kidney failure, liver failure, renal failure, heart irregularities, and even possibly result in death, then it's probably wise to not take the medication and work-out the pulled muscle, or seek physical therapy.  Be drug smart!

Even the commercials on television by pharmaceutical companies, offering up their latest and greatest drug, have to legally disclose side effects, adverse effects, warnings, which turns a 30 second commercial into a 5-minute one, not to mention that the announcer says each one at the rate of 767.269 miles per hour, the speed of sound.

Bottom line is, take the time to read all of the information, provided on that stapled paper attached to your prescription, even if you don't understand it all.  Skip the parts you don't understand, and go straight for the sections marked Side Effects, Adverse Effects, Warnings, and any additional information regarding the prescription that you, the patient,  might just understand.  Not easy, but doable.  

After all, God didn't promise us an easy life, just a life.  Make sure you're doing everything possible to make yours a long and healthy one! 

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Staying Mentally & Emotionally Charged

October 20, 2017

When you are a loved one are waging a medical war against disease, the toll on both the person who is sick, and the caregiver, can be mentally and emotionally draining.  If you don't keep your phone or computer charged, what happens?  They die out.  The same holds true for our bodies.  If we don't re-charge our emotional batteries, we too will die out, and in some cases literally die.

Emotions are very strong feelings which hold many powers over the human body, consciously or unconsciously. 

Unconsciously, emotions, both good and bad, can happen without us even giving them a second thought.  If we're happy, we usually don't give it much thought, or pick apart the reasons why we're happy...we're just happy.  If we're sad, the same holds true, only when we're sad, we're just sad without even having to know a reason why. 

Consciously, we make a conscientious choice whether to be happy or sad.  After a few tests, and a doctor telling you that the symptoms you've been experiencing are related to your heart, kidneys, liver, or lungs, and that further tests, and possible surgery might be necessary, is enough to send anyone's emotions into a tailspin .  It might be cancer.  You might need open-heart surgery.  You might need a kidney or liver transplant.  It is at moments like this that you, the patient, have the choice to be happy or sad.  Choosing happiness over this type of news, might mean a psych check is in order, as I don't know of anyone, including myself, who receives this type of news and responds with a happy face.  Reactions should correspond with the appropriate faces.  Good news = happy face.  Bad news = sad face.  In my experience, receiving bad medical news can only result in one face...a sad face.  

A perfect example of just how strong emotions can play a part when it comes to hearing bad news, especially one of death, is often found in elderly couples who have been married for 50+ years.  We hear of so many stories where one of the marital partners passes away, and even though the other marital partner is considered healthy, they too soon pass on, sometimes within hours of losing their life partner.  This phenomenon can only be attributed to emotions.  Willing oneself to die has been historically proven to be the strength of one person's will over their own body.  That's one strong emotion!

Doctors used to scoff at the term "Broken Heart Syndrome," but no more.  This term comes from a condition called takotsubo cardiomyopathy, or stress cardiomyopathy, and can strike even when a person is otherwise healthy.  You can die of a broken heart...it's a scientific fact.  There are established ties between mental health and heart disease.  An extremely stressful event, such as the death of a loved one, can have a drastic impact on one's heart.

A patient's mental state and emotional well-being can play a substantial part in how well you deal with a bad medical report, your progress, your recovery, and in some cases whether you live or die.  Mind over matter.  Well, my mind tells me that the quantity and quality of time I want to spend with my family and friends matter, so I choose to opt for the happy face :) 

When I'm Feeling Down

I Put A Smile On My Face

My Mood Follows Suit...



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Life Changes After Diagnosis

October 19, 2017

You've just received a devastating diagnosis...now what?  First step in this process is understanding and acceptance.  It's all of those pesky steps following the diagnosis of a chronic and/or terminal disease that are the hardest.  Questions come quicker than the mind can process.  Can I still be a good wife/husband; a good mother/father; continue to work at my present job, along with so many other questions yet to be both asked and answered.

When I found out the seriousness of my illness, I remember telling myself to breathe!  Breathe in...breathe out...repeat.  Take one day at a time, unless your diagnosis is time sensitive or dire, where hard decisions have to be made in record time...decisions that not only affect you, but your family.  I think that we all have a little martyrdom in us, where we truly believe we can handle this on our own.  We got it, right?  If we believe that, then we are in denial, as no one can handle a devastating medical diagnosis alone.  So we turn to family and friends for comfort and understanding, as well we should.

Most patients are very blessed to have family and friends who can, and do, comfort them during their time of need.  For others, there are no family or friends, and loneliness soon becomes a patient's best friend.  Some rally the wagons like cowboys of the wild west, forming a circle of protection, while others take their wagons and make a run for it.  This is just the beginning of the life changes, and challenges, you will face during the course of your illness.  It is because of the lonely that I've made it my life's purpose to reach out to other patient's in need, especially those who have no one to rally around them.    

There may be small changes, at least at first, such as not being able to carry a laundry basket from one room to the other, or just fixing dinner for a family of four can become  more exhausting than catering a meal for hundreds of people.  Depending on what your diagnosis/illness is, those life changes that follow can be subtle ones, or one's that hit you so hard upside the head that when you come to, your clothes are out of style.  

My life changes after being diagnosed with heart disease, and later pulmonary hypertension, began with unusual changes in how I participated in activities I once used to enjoy.  I no longer could run, only walk.  I no longer could hike, golf 18 holes, lift heavy weights, or keep up with others.  Going up a flight of stairs felt as if I'd just run a marathon, and cutting the grass with a push mower, which I loved doing mainly for the exercise, killing two birds with one stone, ended.  Just getting up in the morning, and getting ready for work, seemed insurmountable.  The fatigue was exhausting, my breathing quite labored, and that damn elephant sitting on my chest wasn't going anywhere anytime soon.  After six months into my new position as Executive Director of a large government agency, which I had worked so hard to achieve, I found myself having to take a medical leave, leaving me to wonder if I'd ever be able to return.  Six months later I was able to go back, but was definitely not functioning at 100%.  Six years later, I had to leave my position, and am now unable to work outside the home...life has changed.

Rarely does anyone, other than your doctor/cardiologist, want to discuss how your diagnosis affects your sexual life.  Family and friends, react by ignoring the subject as their faces turn beet red, even though sexual relations are a huge part of a marriage, one of which I'm no longer a part of.  Speaking from experience, it's hard to enjoy sex when your heart begins racing, you can't breathe, and you think that this is how you're going to die...having sex, with the paramedics finding you naked in bed.  When I do presentations someone in audience always asks the question "how has heart disease changed your life?" I always respond with this... "well, I used to sleep with a man, now I sleep with a blood pressure cuff, nitroglycerin spray, aspirin, cell phone, and print-out of my emergency medical information."  This usually gets a laugh, but sometimes the truth hurts.

What people don't understand, they tend to ignore, including the patient.  I find the worse I get, the less others come around.  I'm not feeling sorry for myself, just recognizing the obvious.  Some don't know what to say, others don't want to slow their own lives down for you.  This is the part that doctors don't tell you about, but that you find out on your own.  For me, I fill those lonely hours with my writing and helping other patients, all the while looking forward to those times when I am with family or friends.  For others, it can mean hours, days, weeks, or even months of being alone.  Patient Advocacy can help family and friends better understand what the patient's needs are, and there's nothing like a good dose of time with family and/or friends, to lift a patient up.  It actually works better than most medications!

I can't tell you how many times I have showered, dressed up in my best outfit, styled my hair, put the final touches on my make-up, just to realize that I'm now too tired to even walk out the door.  So, I slowly take my outfit and make-up off, let my friends know I won't be coming, and then put my pj's on, curling up on my favorite corner of the couch, which has now become my security blanket.

Yes, my life has changed drastically after receiving my diagnoses, but the one thing I still have is my life...am I blessed or what?

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Are You Controlling Your Stress or is Your Stress Controlling You?

October 18, 2017

Although stress is a normal part of life, it can also play a part in your death.  There is so much fear and uncertainty in the world today, so it's understandable that stress is as much a part of our lives as breathing in air.  

The top ten life stressors having the most impact in our lives are:

  1. The death of a loved one
  2. Divorce
  3. Loss of a job
  4. Increase in financial obligations
  5. Getting married
  6. Moving to a new home
  7. Chronic illness or injury
  8. Emotional problems (depression, anxiety, anger, grief, guilt, low self-esteem)
  9. Taking care of an elderly or sick family member
  10. Traumatic event, such as a natural disaster, theft, rape, or violence against you or a loved one


And to add to that list of life stressors, we now have to deal with violent protests, terrorists, nuclear threats, and mass killings.  Even if we are not directly involved in any of these acts of violence, the media makes sure that we feel that we were somehow standing right there in the middle of it when it happened.  Even though we as a public need to be informed, we don't need to see the actual bodies of those who have lost their lives in order to believe the numbers.

For years, work stress was at the top of the list, and going home was the one safe place we could look forward to at the end of the day to relax and regroup.  Today's home life is gaining ground however over that of work stress, coming in a close second.  We've lost our "safe place."  Homes are  now fraught with the turmoil of having two parents who work stressful jobs, children with little to no discipline or proper care, pop-a-top meals rather than nutritious sit-down dinners, family members with their faces glued to their electronic devices rather than on each other, undone laundry, all the while with families falling apart at the seams. 

Physical signs of stress can be: headaches, fatigue, difficulty sleeping, difficulty concentrating, upset stomach and irritability.  When you add long-term before the word stress, with no type of intervention, stress can lead to even more serious health issues:

  1. Depression
  2. High blood pressure
  3. Abnormal heartbeat (arrhythmia)
  4. Hardening of the arteries (atherosclerosis)
  5. Heart Disease
  6. Heart Attack
  7. Heartburn, ulcers, irritable bowel syndrome
  8. Upset stomach: cramps, constipation, diarrhea
  9. Weight gain or loss
  10. Changes in sex drive
  11. Fertility problems

And these are just a few of those medical issues that can arise due to unaddressed stress in our lives.  

Being a heart patient, I am fully aware that heart disease is the No.1 killer of both men and women, however, I look at it as stress being the No.1 killer of all, which in turn leads to the other No.1 killer of all...heart disease.  Stress is exactly what brought my dormant congenital heart issues, along with a few other heart issues, to the surface of my otherwise healthy life.  When I had my heart attack, my cardiologist didn't refer me to cardiac rehab, not because she didn't think of it, but because I was already doing everything, in the physical sense, to protect my heart.  Nor did she place me on a strict diet, as I was already on one due to a lifetime habit of eating properly.  Other than sending me back out into the world with medications, she emphatically told me that I needed to get the stress out of my life, or it would kill me.  Patients could benefit from more cardiologists, and/or doctors, sharing this information with their patients.   

Soon after, I did seek out a therapist who helped me sort through all of those professional and personal stressors in my life.  The end result was, I got a divorce, left a six-figure job in a bad economy, cashed out my pension, learned to live on less, moved to Nashville for six years and did what I had set out originally to do in my life...become an author.  I am now back home in a small Cincinnati community of 2,100 people, live in a large three room apartment in a tiny village square, spending my days writing, walking, but most of all being "still."  Don Henley of the Eagles sang it best with his hit song Learn To Be Still.  When we learn to be "still," it is only then that we can hear the birds chirp, the wind blow, the rustling of leaves, or the laughter of children.  There are stress management programs available, but for me I only needed to prioritize my life to get those unnecessary stressors out of my life.  

I am now happier than I have ever been.  Making those necessary changes in your life to reduce stress can also be stressful while in the midst of doing so, but in the end it will be so worth it...  your life depends on it!

Learn To Be Still...

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Transparency In Health Care

October 17, 2017

There is a lot of talk these days regarding transparency in health care, or should I say, lack of transparency in health care.  Access to information regarding price and quality of healthcare services enable patients to make better decisions about their own medical care.  More needs to be done in the area of health care transparency, and the sharing of health information between providers and patients.

The question becomes how do we come together in order to overcome the challenges of transparency in our own health care?  And herein lies the problem.  Trying to get BigPharma to provide clearcut pricing information regarding medications is like trying to rope an elephant.  Healthcare services in general, such as medical tests, procedures, surgery, are near impossible to get pricing on, even a ballpark figure.  This is not how it should work.  When a consumer has their car worked on, usually their first question is, "how much will this cost me?"  And the mechanic normally will give an estimate as close to the actual cost of fixing the car as possible.  Try doing this when the issue involves a medical cost.  Rarely will a medical professional give their patient even an estimate of what it might cost them, and the reasons for this vary.  Health insurance coverage, deductibles, copays, out-of-pocket costs, medical coding issues, often confuse the issue of medical pricing even further.

Pricing and the quality of a specific service can vary from provider to provider, and higher prices do not necessarily equate to higher quality of care.  Patients want, and need, to make better decisions when it comes to their health care, but with all of these variables in play, doing so becomes a full-time job.  

On the bright side, there are some providers in the health care industry who are now attempting to provide some transparency into helping the patient  come up with at least an estimate of what their out-of-pocket costs might be for a particular procedure, testing, or surgery.  Presently doctors bear no financial responsibility for the quality of care a patient receives, or doesn't receive, due to a fee-for-service system.  There has however been a shift to "accountable care" in recent years.  

While there are many definitions of accountable care, they all imply the shift in reimbursement from procedure-based, fee-for-service to fee-for-quality, disease or condition-based reimbursement with capitated payment to healthcare delivery organizations on a per-case and per-capita basis (healthcatalyst.com)  What does this mean?  In layman's terms, it means to reduce costs, improve quality!

There is so much more information I could provide on the issue of Transparency in Health Care, but for the sake of time, yours and mine, I strongly suggest that if you are having problems in the area of medical transparency, that you research the issue more online.  I won't lie, most of it, if you are not a medical professional, will go right over your head as it has mine, and I've been dealing with the transparency issue for over a decade now.  Only go as deep into your research as your issue calls for, but never stop questioning your providers, all of them, as they hold the key not only to your life savings, but your life!

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Finding the Humor

October 16, 2017

Finding the humor in having a chronic and/or terminal illness is not always easy, but nonetheless, can be accomplished.  It will always make others uncomfortable when you laugh in the face of death, but that's not your problem, it's their's.  

I recently came across a podcast called SickBoy, about a young man in his twenty's, who has cystic fibrosis, with a diagnosis of a short-term lifespan.  The videos of him, along with his friends, were hilarious, although they still had their moments where emotion set in.  Even though I am old enough to be their grandmother, I could not only relate, but requested to be on their podcast show...still waiting to hear.  I have always said that laughter is the best medicine, and these guys could be the poster boys for laughter in the face of adversity!!

I often get admonished by family and friends for making light of my ultimate demise, but that still doesn't stop me from laughing.  Life is hard enough for everyone, but especially hard for those of us who know that we'll be leaving this life behind sooner than most.  Having mixed feelings about dying, allows me to laugh even more, enjoy life, and appreciate every day, hour, second that I can.  I almost feel sorry for those healthy individuals who can't do so.  I'm glad that they are not chronically ill, but there is a certain type of freedom that one gets once diagnosed with a life-threatening disease.  You no longer care if your newspaper is late, or doesn't arrive at all; you don't care as much when your food order is wrong or cold; you find that all of those things that used to drive you crazy no longer are in the driver's seat.  You, once again, have control over your life, as you know where your end of the road is, no matter the journey. 

The world has gone crazy, and you can't change that.  What you can change, however, is how you view that crazy world!  Do you let the crazy run your life, or do you put a little crazy back into it?  I have chosen to put a little of crazy back into it, even though others think I'm crazy for doing so.  

Tonight, I think I'll listen to Patsy Cline's infamous song "Crazy" and know that sometimes crazy can be a good thing!      

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End of Life Discussions

October 15, 2017

It's hard enough to get family and friends to talk about your chronic and/or terminal illness, let alone sit them down for an "end-of-life" discussion.  Family just want to make sure that all of your paperwork i.e. will, power of attorney, bank accounts, bills to be paid, funeral arrangements, life insurance, etc. are all in order.  But when it comes to talking about your "actual" death, and how you see your last days, hours, minutes, even seconds playing out, you might as well be talking to the wind, as the whispering winds of the word dying, have sent family members scattering.

For physicians, they have had plenty of practice in this area, at least if they are a caring, compassionate physician.  Once you, the patient, get your head wrapped around the fact that you have a chronic/terminal illness, and the physician has handed you your life expectancy on a plate, it then becomes your turn to share that plate with family and friends.  Again, not an easy task.  There's something about death, the finality I suppose, that scares the hearing and voices right out of those who love you.  You may find yourself having to say "I'm dying" in several different ways, almost like a game of charades, using hand gestures, body language in order for them to get it.  You can't really blame them though.  Personally, I think that it's easier for the person dying, than it is for those who have to hear about it.

Denial is a huge issues when it comes to having end-of-life discussions.  They always seem to begin, that is if they even begin, surrounded by questions and comments like, "aren't there any medications they can give you?  They're coming up with new and improved treatments everyday!"  My favorite one is, "But, you're not really dying, right?"  Denial is a very powerful emotion, and it's not just a river in Egypt my patient friends.

Conversation can make all the difference.  When it comes to end-of-life care, one conversation can make all the difference.  To help patients and their families begin an end-of-life discussion, The Conversation Project was formed in order to emphasize having a conversation on values - what matters to you, not what's the matter with you (Ellen Goodman, Co-Founder & Director).  This Project can help you and your loved ones get started on one of the most important family discussions you will have in your lifetime.

No one knows your family better than you do, so make sure that you are prepared for each individual family member's reaction, know where to have the discussion, and of course as with all things in life, timing is everything.  I highly suggest that you don't wait until the last week of your life.  The sooner this discussion occurs, once diagnosis has been made, the better.  

For some families, it may work better by having an interventional-style gathering.  For others, it may be better having one-on-one conversations.  I began my end-of-life discussion with subtle hints, then not-so-subtle conversation, which has always been met with resistance (denial).  For me, since I'm a writer, I'm going the route of writing to each individual, so they can't walk away from it, or pretend they didn't hear it, but actually have it word-for-word, in writing, to refer back to when they are ready for acceptance.  Presently, I have some time to play with, as I may still be a candidate down the road for a double-lung, heart transplant.  I don't worry about dying, and I'm not afraid of dying...worrying and being afraid is what family does.  

Like I said at the beginning of this blog, it's easier being the one dying than it is for those left behind, so be kind...be gentle.   

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Know Your BMI

October 14, 2017

I remember the first time I saw the capital letters B-M-I, and was left to wonder what they stood for.  I didn't want to ask my doctor because he already thought very little of me, as I was only the patient.  I admit that initially I thought it had something to do with having a "B"owel "M"ovement...just couldn't figure out what the "I" stood for.  

As the years passed however, and internet access allowed for patients to research specific medical terminology and medical conditions, I found it!  BMI stood for Body Mass Index.  The word Index still left me a bit confused, so I researched Body Mass Index further.  Your BMI is a simple measure used to know if you have a healthy body weight.  One of the benefits is that your BMI can let your doctor know if you are at risk for health problems like heart disease or stroke.

How is your BMI measured?  Your BMI is measured by your weight and height, showing whether you are:

  1.  Underweight
  2. Healthy Weight
  3. Overweight
  4. Obese

If your doctor is not checking your BMI, or you're not sure if he or she is, ask to have it checked.  Obviously, as a patient, you want your BMI to be in the Healthy Weight category, and if it's not, then you will want to discuss with your doctor what you can be doing on a daily basis to obtain the optimum weight for your height.  Discussing exercise and a diet tailored just for you will help you reach your goal of a healthy BMI.

Although I was talking in jest regarding bowel movements when initially attempting to figure out what BMI meant, it does factor into the area of healthy bowel movements, as exercise and diet play a major role in this area.  Major issues in those body parts involving bowel movements i.e. colon, rectum, canal, gastrointestinal tract, sphincters (circular muscles), can not only become serious issues, but can kill you.

Know your BMI and live longer today!  Your loved ones are counting on it...

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No M.D. Behind Name?  No Book...

October 13, 2017

When it comes to getting a book published by a reputable Publisher, regarding first-hand experience of having a chronic or terminal disease, patients are once again, placed on the back burner, that is unless their last name is followed by M.D., or some other high-level title. There are some wonderful books available written by doctors who became patients themselves.  Some survived, some did not.  My favorite book of all is When Breath Becomes Air ,written by Paul Kalanithi, M.D.  Sadly, he falls under the category of those who did not survive.  Although I find it interesting to see the many positive changes that doctors go through when going from doctor to patient, there is also a frustration on my part in not being able to get my own book published due to not having M.D. or some fancy title behind my name.

The same holds true for those books published by celebrities, pro-athletes, politicians, etc.  There is an  abundant number of books available written by these individuals, but unless you are considered "somebody," in the eyes of publishers, you are nobody.  This same phenomenon occurs even when writing magazine articles, and op-eds.  I learned the hard way, reaching out to publisher-after-publisher and receiving rejection-after-rejection that I fall under the "nobody" category.  If I wanted my book, about my own health journey in being diagnosed properly, and patient advocacy, out there for the world to see, then I would have to self-publish, which is not cheap by the way, but something I eventually did.  Was my book perfectly written?  No.  Was it without grammatical errors and/or typos?  No.  But neither are those books by M.D., celebrities, pro-athletes, politicians.  Actually, through the backdoor-grapevine of the book world, I found out that most of these individuals mentioned have never even contributed a word to their book.  It's a book written by another, using the name of someone worthy listed as the author in order to sell the book. AAAGGGGHHHH!!!!

It's bad enough that I am a patient living with chronic diseases, but to have something of importance to share with other patients, caregivers, doctors, and more, to no avail because I'm "only" a patient, is both exasperating and infuriating!  Talk about feeling less-than.  It devalues everything about me, everything I've gone through, and everything I have to say from my own personal experience as a normal, everyday person living with a chronic illness.

I have asked numerous publishers, who have been kind enough to at least respond to me regarding my book, even though it's a rejection, why my book was rejected, and what could I do better in order to get my book published.  Their answers were blunt, but nonetheless honest.  You have to be somebody...credentials such as M.D. PhD, celebrity, a person well-known to the world, go a long way in the world of publishing, even though we patients have valuable, first-hand experiences and information to share.  Many doctors use their patient's experience to help promote their own books, so why aren't we?  Because we don't have the right credentials...frustrating!  

Once the re-write of my book Can You Hear Me Now: or do I need to yell into your stethoscope? is completed, I'm tempted to add to my last name PMAH, short for Patient Mad As Hell.  Who knows, I just might get a publisher's interest, even if it is just to ask me what PMAH stands for.  Could be the foot-in-the-door I need in order to be heard in the world of publishing.  Hmmm....

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Are Health Magazines Really Healthy?

October 12, 2017

Being a good grandma, or in my case Mama, I have ordered over the years, magazines from my grandchildren to fund their extracurricular activities by purchasing magazines I don't need.  However, this time around, I purchased a health magazine, thinking this would be right up my alley due to my heart/lung issues...wrong!

Every month's cover of my Health magazine is always graced with that of a celebrity, a model, or a 16-year old girl, all trying to convince me that I too can look like them if I just work out harder, eat grass, or drink green drinks.  I say bull shit!  Only through being young already, plastic surgery, or photoshopping, will I, or you, ever look like these women.  Men have the same issues with their own health magazines, making them feel just as guilty as we do about our own appearances.

This all begs the question, is health more about outside appearances or what's actually happening on the inside?  As a heart/lung patient, my vote goes straight to the heart (pun intended) of the issue...to the inside of an individual.  For me, and according to Webster's Dictionary, the word health is defined as "the state of being free from illness or injury," not based off of those catchy magazine article titles such as:  Easy Tweaks That'll Transform Your Body-Fast!; Perfect Skin: Glowing, Clear, Ageless; Burn 500 Calories a Day; 2-Min. Fat Blasters ( 2 minutes? Really?); and more.  Instant gratification is exactly what has caused so many of the health issues that both women and men face today. 

These magazines are filled with so much fluff, not to mention pages and pages of pharmaceutical & product  advertisement, which obviously keep the magazines afloat, that there is literally no room to even discuss the seriousness of those health issues most face, which would obliterate those images of looking like a celebrity or model.  Reading these supposed health magazines is like watching reality TV, where there is basically no reality, let alone common sense.  It's staged, and meant for the weak of mind, leaving the physically weak to deal silently with their own physical illnesses.

There are many magazines who do address serous health issues of women, Woman's Day; Redbook; Good Housekeeping; Allure; and a few others.  These magazines actually have substance when it comes to "health!"  For men, I honestly do not know of many men's magazines that truly address those serious health issues that men face.  But then again, most men aren't looking for those magazines to begin with.  If it's not Sports Illustrated; Popular Mechanics; Field and Stream; or GQ, then no sense even looking.  There is actually a Men'sHealth magazine available, but this magazine's articles aren't much better than what's offered to women: Fast Food, Hard Muscle; Dress For More Sex; 9 Get Rich Secrets; Six-Pack Abs.

If you are a woman, or a man, who is seeking the latest news, and articles, dealing with real health issues, today's magazines found on magazine racks in stores are probably not your best bet.  Talking to your physician, locating credible websites which address the true meaning of Health are your best option,.  Even your doctor's office provides magazines that deal with your particular health issue.

Do you want to look like a celebrity, or do you want to live?  Disturbingly, so many people would answer this question with a resounding "look like a celebrity."  Hell, most celebrities don't even look like themselves in real life.  To choose outward appearances, before the quality of one's inside health, is truly a sad statement on our society today.  Don't let the magazine covers, and article titles, fool you...it's all about money, their money, not yours, with the exception of you paying anywhere from $4.99 to $9.99 for a magazine full of fluff, and no substance, with the magazine publisher laughing all the way to the bank.

Spend your hard-earned money on your overall health, for a richer, fuller life, and not on how to look like the latest celebrity.  Looks are fleeting, but good overall health is for a lifetime!

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Medical Billing

October 12, 2017

You've just received the medical bill from your recent hospital stay, and once you've picked yourself back up off the floor, you say to no one in particular, "what the hell?"

There's a final amount, but no itemized billing to help you understand how the hospital came up with this astronomical amount for your hospital stay.  What to do next?  You contact the hospital and ask for a itemized bill to help you understand how they came to the total amount that they did.  It's called medical billing transparency, something you won't find unless you request it, fight for it, and often more than once.  

Double billing is often an issue when the patient has more than one medical insurance provider, which can lead to both, or more, insurances being billed, and paying for the same bill.  Trust me when I say that if the hospital is paid by more than one insurance company for one bill, they are less than likely to let you know, or to return the overpayment to either the insurance companies or to you...It's all-out war!  I've lived it!  

Medical bill advocates are available to patients.  They are professionals that understand the complexities of patient medical billing.  These advocates can audit, seek out errors on the part of the hospital, and negotiate for a lower cost to the patient.  I once was charged $15 for one, yes, one, Q-tip while hospitalized.  Do you know how many boxes of 500 Q-tips I could have purchased with that $15 for just one?  I'm not sure if I, or my insurance, will ever recover all unwarranted medical care losses.

Fighting to get an itemized billing statement, as well as fighting the itemized bill itself, should you be fortunate enough to have one provided to you, often becomes a full-time job, thus the medical bill advocate who normally works at no upfront costs, but only a percentage of what you save in the long run.  It will be worth the percentage of your savings on your medical bill in hiring an advocate, in order to bring the hospital bill down to a reasonable, and true, medical billing statement and total amount.

Five Times You Definitely Need a Medical Bill Advocate (Elizabeth Renter/Nerd Wallet's Health Hub):

  1. Your  insurance denied a claim for something you thought would be covered.  Medical Coding is an ongoing issue within the medical field as the coding doesn't always match that of the insurance's coverage, thus denial of your claim.
  2. You're bills seem outrageous!  Without an itemized bill, and even an audit, it could mean that there is a billing error(s), duplicate charges, and even in some cases, fraudulent charges.
  3. You've already tried arguing and even negotiating your bill and haven't had any luck.  This is where a medical billing advocate can get results when you've hit a brick wall.  They know the right people to talk to and to ask the right questions in regard to your bill.
  4. You're worried how your medical bill will affect your credit.  Years ago FICO did not allow medical debt to affect your credit, however, today it may have a smaller impact, but nonetheless may still affect your credit score.  I'm one of those patients who says, bring it on.  If I'm dying, do you really think that my credit score, that someone with nothing better to do then to make up a score that supposedly defines who I am, is going to scare me or make me worry more than my medical issues already do?  Not going to happen!  
  5. You're considering declaring bankruptcy due to your medical bills.  You are one out of 56 million other Americans who are struggling to pay their medical bills, including those which are filled with false charges.  Medical bills are the leading cause of personal bankruptcy in the U.S.  If you are one of the lucky ones who are able to negotiate a lower medical bill, making them more manageable, then count yourself blessed, as most cannot.  

A medical bill advocate is on your side and in your corner.  Don't hesitate to utilize this resource when overwhelming medical bills appear at your doorstep on a daily basis, like the grim reaper on a bad Halloween night.

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Ignoring Childhood Symptoms

October 11, 2017

After being diagnosed with heart and lung disease in my 50's, I began going back through my childhood looking for a rolodex of any symptoms that might have been a sign of things to come.  I found plenty!

From age 2-3, possibly even before but too young to tell anyone, I began having migraine headaches.  They were kick-the-wall, hide-the-knives types of migraines.  I remember my parents having to cover the windows in my bedroom with several blankets each in order to shut out the light.  I would cry and kick until there were no more tears, or any strength left with which to kick with.  Sleep during these headaches became my closest friend.  Back then, there was not the quality of technology that there is today, but doctors used every piece of equipment they had available to seek that brain tumor they knew was lurking in my brain somewhere.  But there wasn't a brain tumor, nor any medically known reason as to why I was having these horrible migraine headaches, and having them at least once a week.  I was in the hospital from birth to age 18 approximately 20 times, with no diagnosis.  So, the doctors told my parents it must be stress.  I laugh when I think about that now, as what does a 3-year old have to be stressed about.  Gee, should I have Frosted Flakes, or Cocoa Puffs this morning?

My migraines stopped suddenly at age 29 for unknown reasons, at least then, and I have not had a migraine since, knock on wood.  During an echocardiogram at the Cleveland Clinic in my 50's, the echo tech asked me if I had migraine headaches, and I told her we don't say those "two words," at least not out loud any longer.  She called a doctor in, and the next thing I knew they were conducting what was called the "bubble test" where saline is shot into a vein in the arm through an IV to identify any blood flow issues inside my heart.  If bubbles passed from one side of my atria to the other, than I was going immediately into open heart surgery due to having a Patent Foramen Ovale (PFO).  The bubbles did not pass over, thank God, but the doctor said that I had what was called a "mobile" atrial septal aneurysm caused at birth due to a hole in my heart, which had at some point closed up on it's own, creating a pendulum-like action between my atrias.  I just laid there, looking up at him, saying "uh huh," as I had no idea what he had just said, but at least I knew why I had endured those horrific migraines for so many years of my life.

I often would have a sharp pain in my chest while growing up, which never stopped, better known as angina, that would drop me to my knees in a moment's notice.  I would always, during my adolescence and young adulthood, jump immediately back up thinking what the heck was that all about.  Well, it was all about my heart, but was blown off by doctor's as stress.  Yes, I had more stress now in my 20's & 30's than I did at age 3, however, I still wasn't buying it, but no heart tests for me.  I was a woman.

During my adolescence, I had another symptom that should have been a warning that something serious was happening, but was also ignored.  When the neighborhood kids would get together to play hide-and-seek, I couldn't wait to be the one to hide.  I only got to play my favorite game for one week however, due to passing out in the exact spot where I chose to hide.  I would run like the wind, stopping suddenly to hide behind a tree or bush, and then I would pass out.  When the other kids couldn't find me, they would go and get my mother, who would find me, passed out but breathing, underneath a bush or behind a tree.  After a week of freaking everyone out, I was taken to the doctor...again.  Guess what the diagnosis was?  Yep, stress.  Even though I was quite young, this stress thing was really getting on my nerves!

Finally in my 40's and 50's, and through years of fighting for answers, I was properly diagnosed.  it wasn't until I looked back at my childhood did I realize that I had carried my heart and lung issues with me throughout my whole life.  My migraines were due to the hole in my heart, a congenital defect; the quick, yet painful, pain that occurred in the middle of my chest often, was angina, more than likely caused by the other two congenital heart defects formed at birth; and, my passing out after running quickly then stopping suddenly was an indicator that there was a breathing issue (lungs).

If your child, grandchild, or someone else you know has a child, or knows of a child, who has any of these symptoms, but cannot find a diagnosis to fit with the signs and symptoms, check the heart.  Doctors today, especially pediatricians are much more in touch with those symptoms from birth on that are conducive to those of heart defects/disease, and children are being treated much faster, and with great results.  I get chills just thinking of how many babies died at birth, or soon after, with their parents never knowing that congenital birth defects was the cause.  

No matter what the signs and/or symptoms a child is having, if it is unusual, with no known factors, especially leaving out the stress factor, and no diagnosis can be found, don't hesitate to take a look at other medical reasons that could possibly be the culprit.  Children cannot speak for themselves, so we must be their voice.  My parents did not have the advantage of knowing they could ask questions of the doctors, nor did they have the internet or patient advocacy to turn to.  They did the best with what they had.   

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You Don't Look Sick?

October 10, 2017

There are always two sides to every story, and that includes health issues.  Not everyone who is sick looks sick.  In fact, they may even look better than a person who is completely without health issues.  Don't judge that book by it's cover!

Patients, even chronically ill patients, often are judge by how they look to the outside world, but the truth is that the patient doesn't want others to see them on their bad days.  Who wants to go out looking like they're on death's door, or have nothing good to say other than "I don't feel well.?  I don't.  But I have paid dearly for not doing so.  Choosing to not go out on bad days, letting others see what the reality of my chronically ill self looks like, might make me an accessory to what they think.  Am I a partner-in-crime, helping those critics who question whether or not I'm truly ill?

After much self-reflection, I always come back to the same conclusion, that the time has come for me to hit the streets on one of my bad days.  However, nor, should I have to apologize to anyone for taking the time, whether its a bad day, or a good day, to fix my hair, put on make-up and finish off my look with a great looking, upbeat outfit.  Often after  taking the time necessary to put together a look that's worthy of stepping outside my front door, I'm too tired to do so.  Some days, I press forward, others, I just remove my clothes, makeup, put my PJs on and climb back into bed or huddle in the favorite corner of my couch with my laptop or a good book.  On really bad days, I sleep, which is not an easy task for me, as I go through all of the feelings of guilt for doing so, when I have so much else to do.

When people find out for the first-time that I have chronic heart and lung disease, their first response is never "oh, I'm so sorry to hear that."  It's always, "Really?  But you don't look sick!"  AAAGGGGGHHHHH!!!!!  Yes, in a way this is a compliment, but when they look you up and down, with that questioning eye-brow-raising look, you know they're questioning if what you are saying is the truth.  I mean, who would lie about something like this?  Well, thanks to the media showing others faking a disease to get funding for their drug, alcohol or gambling addiction, sadly I have become fair game.  There was a time when looking good was beneficial in many aspects of my life, both professionally and personally.  However, where I am at now in my life, not so much.

It's taken me years to wrap my own head around my health status, after all, I don't look sick.  I am finding that both my family and friends are struggling in this area as well, and may never get their heads wrapped around it.  Not because they don't care about me, or don't love me, but because I don't look sick.  In all fairness to them, I don't.  My heart and lung issues are invisible to the naked eye, which in turn results in me feeling invisible at times.  

Expectations on the part of others are very high for someone like me, who looks healthy on the outside, but is one hot mess on the inside.  They expect me to keep up the pace, which I can no longer do.  Where there is lack of understanding, there is also loneliness, especially if that person with the chronic disease asks for help and doesn't get it - OUCH!!!  I don't want any pity, I only want to be understood.  We live in a very busy world these days where activities, children, grandchildren, social media, and work have taken precedence over being family or friends first.  

Denial on the part of family members and close friends often mean less time spent together...out of sight, out of mind.  I have always, until my diagnoses, been very active.  I was the one who took care of others.  I was the leader of the pack if you will.  Now, I'm not only not the leader of the pack, I'm having difficulty just bringing up the rear!

Without anyone to talk to, really talk to, about what I actually go through, other than my cardiologist and primary physician, I fill the cracks of my foundation with my writing.  It's cathartic.  I do this both on bad and good days, which helps me sort through the many mixed emotions running rampant in my mind like tiny soldiers at war.

So, if I really want to be honest with myself, the question becomes this...are the hurt and loneliness I experience caused by other's busy schedules and possible denial, or are they caused by the fact I don't look sick and my own inability to let everyone see the real me, for better or for worse?  The chronic, exhausted, incurable me.

I recently received an email with short stories that should make us all think twice about what's really important in life.  I would like to share one of those...

Today, as we all stood

around my mother's hospital bed,

she uttered her last coherent words

before she died.

She simply said, "I feel so loved right now.

We should have gotten together

like this more often. 

I don't want to be this person...

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My Dad Died Needlessly 8 Years Ago Today... Gone But Never Forgotten

October 9, 2017

This will be the hardest blog I will probably ever have to write.  My father, my Best Friend, whose photo is at the left, died a quick, yet painful, death that no one should have to endure.  

It all began so simply with his primary physician ordering a colonoscopy based off of a slight amount of blood in one of three fecal samples.  My father had no other symptoms, and was still golfing one-to-three times a week at the age of 84.  He wasn't sitting in an armchair waiting to die, but instead was very active.  We discussed his doctor's request, going back and forth as to whether or not he truly needed a colonoscopy at his age.  Although I am a patient advocate, I told my dad, as I would any other patient, that the final decision would have to be his.  Because two out of his three siblings had died of cancer, we went to see the gastroenterologist, who assured us that this was a simple procedure, and that there was nothing to worry about.  In hindsight, I wish I would have asked more questions, which only drives me to seek more answers today.

I had had two colonoscopies prior to my dad considering one, and had not suffered any ill effects, but nonetheless was worried about dad's age, even though he was in great health.  Eventually the day came for me to drive my father to his colonoscopy,  unknowingly also driving him to his death.  When my dad became nervous he would always whistle through his teeth, which he was doing on the drive to the surgery center.  I told him he didn't have to do this.  We could turn around and go back home, but he feared cancer more than he feared the colonoscopy, so we arrived and checked him in, with him signing a consent form for both the colonoscopy and endoscopy, nothing more.  About 15 minutes later they took dad back to prep him while I remained in the waiting area.  They called me back to see dad right before they wheeled him into the surgery room, and I was glad to see that he didn't seem to be as nervous, or he was putting up a good front for me...knowing my dad, probably the latter.

Only an hour or so had passed when they told me he was in recovery and I could go back to see him.  I knew immediately that something was wrong.  My dad's color was off, he was wincing in pain, and had not yet passed any gas as what was the norm for all patients after a colonoscopy.  I shared my concerns with both the nurse and the doctor, but they didn't seem to be concerned at all, and said they were releasing him.  I replied, "He can barely sit up to get dressed!"  They said they needed the bed.  Once again, I wish my patient advocacy had reared it's ugly head the way it does now, and requested an ambulance to take dad to the hospital.  Instead they loaded him into my SUV, which was very hard for him due to the high step to get in.  All the way home he winced in pain, held his stomach, never passed gas, but would not go to the hospital.  I got him home, into his favorite chair in the den, fixed up a small folding table next to it, and fixed him some fish sticks.  He ate them slowly, drank some water finally.  Within two hours I was calling for an ambulance as I had never seen my dad in such excruciating pain.

The paramedics arrived but argued with me that dad's symptoms were typical for someone his age, and were not wanting to take him to the hospital.  All that pent-up patient advocacy came flowing out of me like a river over a dam, which a few choice words and threats thrown in for good measure.  I followed the ambulance to the hospital while calling my siblings, all but one out of town to tell them what had occurred, and it was not looking good...I just had that gut-wrenching feeling this would not end well. 

It only took an x-ray and an ER doctor to tell me he needed emergency surgery due to sepsis, which had set in quickly, and that he would be surprised if he made it through the surgery.  When I told my dad he was having surgery, he uttered the last words he ever said, "Oh, God!"  I think he knew.  I immediately called my sister-in-law, who was an RN in the very same hospital that day, to please come down, dad was in the ER, and they were asking me which surgeon I wanted, even though they didn't think that Dad would pull through.  She came immediately, told the ER doctor which surgeon, and then we waited.  They let me go back for a quick visit and see dad off to surgery.  It took every ounce of strength I had not to cry in front of him, instead telling him it would be alright, I would see him when he came out of surgery, and that I loved him...it was to be the very last time I ever got to tell my dad I loved him.

Miraculously, dad made it through the surgery, but was taken upstairs to ICU with a ventilator and so many machines plugged into his body, I could barely make him out on the hospital bed.  His face was swollen, and he was not coherent.  As I sat with him, the only words that I could say to him were I love You but knew they were lost on him.  I'd like to think he still heard me say it over and over again, as I held his hand, rubbed his arm, and gently rubbed my hand over his hair.  The ICU was wonderful, and promised they would not give up until it got to the point of the "do not resuscitate order" would allow.  At one point I, and the family, thought the ICU had worked a miracle when his vitals began coming back to normal, even though his kidneys had pretty much shut down.  We high-fived, took bathroom breaks, when my youngest brother came after us telling us that dad was crashing.  Dad died exactly one month shy of turning 85.  

Dad was not alone when he died.  All of us kids were with him, and I hope that he realized just how much he was loved, and just how much he would be missed.  At the moment he passed, I had not slept for almost 42 hours and completely broke down.  As Executrix I said no autopsy, however the coroner, who knew my dad, said no way should he have died due to a colonoscopy, overriding my decision, then ordering an autopsy.

The doctor who had performed the colonoscopy stood right in front of me in the ICU waiting area telling me he had no idea what had happened.  It was a lie, and one in which he and the surgery center, which he just happened to be a partner in, attempted to cover up.  This doctor had used a  procedure, electrocauterization, not included in the consent form, on my father to cauterize a miniscule amount of blood, resulting in the burning of 6 holes into my father's colon and stomach during process.  The only training this doctor had received on this piece of equipment was on pieces of meat in his office, along with the sales representative, never on a human.  Dad was the first.  We sued, tying this doctor up, costing him a lot of money, but most of all, making sure he didn't kill anyone else for the 2 1/2 years it took to get into a courtroom.  Even though the evidence against the doctor was overwhelming, enough of the jury felt that due to dad's age, he had had a good life, and the doctor still had his life ahead of him.  I lost dad all over again that day.  Two days later I filed a complaint with the Ohio Medical Board against this doctor with a 10-page report.  They investigated him for 1 1/2 years, again tying him up so that no other patient would have to needlessly die.  One consolation throughout the whole legal process was that this doctor didn't make any more mistakes, or kill anyone for at least 4 years.

I am driven as the white snow, by my dad's death and the pain he suffered, and have every intention of opening up a Patient Advocacy & Education Center For All in the greater Cincinnati, OH area, and it will be in honor of my dad...John W. Tillery, even though to me he will always be My Dad...My Best Friend.

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Becoming Your Own Best Advocate

October 8, 2017

From the first day that we are born, we all become patients.  The question then becomes how many patients out of the many millions around the world know how to advocate for themselves?  Very few.  

I was raised to never ever question what the doctor in the crisp white coat said.  After all, he had gone through all of those years in medical school, and what could we, the patient, possibly know that he wouldn't.  In time, I found out that patients have more knowledge about their own bodies then previously thought.  The physician spends 4 years in an undergraduate program, then another 4 years in medical school, with anywhere from 3-7 years being spent in residency training.  If we go with the additional 7 years in residency training, we come up with a doctor spending a total of 15 years before becoming eligible for his or her medical license.  Impressive stamina to say the least.  The age you are, are also those years you've spent in your body.  More than likely your years in your body are going to far outweigh that of the doctor.

But the patient/physician relationship should not be a contest, but a team effort.  With the doctors overall medical knowledge, and a patient who is in-tune with their body, the end result can only be a win-win situation!  You can't throw a quarterback out onto a football field alone and expect him to win the game.  He needs someone to call in the plays, protect him, and to throw the ball to.  Thus, the patient/physician relationship.  One person alone, in either scenario, cannot win, and your health is much more important than any football game.  I'm sure there's a few guys out there who might disagree with me - ha!

Showing up at an annual physical, with no complaints or symptoms to speak of, will more than likely make your visit a simple one.  However, if you are having unusual symptoms, or the doctor examining you finds a problem requiring further testing, then you are, without any choice of your own, thrown into a world that you don't understand.  Big words are being thrown around the exam room like a swarm of bees.  In all probability, should that happen, you more than likely will not have the wherewithal to speak, let alone ask any questions.  Learning for the first time that you may have a serious, chronic or possibly terminal disease can be devastating.  I know.  

Instead of asking questions when I first heard the words mitral and tricuspid valve regurgitation, which I later learned was leakage, I just said okay, paid my co-pay, made my next appointment, then drove home crying the whole way.  It wasn't until my next experience at a hospital, soon after that visit, with a doctor who was both complacent, and non-existent in my mind, that I learned to fight back.  It was only after that disappointing hospital visit, that I learned to begin researching both my symptoms and what the terms mitral, tricuspid and regurgitation meant.  The doctor had told me that low blood pressure had nothing to do with heart issues.  Well, my research told me quite the opposite...it had everything to do with what I was experiencing.  My low blood pressure, also known as Hypotension, not hypertension, which is high blood press, had everything to do with my heart symptoms.  Without going through the past 14 years of my medical experience, let's just say that I've learned to become my own best advocate, with my cardiologist coming in a close second.

What are the steps you, the patient, can take in order to become your own best advocate?

  1. Ask questions.  As they say, there is no stupid question other than the one that is never asked.  If the doctor rolls their eyes, without providing, or at least attempting to provide, an answer, you are with the wrong doctor.  Demand answers!
  2. If you do not understand any of the terminology coming out of the doctor's mouth, don't be afraid to have them explain each and every word you do not understand.  This does not make you stupid, it only means that you did not go to medical school.
  3. If possible, have someone with you at the visit who can be that extra pair of ears to hear what the doctor is saying, and even better write down.  Writing notes during a visit can be accomplished either by you or that someone else who is with you.  My cardiologist has a medical transcriptionist who documents every word being said by both myself and my cardiologist, and I leave my visit with a large portion of that transcript, and any future tests/procedure dates and times.
  4. You may ask the doctor if you can tape record the visit, as you are afraid that you will miss an important part of what they are telling you regarding your health.  Some doctors are okay with this, others aren't.
  5. Once back home, take those diagnoses, words, verbiage discussed during your visit and plug into the internet, preferably a credible medical site.  I prefer the Mayo Clinic Website, as it deals with all illnesses, and has the most up-to-date information regarding those illnesses.  **Warning: Do not read too much into what you are reading, or you will have yourself in a casket before the end of the day!  Always share this information with your doctor, along with prepared questions.  If doctor has no desire to read your information, and/or answer your questions, then its time to move on.  If the doctor discusses why the information you brought in does not pertain to you, listen carefully, documenting as to why not.  If it makes sense to you, let it go, but if it doesn't, then do more research or get a second opinion.
  6. A good doctor will never be offended by a patient who wants to get a second, or maybe even a third opinion.  Some will even encourage it, definitely a sign of a good doctor!
  7. Never submit to an invasive test or procedure before doing research, and/or getting a second opinion.  A non-invasive test is one thing, but an invasive test can do more harm, and even result in death.
  8. If a doctor is ever inappropriate in any way, verbally or physically, leave immediately and report them to your state's Medical Board.
  9. This is your life we are talking about.  If you have no problem questioning the paperboy as to why you didn't get your paper, or question a waiter at a restaurant about your order being wrong, then you should never fear questioning a doctor about your health.  It's your life...don't make it your death.

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Breast Cancer Awareness Month

October 6, 2017

In 1985, the month of October was designated as Breast Cancer Awareness Month which occurred through a partnership with the American Cancer Society and the pharmaceutical division of Imperial Chemical Industries in order to promote mammography in the fight against breast cancer.

The pink ribbon was created as the symbol for breast cancer awareness in 1993, and soon became recognized as the world-wide symbol for breast cancer.  Since then, the color pink has never been so highly publicized as it is today.  About 1 in 8 women born today in our country will be diagnosed with breast cancer at some point in their lives. 

Most women can survive breast cancer if it's found and treated in it's early stages.  Here are a few recommendations  in detecting breast cancer early:

  1. Ask doctors and other medical professionals to speak to women about the importance of getting screened for breast cancer, as well as conducting self-exams while in the shower.  Many lumps in the breast are found by the patient themselves.
  2. Encourage women of all ages to talk with their doctors about when they should begin getting mammograms.  Family History may be determining factor as to how early a woman begins getting mammograms.
  3. Get the word out by organizing presentations and/or lectures to speak with women about the importance of self-exams, mammograms, and yearly check-ups. 

I found a lump in 1983 in my right breast as I reached my right arm over my chest to pick up an object, and there it was.  Out of fear, I waited for two weeks to see a doctor.  Not something I recommend doing.  I saw a surgeon who attempted to drain the lump in the hope that it was just a cyst...it wasn't.  I had surgery the next week, and found myself to be one of the lucky ones...it was not cancer.  

My second lump was detected, again in my right breast,  during a gynecology checkup.  I was seen by a group of female surgeons, once again going under the knife.  By the grace of God I, once again, was declared cancer free, however they did remove the lower portion of my right breast due to a large cystic fibroid mass, just to be on the safe side.  I might only have one and a half breasts, but I don't have cancer!  

During many of the beginning years of breast cancer awareness, one component was missing, as it took years for men to come forward, with some losing their lives due to breast cancer.  Male breast cancer is by all standards, albeit rare, a usually overlooked issue, but one that must also be considered as a man's health issue and not just a woman's.

Many women who received chemo for breast cancer, now have heart issues due to the chemo, and some have sadly been placed on the waiting list for a heart transplant.  In a perfect world, the Susan G. Komen Foundation would come together with with the American Heart Association, and form an alliance in order to fight both of these chronic,  intertwined, and often terminal, diseases as one.

As a heart patient, I can only hope and pray that I live long enough to see the day heart disease will receive the same, if not more, awareness and recognition that breast cancer has and does, as heart disease remains the No.1 killer of both men and women over all cancers combined... in a perfect world.   

My Blog

Strong people stand up for themselves,

but stronger people

stand up for others...


Pushing Pills

October 5, 2017

Everyday we see, read and hear about a pill that will make us happy and will take all our cares, even health cares, away.  Commercials and advertisements include people who appear depressed, but then when they take the pharmaceutical company's "miracle" pill they all of a sudden are happy again, without a care in the world.  In their quest to be happy again, patients/consumers see this type of advertising and they completely block out the part where all of the many risks are noted, either at the end of a commercial with a fast-paced talking guy, or at the end of an advertisement in such small print that even with reading glasses on most cannot read.  We now have advertising of pills that will help patients with the side effects due to the first pill the same company advertised.  And this is exactly why pharmaceutical companies are a billion dollar industry, sadly at the cost of patients.  They see it as "profit before patient."  Patient advocacy is setting out to change that!

My first experience with a cardiologist, who I will refer to as cardiologist No.1, was through an ER visit.  It soon became apparent that this cardiologist was judging me, not treating me.  I demanded to be admitted as the pressure in my chest was unbearable, and my difficulty in breathing on a scale from 1 to 10 was a 10.  Tests were run, and within 2 days I was being released with no answers, and by a nurse not the cardiologist, who I had not seen since my time spent in the ER with him.  But they made sure i didn't leave without a consolation prize.  The nurse did have prescriptions for depression and anxiety for me, which I turned down.  I fired the cardiologist, and then reported him to the cardiology group he worked for, who in turn fired him as well.  

Cardiologist No.2 demanded, without any heart testing being done, that I go on Beta Blockers, even though my blood pressure was already too low (80s/50s).  Beta Blockers  would only have lowered my blood pressure, and do so at a very dangerous level.  We argued.  I fired him.

I decided that maybe if I saw a female cardiologist that I might get a different result, someone with more compassion for another female.  I was wrong.  Cardiologist No.3, again with no heart testing being performed, suggested at the end of our visit, that I go on Paxil.  I didn't even know what Paxil was, so I asked.  It was an antidepressant which I highly suspected this cardiologist was on.  I was not depressed, I was experiencing heart issues.  We argued, but I didn't fire her, at least not yet, due to her agreeing to let me wear a 30-day heart monitor, which was my suggestion, not hers.  As I was leaving she commented that the monitor would not show anything and that I would be back for the Paxil.  I didn't have to wait 30 days.  Within less than two weeks, the heart monitor picked up numerous serious heart irregularities, which sent me to the ER twice, once with my heart rate at 296 beats per minute (60 is the norm).  The alarmed ER doctor suggested I see an electrophysiologist who dealt with my type of issue... the electrical component of my heart.  I took the monitor back to cardiologist No.3's office with it's findings.  She had said the monitor would not show anything... guess I showed her.  Oh yeah, then I fired her.

I eventually saw cardiologist/electrophysiologist No.4 who soon after performed cardiac ablation after finding that I had been born with the upper chamber of my heart damaged.  Afterwards, for eight months I felt as good as new, but then...

All of my symptoms came back, with the exception of the heart rate issue.  The electrophysiologist surprisingly suggested pills, but couldn't give me a diagnosis for why I would be taking those pills.  After much discussion, and my pushing back, stopping him from pushing pills, led to a Medtronic Reveal Heart Monitor being implanted into my chest.  I was to document date/time, my symptoms, and what I was doing at the time so it could be compared to the readings from the monitor.  I painstakingly kept a daily log, and went religiously back to office for readings from my monitor as told.  For one year there was not one reading from the monitor that anyone could read.  The ECG was like chicken scratch, medically known as artifact or static.  The monitor wasn't working, and after one year I called Medtronic to get one of their tech employees to come to my next visit.  He found, at the visit, the monitor had never been programmed by the electrophysiologist from the beginning.  Thankfully the tech was able to go back and program it, forcing me to keep the implanted monitor in my body one year longer than recommended.  The electrophysiologist was standing in the hall as I left, and when he slowly turned to look at me, I looked him straight in the eyes and calmly said, "you're fired."

I am presently with cardiologist No.5, and have been for almost a decade.  I knew I was right about my heart issues, and wanted to be right, just not dead right.  Since I have been with cardiologist No.5, I have been diagnosed with 8 chronic heart issues, and with incurable pulmonary hypertension.  I do get some satisfaction in that I always knew there was something wrong with my heart, but when I think about where I am now in regard to my health, being right doesn't necessarily leave you with a good feeling. 

Yes, cardiologist No.5 has prescribed pills, but never antidepressants, only those pills that will help slow down the progression of both my heart and lung issues.  And when a pill she has prescribed is found to be impossible for me to tolerate, she immediately takes me off of it.  She recognizes the difference between when pills might be the answer, or when it takes more than a band-aid to fix the problem.

In today's world, when a physician has difficulty in finding or explaining an actual diagnosis, especially with a female patient, they come to the conclusion, which I refer to as the easy way out, that it must be depression, anxiety/panic attacks, anything that makes them feel better about not knowing the answer or what to do next.  For them, if the diagnosis isn't an easy one, or doesn't happen in the first few visits or through a couple of tests, they then just suggest pills.  Sadly some do it for the kickbacks they acquire through the pharmaceutical companies, both legally and illegally.

You should question any suggested prescription(s), research the drug(s), and if it doesn't feel right, then more than likely it isn't right.  Never take a drug at face value.  If you have one medical issue, and the risks of taking the drug cites 20 or more possible side effects from taking it, anywhere from serious to dying, you must then decide for yourself whether or not the risks outweigh the benefits.  It's your body... it's your life... you have a choice.  

Pills without a diagnosis are like putting a band-aid on a femoral artery bleed.  it doesn't work.

My Blog​​​

Strong people stand up for themselves,

but stronger people

stand up for others...


Stress & Sadness After a Tragedy

October 3, 2017

On the evening of October 1, 2017 our country experienced the largest mass murder ever in it's history.  Last count was 59 dead, with over 500 injured.  This horrific tragedy took place on a beautiful, warm, starry night, with thousands of country music fans attending a country music festival in Las Vegas, which sadly, and ironically, was directly across the street from the Mandalay Bay Resort, where a sick individual busted out two windows and began raining down a shower of bullets on the unsuspecting crowd.

I can't imagine the horror of what these fans experienced at that moment when they realized that the sound they heard was not firecrackers, but blasts of gunshots.  Chaos and panic arose and by the end of the night, some made it out...some didn't.  For most of us, we are left to mourn individuals we never knew, pray for the wounded, and ask ourselves how can we help.  Some want to politicize this event, while others just want, and need, to mourn and deal with their feelings of helplessness, sadness, anger, frustration, and so much more.

In time, most will move on with their daily lives with no thought of this tragic event.  For others, even if they were not directly involved, they will suffer for long periods of time, due to replaying the video/photos of the panic, the dead and the wounded, over and over in their minds.  I say to those individuals, GET HELP!  Don't feel guilty because you weren't involved yet still can't cope with the loss.  See a therapist who can guide you through the process of healing.  Without healing, your sadness can soon turn to depression, even to the point of becoming suicidal.  Your feelings of never feeling safe again can become very stressful, leading to health issues you could never imagine before.

I had a different topic I wanted to address both yesterday and today, however, through my own sadness for those killed, wounded, our first responders, medical professionals, the families of those killed or injured, I was unable to.  It has covered me like a dark heavy blanket that I can't seem to throw off.  I will be seeing a therapist today, and if you are struggling, I encourage all of you to GET HELP as well.  It's not a sign of weakness, but one of strength to admit "I can't do this alone."  You don't have to.

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What Does Patient Advocacy Mean

October 4, 2017

The definition of patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and caregivers.  A patient advocate may be an individual or an organization.  That's the Wikepdia version.  Below is mine.

Being diagnosed with any health care issue, let alone a chronic disease, can be devastating to a patient.  There are so many questions from "what does this mean for me" to "what does this mean for my family and friends?"  If you are one of the lucky patients who is blessed with a wonderful, compassionate, caring doctor like myself, then they will be your very first advocate, as they are the ones who diagnosed you.  They have a vested interest.  If your doctor does not fit this description, find yourself one who does.

Being diagnosed with a chronic illness will rock your world and that of those around you, so a support system outside of that circle of family and friends is necessary in helping you to understand your disease better, to know you are not alone, and to support you without judging you.  Although family and friends want to help, they often don't understand and may question why your're always tired... maybe if you just got out more... you probably just need more sleep, none of which are helpful.  Then there are those family and friends who go into a state of denial, because the very thought of losing their loved one is virtually impossible for them to accept, so they withdraw.

In my case, after being diagnosed with both heart and lung disease, I have found it to be a little bit of both.  The end result is still the same however... my friends and family do not want to talk about the disease itself.  I might get someone who asks what the doctor said, or when a test or procedure will be done, but other than that, its pretty quiet on the homefront of chronic illness.  And this, is why a support group and/or system is necessary.  Patient Advocacy groups may care deeply, but they are not as involved in the emotional aspect of the disease like that of family and friends.  They can however be the voice of reason when others can't.

My first support group was within a large organization, where essentially there was no support.  Attendees, including myself, soon found that they were being used, rather than supported, in the role of an unpaid part-time employee.  So, I left that group and researched others online that might be a better fit for how I was going to deal with my  chronic heart disease (lung diagnosis came later).  Although the organization I decided on, WomenHeart out of Washington, D.C., was a mid-sized organization, not to mention out of state, I chose it due to their website which was filled with valuable women and heart disease information, and the fact that they only dealt with women & heart disease.  During my almost decade with WomenHeart, I began my own WomenHeart Disease Support Group, which I ran for four years, before having to give it up due to my own escalating health issues.  I also testified to members of Congress, provided presentations, worked with the Department of Defense's Medical Research Team, conducted fundraisers for awareness, and worked with various other entities in getting the word out that heart disease was the number one killer of both men and women.

I thought, well if I can't do patient advocacy the way I previously had, how else could I reach other heart patients.  The answer was simple... I'm a writer, so I write from home since I can no longer work outside the home.  I spend my days writing freelance articles for magazines, op-eds and letters-to-the-editor for newspapers, do a few local presentations when up to it, and am now taking the time to re-write my Can You Hear Me Now: or do I need to yell into your stethoscope? book.  And, of course, with my new website, I can reach out to all patients, no matter the disease, when I blog.

I may not know when my time here on earth will be over, but I do know I will be a patient advocate for both myself and for others, until that time comes.  It's my purpose... it's why God placed me here... to "save as many lives as I can," and THAT my friends, is the definition of a patient advocate!   

Strong people stand up for themselves,

but stronger people

stand up for others...


Strong people stand up for themselves,

but stronger people

stand up for others...


The Day My Life Changed

September 25, 2017

Welcome to the very first blog for my Patient Advocacy For All website! There is so much to say about patient advocacy itself, and both being a patient and a strong patient advocate for myself and others.

Fourteen years ago my life changed forever. Having been extremely active my whole life, I soon became concerned when I had trouble getting out of bed in the morning but with difficulty; when going out to the mailbox to get the mail feeling like I had just run a marathon; or walking up a flight of stairs, becoming winded. It also wasn't lost on me that not only was my breathing off, but that I was unusually fatigued, had severe chest pressure all the time, not to mention heart palpitations. These symptoms were both unfamiliar and highly concerning.

I was under an unsurmountable amount of stress in both my personal and professional life at the time, and was quick at first to blame my symptoms on the stress. After about a month, I knew it had to be more than just the stress, as I was getting worse, not better. I made an appointment with my primary physician, who saw me right away, and she immediately suspected that it was my heart. She was so concerned that she had a traveling echocardiogram company come to the office to run an echocardiogram on me. The echo tech didn't seem to be too concerned when she informed me after the test that I had leakage both in my mitral and tricuspid heart valves. She went on to say hat it was minimal and I had nothing to worry about. All I could think was wouldn't NO leakage be nothing to worry about?

My primary physician went ahead and referred me to a cardiologist for further testing, which began my long journey, which felt more like the yellow brick road in the Wizard of Oz with all of it's twists and turns.

At first I was intimidated therefore not asking questions, but the worse I got, the louder I got, and the more confidence I had, eventually firing four Cardiology Wizard-of-Oz's, each one hiding behind the curtain of ego. I didn't need Toto to pull back the curtain to see that I was dealing with cardiologists who were prone to blowing off women with heart disease/attack symptoms.

Had my primary physician not listened to me with something other than her stethoscope, I would not be here today...she saved my life!

Stay tuned for the my next blog where I continue down the yellow brick road in search of answers and a competent cardiologist. Until next time, feel free to contact me with any questions you may have so far. Asking questions early just might save your, or a family member's, life!