I’ve been robbed! Someone took my salary for being such a good heart failure patient!

A few months ago, my family and friends approached me about taking a cruise in April 2019.  The trip is through the Viking Cruise line and the itinerary covers the “Trade Routes of the Middle Ages.”  I was immediately intrigued, thinking that this would be a great opportunity to celebrate my 62nd birthday! 

We started to look into the specifics of the trip – which deck we wanted to reserve rooms on, whether there were special packages we needed to purchase, and most important to us who are getting older and hopefully wiser – trip insurance!  My travel agent shared with me a few policies, but when I looked at the pages and pages of terms and explanations, I just shuddered.  I know – I’m a lawyer, but even factoring in my legal skills I got bogged down wading through the convoluted language.​

I reached out to my cardiologist for just some common sense advice to short-circuit the process.  I asked if there were any reasons I should not take a cruise overseas, and any guidance I should have regarding insurance.  He seemed thrilled that I was planning to take this trip.  He said that I should definitely get insurance and provided some information about companies/resources other patients used to purchase insurance.  But he also said:  “don’t overplay the heart failure part.  You are well compensated and you should do well. “

When I was a lawyer in the government, people loved to kid me about the seemingly strange words I used, especially if those words were in Latin.  Well I probably take the same teasing approach with doctors about the words they use.  I really love some of the terms that are used in the medical community that have a medical definition but also a real world definition.  I believe that the first thought that would spring to mind for those of us who are not doctors is that being compensated means that the person is getting paid. 

I can assure you that although I’ve met tons of great people and fared far better in the heart failure world than I expected, I do not get monetary compensation!  Well, I did get money when I was evaluated to see if I was a candidate for a clinical trial.  But other than that – zip, zero, nada – no money has come my way! 

So this is what I am dying to know.  Who do I send my claim for to so that I can recover this compensation, and does it come with interest?  I need an expert in heart compensation to explain whether the IRS treats this as income that is subject to taxation.  Because if so – someone needs to withhold tax from the check.  Or we could argue that my body is a capital asset.  The monetary value of that asset has been impacted by heart failure, and even with this compensation, I have netted a capital loss and no tax is due! 

But of course, the term “compensation” has a different meaning if you are a heart doctor.  The website for the National Center for Biotechnology Information (part of NIH) has the following useful information about being “compensated” and “decompensated” in heart failure: (NCBI is the National Center for Biotechnology Information): 
  

• Chronic heart failure can be “compensated” or “decompensated.” In compensated heart failure, symptoms are stable, and many overt features of fluid retention and pulmonary edema are absent. Decompensated heart failure refers to a deterioration, which may present either as an acute episode of pulmonary edema or as lethargy and malaise, a reduction in exercise tolerance, and increasing breathlessness on exertion.  The cause or causes of decompensation should be considered and identified; they may include recurrent ischaemia, arrhythmias, infections, and electrolyte disturbance. Atrial fibrillation is common, and poor control of ventricular rate during exercise despite adequate control at rest should be addressed. 

So after seeing this, I concluded that I am indeed well compensated and I breathed a sigh of relief.  Why did I reach this conclusion?  Well, because when I look at the descriptions even on my bad days, I do not believe I have ever had pulmonary edema, reduction in exercise tolerance and increasing breathlessness when I have exerted myself. 

Nope - no reduction in exercise.  In fact, I still almost mow down people when I am walking out in public to get somewhere.  As for lethargy and malaise, well I’m approaching 61 and can’t do nearly as much as I used to 10 years ago.  But when I described to my health care providers what I do, they are pretty impressed that what I do would even challenge someone younger and in much better heart health than me!  And as for arrhythmias, infections and atrial fibrillation, I have yet to experience such symptoms.  I have no clue what electrolyte imbalance is, which probably means I don’t’ have this symptom either.  What a relief!!!!

According to the American Heart Association, the body's compensation mechanisms help explain why some people may not become aware of their condition until years after their heart begins its decline.  AHA points out that this is also a good reason to have a regular checkup with your doctor.   I would suspect that this might be because that if the compensation is masking the symptoms of a heart issue, perhaps a doctor in an annual check-up might be able to detect issues with your heart and hopefully lessen if not entirely divert your time with heart failure or other conditions.

So when I start to think about it, compensation would seem to be a good thing, right?  The heart is becoming weaker but other members of the team pitch in to help out.  Isn’t this similar to what used to happen where I worked?  If we had a team member who was sick, or traveling, or for some reason was unable to perform up to speed for a time, the rest of us pitched in?

I guess the answer is it depends.  I have dilated cardiomyopathy.  According to an article on the US News and World Report website, the following describes the compensatory mechanisms that may occur:

• All of these compensatory mechanisms—dilating, stretching, beating faster, retaining fluid—evolved to keep the blood pumping to the body on a short-term basis following an injury or dehydration. In the long term, though, the heart responds like a spring that's been overextended; eventually, it can no longer return to its shape and function effectively. Then the dilated heart becomes more of a dam than a pump, with blood pooling inside an enlarged heart that is no longer capable of circulating blood. The most effective treatments for dilated cardiomyopathy focus on blocking these compensatory responses.

My last echocardiogram showed that my left ventricle is once again enlarged.  So it would appear to me that I may have the mechanism described above that relates to enlarging at least a portion of my heart.  As for the other mechanisms, as far as I know, my heart does not beat faster.  I believe that the medications I take try to block the impact of dilation and retaining fluid.  However, as a results of my recent right heart catheterization, my heart failure doctor has asked me to lessen the dose of the diuretic with the goal of eventually going off this drug.  So it would seem that my compensation mechanisms generally are still working.

But I also came upon a website from an organization called HeartFailureMatters.Org.  This is a website sponsored by the European Society of Cardiology.  The website is designed to help heart failure patients understand their condition, and to become active in their own treatment plans.  There are animations, patient videos and self-help tools and the site is available in 10 languages.   

One of the animations was called how the heart compensates for heart failure.  It said that a result of heart failure is that the amount of blood pumped through the body is reduced.  The heart adapts in three ways:  (1) it beats faster to keep blood moving; (2) the heart expands in size to hold more blood; and the heart muscle becomes thicker to help pump more blood with each beat.  But these compensation efforts put more stress on the heart, and may eventually worsen heart failure.

So when it comes to the question:  Is being well compensated a good thing, or a bad thing?  It is a good thing because my heart is adapting positively to  my heart failure, and there are medications and other measures that we use to make sure that the heart does not weaken further.  But it may not remain a good thing if the body cannot take up the slack any longer and my heart becomes decompensated. 

​Once again, the name of the game is buying time.  During the time that my heart is compensated, there is an opportunity for doctors and researchers to come up with improved alternatives to treat my condition.  We should hope that they are “well-compensated” for their efforts!