My Journey with Heart Failure

I got to know something about heart failure the hard way, by having it.  I also happen to be a health journalist.  So when I got the stunning diagnosis in 2003, I began researching this condition that sounded so fatal.  Not only was my diagnosis overwhelming, but my first encounters with the health care system were dismal.  It took me three and a half months to find good care.   My story is worth sharing because it illustrates how important it can be for a patient to become knowledgeable about an illness and get involved in her own treatment plan.

Heart failure is a condition in which the heart can no longer perform well enough to get adequate blood and oxygen to the body.  With 6 million people living with heart failure in the United States alone, it is already a huge medical problem and will get bigger as baby boomers continue to hit their fifties and sixties.  Heart failure is a serious condition that can be fatal, but I would learn that it often can be managed with the right treatments.  My own research about heart failure changed my life.

In December 2002, I found myself getting fatigued and easily out of breath, with swollen ankles and abdomen. My asthma was normally under control, but I turned to my asthma specialist because of the shortness of breath.  He noticed my swollen ankles and said he didn’t think my problem was asthma.  I had begun to think the same thing.   He told me to see my internist right away who referred me to a cardiologist who gave me a diagnosis in words that roll off the tongue of a heart specialist but shock the patient who hears them:  “idiopathic dilated cardiomyopathy and biventricular congestive heart failure.”  It was those last two words that got my attention. 

I tried to get over my shock and digest the big words of the diagnosis,  searching the internet to make some sense of what had happened to me.  Cardiomyopathy, I learned, is a disease of the heart muscle, and dilated cardiomyopathy means that the heart is enlarged.  When a heart stretches, it is trying to work harder, but an enlarged heart actually functions more poorly.  The “idiopathic” in my diagnosis means doctors don’t know what caused my cardiomyopathy.  Half of the people who are told they have dilated cardiomyopathy have no known reason why it developed.  An echocardiogram that uses sound waves to show the heart beating on a monitor revealed that the amount of blood my heart pumped out to my body with each beat was only 15-20% instead of the normal 55 to 65%.  The left side of my heart was enlarged, the result of struggling to work harder.

My search to understand my condition led me to national treatment guidelines for heart failure developed by expert panels of the American College of Cardiology and the American Heart Association.  I recommend every person with heart failure and their loved ones read these guidelines.  To my dismay,  I saw that I was not on two of the basic medicines proven in clinical trials to treat heart failure and prolong life, an ACE inhibitor, and a beta-blocker.   I turned to a second cardiologist.   He insisted I have an angiogram in which a catheter is threaded through an artery in the groin up to the heart to see if the heart’s main arteries are blocked by fatty buildups that could prevent blood from getting through.  The question he wanted to answer did I have severe coronary artery disease that could cause a heart attack.  I didn’t agree to the angiogram immediately. I didn’t want to have this test because  I am extremely allergic to the dye used in the exam.  So he suggested I see a heart failure specialist, which I did. 

My Journey with Heart Failure

The specialist blew me away with his advice: I needed a heart transplant.  He ordered a stress echocardiogram, the same sound-wave test I had gotten before in a cardiology group practice center, but this time, it would show how my heart functioned when challenged by activity. However, the doctor running the test stopped before getting to the stress part.  “We found what we need to know,” he said.  The specialist would come in to talk to me.

I waited for about half an hour wondering what the heck.   The specialist arrived, sat down beside me, and drew a rough outline of my heart on a piece of paper, shading an area from the left side down and around the bottom.

 “This part of your heart is dead,” he said.  “You have either had one large heart attack or several small ones.”

I felt shocked to my bones because this was news to me and, next, oddly, I felt a deep embarrassment, almost shame.  I was a veteran health journalist and I had not known when I was having a heart attack?  How incompetent of me.

The specialist agreed that I must have an angiogram and said he could give it to me.  The test would take 30 minutes and would likely find several very occluded arteries, he said.  The second cardiologist I had seen, the one who referred me to the specialist, had told me he could do the angiogram in 20 minutes and held out more hope than the specialist did that he could perform some intervention during the angiogram to open the dangerously occluded arteries he expected to find.  I chose the 20-minute man, reluctantly agreeing to this dreaded test.  

I warned this doctor who would perform the angiogram that I am very allergic to the dye he would use in the test.  I had never had an angiogram, but the same iodine-based dye is used in CAT scans as a contrast medium, and years earlier during a CAT scan I suddenly couldn’t breathe.  The doctor assured me he could give me medicines before the procedure that would prevent any allergic reaction.  I took the medicines, the procedure began, and I thought this isn’t so bad, piece of cake.

Then a technician called out “Mary, how do you feel?”  

“I feel strange,” I said.  I had no pain or heaviness in my chest but felt a very abnormal and unsettling sensation in my heart.  “Very strange.” 

The next thing I knew the procedure was over and the doctor who administered my angiogram was hurrying out of the room.  “But I have questions to ask you,” I said to the back of the departing cardiologist.  “You won’t remember the answers,” he said over his shoulder.

As soon as the doctor left the procedure room, a technician who had helped with the test spoke up.  “We had to shock you,” she said.    

 I was dumbfounded.  “I didn’t feel anything.”

“It’s a good thing you didn’t.  It would have been very uncomfortable.” 

I looked down and saw three burn marks on my chest and later found one on my left ribs.  I had died on the exam table and been resuscitated with four electric shocks.  But we found the answer to the doctor’s question, which I would soon learn. 

My accidental worldly departure during the angiogram led the doctor who gave it to admit me for an overnight stay in the hospital for observation; but, although I asked to see him, he would not visit me. He turned my care over to the third cardiologist, the heart failure specialist.  I’m a big believer in all’s well that ends well and was glad to be alive. 

The specialist came to my room and told me what the angiogram had revealed:  my arteries were not at all blocked. I did not have coronary artery disease.  Therefore, reversing what he had told me days earlier, he said I could not have had a heart attack.  My face lit up with a huge smile. “That’s great!” I nearly shouted.

“Not really,” he said, no smile on his face.  “We could have fixed that.”

“So where do we go from here?”  I asked, feeling deflated that he did not share my joy.

“Heart transplant,” he responded.

None of the three cardiologists I had seen, including this one, had put me on the two major recommended medicines for heart failure, an ACE inhibitor, and a beta-blocker.  Yet, without seeing what these drugs could do to improve my own heart’s function, the specialist wanted to take my heart out of my body and sew in a new one.

No, no, no!  You’re jumping the gun, fellah. I was so surprised that after getting such good news from a test that nearly cost me my life he would want to proceed with the same plan as before the test.  I knew I had to get away from this doctor and look once again for good care.  It was now three months since my diagnosis of heart failure and the clock was ticking.  Without proper treatment, heart failure progresses and is deadly.  And one aspect of heart failure is that a person who has it can experience sudden death, dropping dead in an instant unless someone can get to them with a defibrillator to shock their heart back to work.

Frightened and very stressed, I asked myself, “Who do I trust?”  That’s not grammatically correct, but it was what my brain was asking.  The answer came to me:  a neurologist I had seen many years ago at Johns Hopkins Hospital.  I contacted him and explained my situation.  He contacted a colleague who was a senior cardiologist at Hopkins who told me the person to see was Edward Kasper, then director of the Heart Failure and Transplant Service.  Uh, oh, I thought, concerned about the “transplant” part of his title.  But a doctor I trusted was sending me here and I felt this was the right thing to do.

Dr. Kasper listened to my story and then said that he would not consider a heart transplant.  The first thing to do, he said, was to see how I did on an ACE inhibitor and a beta-blocker, along with some other medicines for heart failure.  And if those didn’t work well enough, there were other things to try such as implanted devices to help the heart work better.  A heart transplant was only a last resort.  I was scheduled to begin teaching a university writing course in a few weeks.  Would I be able to do that?  Yes, he said, he was sure I would be feeling much better soon.  I thought he seemed almost nonchalant about my situation, which, actually made me feel relieved.  He expected me to get better.  

I took my new medicines faithfully and began improving. My attitude toward heart failure changed as I relegated it to the background of my life and got back to teaching writing and co-editing a book.  We decided I should get a biventricular pacemaker to correct an electrical timing problem that made my left ventricle beat out of sync.  This problem called a left bundle branch block was not the cause of my heart failure.  But the uneven beating of my left ventricle caused my heart to work harder.  I recovered from heart failure.  I still have my own heart which returned to normal size and is pumping blood out at a very normal 65%.   I continue to take low doses of an ACE inhibitor and beta-blocker, avoid high-sodium foods, and exercise.   Since we don’t know what caused my cardiomyopathy which caused the heart failure, I want to do all I can to avoid its returning.  

My experience with heart failure and the health care system made me realize just how important we, the patients, can be in deciding a treatment plan.  The patient must truly be a partner with her doctor and not passively accept whatever any doctor says to do.  In order to be a strong partner,  you will need to educate yourself to become informed and then get involved in planning your treatment.

What turn might my life have taken if I had not done some research and continued looking for the best care?  Getting the gift of a new heart is a miraculous second chance for those people with severe heart failure who have not responded to medicines and devices to help their hearts work better.  But a heart transplant also means a lifetime of taking many medications, having some serious side effects, and getting tested repeatedly.  Let’s be sure those who get this precious gift need it.  I, thankfully, did not.

What is Mitral Valve Regurgitation that led to Elizabeth Taylor’s Heart Failure?

I am saddened that Elizabeth Taylor died today of heart failure.  In his appreciation of her, film critic Roger Ebert said in the Chicago Sun-Times, “Of few deaths can it be said that they end an era, but hers does.” 

She is a star that many of us felt we knew.  She was a great actress and a woman of great beauty who was a hard-working champion of people with AIDS and always seemed to be a determined person who knew herself. Yet she always had a vulnerable side.  So many marriages, so many illnesses, so many, many surgeries, over 40, I’ve read.  And then her heart problem developed.  This leads me to talk a little about that problem, mitral valve leakage.

The heart’s mitral valve

The heart has four chambers and four valves that open to let blood through to the next chamber of the heart and on out to the body and back.  The valves, acting as gates, then immediately close to prevent the blood from running back where it just came from. The mitral valve looks like a mouth with leaflets that look like lips that open and close.  When I saw it in action on an echocardiogram, a test that uses sound waves to show moving pictures of the heart, I thought it looked like a very sensuous mouth.  Each of the valves looks different.  But because it looks like a mouth, the mitral valve stands out.  Blood has just left the lungs carrying oxygen and arrives at the left atrium of the heart.  The mitral valve’s mouth opens to let the blood pour through into the left ventricle.  As the left ventricle contracts, the mitral valve closes and the aortic valve opens to allow blood to leave the heart and get out to the body. 

Heart Failure

A mitral valve can start to leak.  This can range anywhere from a condition that is minor and does not need treatment to a serious problem that leads to a weakened heart and heart failure.  In Elizabeth Taylor’s case, it led to heart failure and her symptoms must have included difficulty breathing and fatigue.

I asked Edward K. Kasper, M.D., director of clinical cardiology at Johns Hopkins Hospital, to talk a little about what can go wrong with a mitral valve.  I should mention for disclosure that Ed is my cardiologist and co-author with me the book Living Well with Heart Failure, the Misnamed, Misunderstood Condition:

A leaky mitral valve – mitral regurgitation, is common and has many causes. Most people tolerate a leaky valve well, but some need surgery to correct the leak. Repair is preferred to replacement. The MitraClip (which was used for Elizabeth Taylor) is a new technique to try and fix mitral regurgitation in the cath lab rather than in the operating room. There are no long-term comparison studies of this technique compared to standard OR repair – that I know of. Repair is currently the gold standard for those who have severe mitral regurgitation and symptoms of heart failure.  Outcomes are better including improvement in symptoms and survival in patients with the repair rather than replacement.

What makes a person from a leaking mitral valve to heart failure?

The leakage back into the left atrium increases the pressure in the left atrium. This increased pressure in the left atrium is passed back to the lungs, causing fluid to leak into the lungs, leading to heart failure. With time, the demands of severe mitral regurgitation on the left ventricle will lead to a weakened left ventricle, a dilated cardiomyopathy (disease of the heart muscle). We try to prevent this by operating before it gets to that point.

Mitral regurgitation can also be a consequence of dilated cardiomyopathy – the orifice of the mitral valve enlarges as the left ventricle enlarges. The leaflets of the mitral valve do not enlarge. Therefore, they no longer close correctly, leading to mitral regurgitation. 

It’s easy to see why anyone would want to opt for the Evolve MitraClip over open-heart surgery.  The MitraClip is a little different from a common test known as an angiogram in which a catheter is passed through the femoral vein in the groin up to the heart.  In this repair procedure, however, the catheter guides a clip to the mitral valve where the metal clip covered with polyester fabric is positioned over the leakage and brought down below the open flaps and back up, fastening the valve’s open leaflets together.  The manufacturer, Abbott, shows in a video here how blood still is able to pass through on either side of the fastening. 

Elizabeth Taylor got her MitraClip repair a year and a half ago, so it must have worked for a while.  Then about six weeks ago she was hospitalized with heart failure at Cedars-Sinai Medical Center in Los Angeles where she died with her family at her bedside.  For more on mitral regurgitation, see this NIH site.

Heart failure has many other causes.  High blood pressure can damage the lining of blood vessels leading to deposits of cholesterol.  Coronary artery disease causes heart attacks.  A heart attack kills part of the heart muscle, forcing the rest of the heart to work harder and in doing so, get large and weak. Only about half the people who develop heart failure have a weak heart.  In another cause of heart failure, the left ventricle becomes stiff and the heart does not fill properly.  And in some heart failure, the heart itself is normal but connecting blood vessels are not or a valve may be too narrow.  In all of these cases, a person is said to have heart failure because the heart and vascular system are not able to provide the body with the blood and oxygen it needs. 

The HeartSense Helpathon: Second in a series

Helping Each Other to Good Health:  Preventing Heart Disease

Brian Mossop trained to be a neuroscientist but then decided that writing about science was more fun and quickly became a well-known science writer.  If there is a genetic predisposition to athletic pursuits, Brian must have one because he started competing in sports as a preschooler and is a self-described “exercise fanatic”.  Whether or not he has a genetic drive to pursue athletics, he also has days when that motivation to exercise is just not there.  But with a family history of heart disease and experiencing what can happen to your body when you don’t exercise and eat right, he pushed forward with an intense exercise program, choosing running and Crossfit to keep his heart healthy. 

Running, biking and walking are all forms of aerobic exercise that increase your heart rate, build your heart’s endurance, and help muscle function in your legs and arms.  Crossfit is a program that includes resistance exercises and strength training that target muscles, building muscle endurance and the ability to respond quickly and more powerfully.  People with controlled heart failure can benefit from both aerobic and resistance exercise, but please avoid straining with heavyweight lifts and learn correct breathing patterns when doing resistance exercises. We will discuss in more detail strength training for people with heart problems in a future article in this series.

I am delighted to bring you this adventurous, disciplined commitment to healthy living in Brian Mossop’s guest blog post below. 

Why I Run

I’ve been a competitive athlete for as long as I can remember.  Um, wait, scratch that.  See, there was this period during the end of grad school and the start of my first postdoc, when I was completely burned out, and fell into some bad habits.  But let’s start at the beginning.

I started participating in organized sports at an early age, around age 4 or 5, according to my very proud mother, who beams with excitement when I ask her to recall sports stories from my childhood.  Personally, I think my parents just got tired of my incessantly asking them if I could play tee-ball, so they signed me up thinking my interest wouldn’t last very long.  But the trend continued, all the way through college, where I was a short distance sprinter – 50m, 100m, 4×100 relay – at Lafayette College.   

I stayed fairly active for my first years of grad school, but soon the humdrum of lab life caught up with me.  It started innocently enough, bailing out on a workout or two during the week when I just couldn’t muster the energy to change into exercise clothes.  Next thing I knew I was about 30 pounds overweight and none of my clothes fit.  I forgot where the gym was located.  My LDL cholesterol and blood pressure were in bad shape, both on the verge of requiring pharmaceutical intervention.

But the depressing blood work results, not to mention my expanding mid-section, lit the fire under me.  Several of my maternal uncles had multiple heart attacks – one of them was at the tender age of 35 when the first one hit – and this was one family tradition I didn’t care to follow.  

Instead of drowning my sorrows in pints of Ben & Jerry’s – an all-too-familiar trend during those times – I decided to start doing something crazy: road racing.

Being a sprinter, I had never done much long-distance work.  In the past, making it around the 400m track just once was an accomplishment for me.  Plus, my closest friends from college are hard-core distance runners.  And by that, I mean they are really, really fast.  Like a 2:30ish marathon fast.  Top 50 in the Boston Marathon fast.  Fast fast.  You get the point.  So getting into this road racing business was a bit intimidating.  I didn’t even tell my best friends what I was doing until shortly before my first race.  

I started out slow, running just twice per week, a sluggish mile or two at a time.  Week by week runs became easier, and I found myself starting to push myself to go further, and faster.  I started watching what I ate, making smarter choices on trips to the refrigerator.  As the months passed, I began feeling better than ever and had wrangled my waistline back to its proper diameter.  My annual physical revealed more good news, as my cholesterol and blood pressure were now held in check.

As I got into better shape, I once again started feeling the familiar, competitive itch.  I was then running about 25+ miles per week, and I thought signing up for an organized event would be a great way to feed my enduring desire to race.  Several half-marathons later, I still was unable to quell my inner adrenaline junkie.  No matter what kind of running workouts I did – 800m repeats, tempo runs, fartlek, you name it – I still couldn’t feel that rush of blood and emotion that is a sprinter’s life force.  

A co-worker told me about a new workout program she had gotten hooked on, called Crossfit.  Though I was reluctant to shelve the free-weight routines I’d been relying on since high school for what seemed to be just another fad, I decided to give it a fair chance.  

The Crossfit idea was simple enough: go to the website to find out the Workout of the Day, and do it.  The exercises were a mix of things like plyometrics, Olympic lifts, and bodyweight exercises (pushups, pullups, etc).  The amount of weight to use and the number of repetitions to perform were prescribed on the website for each exercise.  Contrary to most weight training methodologies, you got “better” by completing the workout faster, instead of boosting the amount of weight used, which gave a nice cardio burn throughout the session.  

At the time, Crossfit gyms were springing up all over San Francisco.  A new breed of trainers had turned old, converted warehouses into places where people could meet and work out together, making weight training into a team sport.  

For me, exercise has been a way to actively battle my family history of heart disease, while simultaneously holding my stress levels, and possibly even my cognitive ability, in check, as studies have shown the immense value of voluntary exercise on the brain.

It took quite a bit of trial and error for me to find the exercise routine that worked for me.  In the months before I got hooked on road racing and Crossfit, I tried it all: racquetball, swimming, the list goes on.  And so when I hear people become quickly discouraged with their New Year’s resolutions to get in shape, I try to help them discover the many, many ways to get the heart rate up.  

Getting back into a regular exercise routine was not easy.  I struggled quite often.  And I still have days where I don’t feel like going for a run.  But one thing to remember on the dark and dreary days: you’re not alone.  Every athlete, from newbies all the way up the chain to the elites, struggles with motivation from time to time.  

When my motivation tank is running on fumes, I usually do one of two things.  First, I’ll call up a friend and schedule some time for a nice, slow run with a running buddy.  Whether it’s a quick lunchtime trot, or a long weekend run, the small talk with your running buddy will make the time, and distance goes by much faster.  Second, I’ll start tracking my runs online using an exercise log like Running AHEAD, now in beta testing, or a cool gadget like Nike+.  These are relatively inexpensive, and provide a great way to keep tabs on my progress, and see how I’m improving each week.

Finding the exercise that’s right for you trigger those dopamine reward circuits in your brain, and will, eventually (I promise you!) turn exercise from a measly chore into your favorite hobby.

Follow the Money

I’ve been working for a couple of months on an in-depth article on personal defibrillators that are implanted beneath the skin of a person’s chest to shock a heart that starts shaking, thereby restoring its normal beating and preventing sudden death.  Discussing these

I’ve been working for a couple of months on an in-depth article on personal defibrillators that are implanted beneath the skin of a person’s chest to shock a heart that starts shaking, thereby restoring its normal beating and preventing sudden death.  Discussing these defibrillators is extremely complex, which is why I am spending so much time on researching and writing the article intended to help patients and their families make an informed decision by learning the truth about the devices known as implantable cardioverter defibrillators (ICDs) — the good and the bad, your life saved vs nothing happening or the accompanying risks and harm you may receive.  So when I heard that a new study would be presented at the annual scientific meeting this week of the Heart Rhythm Society, a professional organization of cardiologists and electrophysiologists who use cardiac devices in their patients, I made sure to get an advance copy of what would be presented and interview the lead author.

Potentially such a study would be of interest to physicians and to patients considering getting an ICD because it looked at all shocks the defibrillators gave the heart in patients who took part in the clinical trial, including those sent for life-threatening rhythms and in error.  For several reasons, I felt the study is not ready to report to the public.  It is only an abstract.  The full study has not yet been written, let alone published in a peer-reviewed journal or even accepted for publication.  Patients with defibrillators who received shocks were matched to only one other patient who was not shocked, but the two patients were not matched for what other illnesses or poor quality of health they had.  Yet they were matched to see who lived the longest and the study looked at death for all causes, not just heart-related. One critical question the study sought to answer was this:  Do the shocks themselves cause a shortened life (even if they temporarily save it) or is a shortened life the result of the types of heart rhythms a person experiences?

defibrillators

But the thing that really slapped me in the face and gave me pause was the exchange of money.  In all stories I write on drugs or medical devices, I have begun asking the sources I quote for any conflicts of interest they have with pharmaceutical companies that make these products and I list the conflicts within or at the end of the story.

Nowadays with the spread of COVID-19, it is of utmost importance that these patients take extra care about their health, as COVID get more severe where patients are suffering from other illnesses like sugar, asthma, and heart issues, these patients should regularly test themselves against COVID by rapid antigen test kits, now easily available in the market.

This study was funded by Boston Scientific, a pharmaceutical company that makes defibrillators.  And all eight authors of the study from different medical centers had financial ties to Boston Scientific.  All of them?

Would I be surprised if the study found that it was not the defibrillator’s shock that shortened life?  In the few write-ups that I’ve seen on this study presented Thursday, the lead author is quoted as saying that not the shock, but rather the type of rhythm is what was associated with a shortened life. 

This study that was able to look at shocks sent for a variety of heart rhythms and for other reasons may be a valuable study.  But I can’t help wonder, both as a journalist and as a potential patient, if the study would have been designed differently and reached any different conclusions if no money exchanged hands between a company that makes defibrillators and the eight physicians who designed the study and wrote its conclusions.  I am not making any accusation here. 

I simply am saying that I am made to feel uncomfortable by the financial association of the doctors and big pharma.  Why do doctors do this? Should organized medicine and university medical centers forbid doctors who have any financial ties to a company from participating in a clinical trial of a product that the company makes? 

Especially if the company is funding the clinical trial?  That would eliminate a lot of doctors.  But the tide is changing and some financial arrangements once commonplace between doctors and industry are no longer allowed at some major university medical centers and everything is under more scrutiny than before.  We were discussing this matter of conflicts of interest Tuesday in a university class I teach to doctors who want to write for the public.

Both doctors and journalists should be truth seekers, and seeking the truth is best done independently.  Would the public be able to trust my long-researched piece on the truth about defibrillators if it turned out that I am being paid to write press releases for one or more of the companies that make these defibrillators?  Or if I wrote speeches for executives of these companies?  Or if I served as a consultant to the companies on public relations?  As a journalist, I could not consider receiving money from groups I write about. Why should doctors be allowed to receive money from companies who make a product they are using on patients in a clinical trial that purports to provide answers to serious questions about the product?

As I was wrestling with this issue and whether to write about why I am not writing about that study, journalists with Pro Publica published several articles on their website and with USA Today on money ties between big pharma and the Heart Rhythm Society. 

When I first began attending various cardiology organizations’ scientific meetings I was taken aback by the number of physician speakers who would begin their talks with a conflict of interest slide that stayed visible only for what seemed like one second before the speaker clicked to the next slide, visible just long enough for the audience to see there was a long list of financial ties to industry, but not long enough to read what they were.  The slides were there because the doctor organizations were requiring transparency.  But what was happening was not transparent because nobody could read what was on those slides.  How rare but heartening it was when a speaker began a talk by saying “I have no conflicts of interest.”  That is changing and more doctors are able to say they have no conflicts. But much more needs to change.

I was also amazed to see the large numbers of “non-official” scientific sessions sponsored by individual pharmaceutical companies and listed in the official scientific programs — with leading cardiologists as presenters and well attended by conference-goers — that preceded the official program at these major cardiology meetings. What portion of these presentations used company slides and drove home company messages?  After seeing all this, I remember holding my breath as I asked the cardiologist I had invited to co-author a book with me about heart failure if he had any financial conflicts of interest with the industry.  I felt that if he did have, I could not write the book with him.  How relieved I was when he said he did not.  

Pharmaceutical industry financial relationships with individual doctors and with organizations of doctors are important to the public welfare because these relationships can influence judgment and decisions, can influence what is said and not said in writing about medical products, and in speaking to and advising patients.  And that is why these relationships are important to journalists who are servants of the public. 

As for my long-researched piece on defibrillators, I have found more studies to read and a couple of new interviews to do.  I believe that this examination of the truth about defibrillators that I am writing for a well-known magazine’s website will be worth reading, and once it is published there, I will reprint it here. 

is extremely complex, which is why I am spending so much time on researching and writing the article intended to help patients and their families make an informed decision by learning the truth about the devices known as implantable cardioverter defibrillators (ICDs) — the good and the bad, your life saved vs nothing happening or the accompanying risks and harm you may receive. 

So when I heard that a new study would be presented at the annual scientific meeting this week of the Heart Rhythm Society, a professional organization of cardiologists and electrophysiologists who use cardiac devices in their patients, I made sure to get an advance copy of what would be presented and interview the lead author.

heart

Potentially such a study would be of interest to physicians and to patients considering getting an ICD because it looked at all shocks the defibrillators gave the heart in patients who took part in the clinical trial, including those sent for life-threatening rhythms and in error.  For several reasons, I felt the study is not ready to report to the public.  It is only an abstract. 

The full study has not yet been written, let alone published in a peer-reviewed journal or even accepted for publication.  Patients with defibrillators who received shocks were matched to only one other patient who was not shocked, but the two patients were not matched for what other illnesses or poor quality of health they had.  Yet they were matched to see who lived the longest and the study looked at death for all causes, not just heart-related. One critical question the study sought to answer was this:  Do the shocks themselves cause a shortened life (even if they temporarily save it) or is a shortened life the result of the types of heart rhythms a person experiences?

But the thing that really slapped me in the face and gave me pause was the exchange of money.  In all stories I write on drugs or medical devices, I have begun asking the sources I quote for any conflicts of interest they have with pharmaceutical companies that make these products and I list the conflicts within or at the end of the story.

This study was funded by Boston Scientific, a pharmaceutical company that makes defibrillators.  And all eight authors of the study from different medical centers had financial ties to Boston Scientific.  All of them?

Would I be surprised if the study found that it was not the defibrillator’s shock that shortened life?  In the few write-ups that I’ve seen on this study presented Thursday, the lead author is quoted as saying that not the shock, but rather the type of rhythm is what was associated with shortened life.  This study that was able to look at shocks sent for a variety of heart rhythms and for other reasons may be a valuable study.  But I can’t help wonder, both as a journalist and as a potential patient, if the study would have been designed differently and reached any different conclusions if no money exchanged hands between a company that makes defibrillators and the eight physicians who designed the study and wrote its conclusions.  I am not making any accusation here.  I simply am saying that I am made to feel uncomfortable by the financial association of the doctors and big pharma.  Why do doctors do this? Should organized medicine and university medical centers forbid doctors who have any financial ties to a company from participating in a clinical trial of a product that company makes?  Especially if the company is funding the clinical trial?  That would eliminate a lot of doctors.  But the tide is changing and some financial arrangements once commonplace between doctors and industry are no longer allowed at some major university medical centers and everything is under more scrutiny than before.  We were discussing this matter of conflicts of interest Tuesday in a university class I teach to doctors who want to write for the public.

Both doctors and journalists should be truth seekers, and seeking the truth is best done independently.  Would the public be able to trust my long-researched piece on the truth about defibrillators if it turned out that I am being paid to write press releases for one or more of the companies that make these defibrillators?  Or if I wrote speeches for executives of these companies?  Or if I served as a consultant to the companies on public relations?  As a journalist, I could not consider receiving money from groups I write about. Why should doctors be allowed to receive money from companies who make a product they are using on patients in a clinical trial that purports to provide answers to serious questions about the product?

As I was wrestling with this issue and whether to write about why I am not writing about that study, journalists with Pro Publica published several articles on their website and with USA Today on money ties between big pharma and the Heart Rhythm Society.  See  here, here, here and here

When I first began attending various cardiology organizations’ scientific meetings I was taken aback by the numbers of physician speakers who would begin their talks with a conflict of interest slide that stayed visible only for what seemed like one second before the speaker clicked to the next slide, visible just long enough for the audience to see there was a long list of financial ties to industry, but not long enough to read what they were.  The slides were there because the doctor organizations were requiring transparency.  But what was happening was not transparent because nobody could read what was on those slides.  How rare but heartening it was when a speaker began a talk by saying “I have no conflicts of interest.”  That is changing and more doctors are able to say they have no conflicts. But much more needs to change.

I was also amazed to see the large numbers of “non-official” scientific sessions sponsored by individual pharmaceutical companies and listed in the official scientific programs — with leading cardiologists as presenters and well attended by conference goers — that preceded the official program at these major cardiology meetings. What portion of these presentations used company slides and drove home company messages?  After seeing all this, I remember holding my breath as I asked the cardiologist I had invited to co-author a book with me about heart failure if he had any financial conflicts of interest with industry.  I felt that if he did have, I could not write the book with him.  How relieved I was when he said he did not.  

Pharmaceutical industry financial relationships with individual doctors and with organizations of doctors are important to the public welfare because these relationships can influence judgment and decisions, can influence what is said and not said in writing about medical products and in speaking to and advising patients.  And that is why these relationships are important to journalists who are servants of the public. 

As for my long-researched piece on defibrillators, I have found more studies to read and  a couple of new interviews to do.  I believe that this examination of the truth about defibrillators that I am writing for a well known magazine’s website will be worth reading, and once it is published there, I will reprint it here. 

Cardiologists comment on Heart Failure Death Statistics blog post

Some of my HeartSense blog posts are picked up and published on CardioExchange, a social network run by the New England Journal of Medicine which, as I write this, has 2,572 members.  The site was established as a safe environment for cardiologists to exchange views candidly and learn of breaking cardiovascular news quickly. I thank CardioExchange for extending an invitation to me, a journalist, to join its site and for finding some of my posts worth their time to read.  I learned yesterday that the public can see blog posts at the site but can not see comments.  And so with permission from Harlan Krumholz, editor of CardioExchange, I reprint comments made to my post “Heart Failure Death Statistics: Don’t believe what you read on the internet”.  I reprint only those comments made by doctors who also gave me permission to publish their comments here.  

Some commenters agreed that there are glaringly wrong statistics about life expectancy with heart failure on the internet and some expressed strong beliefs about the need to pursue the prevention of heart disease.  

To read the blog post that drew these responses, please scroll down to the post titled “Heart Failure Death Statistics”. 

Below are comments reprinted from CardioExchange:

Mark Dayer, PhD MRCP Physician, Taunton, , GB
Competing interests: none

I could not agree more. I now have to advise patients to be a little wary of the statistics quoted on many reputable websites. Although mortality for patients with intractable and unstable symptoms remains high, for many the annual mortality is much lower. I would hope that organizations such as Kaiser Permanente which collects a lot of data on patients electronically will be able to answer this question in time. In the UK more and more hospitals are routinely collecting data on all heart failure admissions and mortality data will follow from this.

Heart Failure Death

Mary Knudson, Health Journalist Other, Silver Spring, MD
Competing interests: none

So glad to hear you say this. Thank you for telling patients that much of the time heart failure is not what it sounds like and that life expectancy for people with heart failure is increasing. I recognize that mortality remains high for patients with intractable symptoms, and for some others, there is the possibility of sudden death. But I wish all reputable websites would take the responsibility of publishing prognosis statistics they can gather from experienced cardiologists who see many heart failure patients or else just not address the subject at all. What is not right is to frighten newly diagnosed patients who are seeking information about their condition and read these terribly outdated death statistics. 

I applaud what the UK hospitals are doing. I wish in the U.S. we could create a national registry or a huge prospective study in which information is collected uniformly and patients’ doctors would give out the information on the cause of death for the registry rather than have a third party try to ascertain from death certificates who died of heart failure. In addition to accurate death rates of people dying from heart failure itself and those experiencing sudden death, we could learn what medical regimens those who died were on and see if there is a pattern of people dying who didn’t get the best treatments. We not only want to know how many people die of heart failure. We want to know why they die. We could also gather a trove of genetic data that one day could be very helpful.
Thank you very much for commenting.

Barry M. Massie, BA (Harvard), MD (Columbia P&S) Physician, San Francisco, CA
Competing interests: none

I remember talking to Mary Knudson some time ago. I made the point that there is no one mortality rate for heart failure patients. Patients hospitalized for their first episode of heart failure have a poor prognosis, especially if it is caused by myocardial infarction, and the 50% 50-60% year mortality rates reported from the Framingham study in the late 1990s were astonishing. As noted by other commentators, these deaths often are not caused by heart failure or even related to cardiovascular disease. In a follow-up study from Framingham published in 2002, however, there was these rates had declined by 31% and 32% in men and women, respectively. Most of this improvement occurred between 1980 and 2000 and probably reflected the impact of ACE inhibitor and beta-blocker therapy. 
But numbers don’t tell the whole story.

Framingham MA, a relatively homogenous, middle-income town is not reflective of the United States. Nor is Olmstead County MN, mentioned by Ms. Knudson. By and large, residents of these communities have good access to health care. Another source of statistics is the data generated from large clinical trials. Compared to epidemiological studies, these patients uniformly have a much better prognosis. Why? They are carefully selected for the absence of other serious comorbid conditions and for their adherence to treatment. Their follow-up in the trial is frequent and rigorous. In these, mortality rates often fall below 5-8%/year, even in the control groups.

Despite what impresses me as a dramatic improvement in the outcomes of heart failure patients in the more than 30 years I have worked in this field, we still have a long way to go. Unfortunately, the attention focuses on the dramatic treatments that make it to TV—transplants, left ventricular assist devices, implantable defibrillators, stem cells. Yes, these work, but the costs are high, and the numbers of appropriate candidates for these are relatively small and will remain limited.

Hence, my plea would be that we shift our focus to prevention. Heart failure is relatively easy to prevent but will take a shift in our behavior. Early detection and effective treatment of hypertension can prevent up to 50% of all new heart failure cases. Prevention of heart attacks with changes in diet, life style, and smoking cessation will prevent another large number of heart failure cases. Changing diets can have a similar effect.  A decrease of 1 to 3 grams of daily salt would save more lives than all of these high-tech interventions taken together

Those of us who work in the field and keep up with the basic research advances in our understanding of the potential mechanisms causing heart failure and novel treatment targets are aware of the large number of potential therapies that have not been developed because the large pharmaceutical companies prefer to develop “me-too” drugs where the path to approval is more straightforward and the risk is less. Research is risky, but marketing works. In the end, they seem more interested in winning the marketing war than investing in “finding the cure”.  

Using the usual sports adages, if we want to win the war on heart failure, we have to invest. We need to change behaviors, emphasize prevention, and build on the great success of the decades of neurohormonal-directed interventions with novel and complementary approaches. 

This should be the role of the NHLBI. It needs to invest in the next generation of novel therapies, perhaps in partnership with the industry. It should use its prestige and resources to educate the public. As a recent seminal analysis by Bibbins-Domingo in the February 18 issue of the NEJM demonstrated, just a moderate reduction in salt intake (largely driven by intake of processed foods and fast-food restaurants) would have a major impact on cardiovascular outcomes including heart failure. It would be much more cost-effective and save many more lives if we direct our research toward the prevention of heart failure or early diagnosis and modification of the process in its early stages. Wouldn’t this be a wiser way forward investing enormous resources on developing high-tech interventions for the tip of the iceberg of patients with advanced heart failure? 

The HeartSense Helpathon

Helping Each Other Have Good Health

The holidays and cold weather are upon us and with them come stress, overeating, bad food choices, and less incentive to exercise.  So HeartSense is fighting back.  Today we begin a helpathon, a series of blog posts, some by guest writers, some by me, on ways we can help each other be fit and prevent heart disease and other illnesses.  In the coming weeks we will discuss different types of exercise, eating healthy foods, losing weight, and throwing away stress. A couple of friends I talked with on Twitter prompted me to begin this series.  One asked my advice on how to lose the extra weight she has put on.  Another shared that he has felt overwhelmed and tired this month. In the midst of all our commitments to career, the holidays, family, friends, and special projects, we need to make time for ourselves.

Do you have tips you can share with the rest of us on exercising, eating right, busting stress, losing weight, staying serene and happy and healthy?  Please let us know in the comments below and in weeks to come.  I would love to hear from you. 

We who have experienced heart problems have much in common with our friends who have met the challenges of cancer. We all need to eat a healthy diet and exercise regularly. Jody Schoger, a well-known cancer advocacy blogger and communications consultant with a passion for cycling and walking kicks off our Helpathon with the first of our posts on exercise.  Don’t be scared off by the distances and time Jody puts into cycling and walking.  Start the exercise habit and do it regularly, even for 20 to 30 minutes a day.  I think you’ll find the joy she gets from these great exercises.

Jody Schoger turned to exercise to help work her way out of two health issues as she explains below in her delightful account of becoming an accidental athlete.  She is now cancer-free after receiving a diagnosis of stage IIIB breast cancer in 1998 and she is a constant advocate for other survivors as a member of the Breast Health Collaborative of Texas, running a cancer support group, and helping plan Life Beyond Cancer’s annual survivorship conference. She explores healthy survivorship and women’s cancer issues at her blog Women With Cancer, http://womenwcancer.blogspot.com/.

The Accidental Athlete

Thirty years ago if someone told me I’d be cycling 170 miles over the course of two days I would have said:  Why? 

Why in the world would anyone want to subject themselves to something like that?

Today, at 57, my answer is “because I can.”  I am fit enough, in body and spirit, that I can cycle one mile after another in Texas where I live, up long, graded peaks in Colorado, or across the rolling hills of Iowa.  This is the measure of good health, a blessing I’ve had to work hard to first achieve and then, maintain.

By nature, I’m a sloughed.  I’m not at all coordinated, nor do I have any particular athletic gifts.  Let me be honest.  I don’t have any athletic gifts.  My greatest asset is the ability to put one foot in front of the other.  I can walk, I can ride a bike and I can usually have a big laugh at myself.   Given my preferences, I’d squirrel away the winter months under a down comforter with a pile of books, quilt projects, and some Pepperidge Farm Milano cookies. 

But things change.  We grow up, we grow a little wiser.  With that comes understanding of who we are, the gifts we have, and how to make the best of them.  In my case, two different health conditions moved me forward – chronic depression and cancer.  I’ve been knee-deep in both.  The path through clinical depression following the death of my mother when I was in my early 30’s led to permanent changes that helped me cope with breast cancer a decade later.  My deep understanding of cancer’s emotional signature evolved from family history, beginning with the death of a beloved uncle from Hodgkin’s disease.  Both of my parents died of cancer before the age of 60.  My breast cancer appeared in 1998 and then my husband was diagnosed with malignant melanoma in 2001 and again in 2004. At some point in our lives, we need to re-learn how to take care of ourselves in the basic, essential ways, from healthy eating to a deeper look at how we think about and react to stress.  Therapy helps you haul off the real garbage and discover more creative ways to deal with daily debris. 

Helping Each Other Have Good Health

That is how I recovered from depression and how I recovered from cancer.  I walked my way through, and out of it.  The most empowering walk I’ve ever taken was the day I started chemotherapy.  My port had been installed.  I tucked the pump that would dole out adriamycin and cytoxin for three days into my overalls and set out for a walk.  Because I could.  It seemed bizarre, funny, and weird to me that I was out as plain as day, going about my business, and I was a cancer patient.  The thoughts didn’t all add up but that didn’t really matter.  The walk did.

I started a new garden.  I made a bucket list and started quilting, something I always wanted to do. I later switched from walking to cycling to cope with the side effects of a new treatment.  Cycling, since it is a more intense form of exercise, was the best thing I could do to combat the side effects of tamoxifen – severe hot flashes, depression, and thinking difficulties.

Following treatment, I started training for the Avon Three-Day, which is now run by Komen and less rigorous than it used to be.  In 2001 it was a sixty-mile walk, twenty miles a day for three consecutive days.  What a blast!  I followed their training plan, which was excellent. When I’m training for a cycling event I like to cycle four times a week (Mon, Wed., Fri., and Saturday) and walk on alternate days.  

The beauty of walking is you can do so any time of day, anywhere.  I usually take the dog out for at least an hour.  Our minimum walk is probably thirty minutes.  Cycling is more time-consuming but provides greater aerobic benefits.  My rides range from 20 – 45 miles, so the time spent ranges from 90 minutes to four hours.  You have to factor in traffic, stoplights, and pit stops.  On the weekends if I’m training for a specific event, I’ll travel to another location away from city traffic for greater stretches of highway.  In March my husband and I are traveling with a group from The Woodlands to cycle the wonderful expanses surrounding Big Bend National Park.  The weather should be perfect.

The key is to find an activity that you enjoy, know you’ll maintain, and works for your schedule. 

If you want to do the first best thing for your health, take a small step forward. Take a walk. Take a longer walk the next day. You’ll be amazed by the feel of fresh air pumping through your lungs, then suddenly realize that you’ve walked five miles and lost track of time.  Once this happens – and it will — if you keep taking those small steps – it is impossible to go back. 

 And please, take it from this accidental athlete, you won’t want to.