When a doctor tells you you have heart failure several things go through your head. The first is an overwhelming sense of relief that SOMEONE FINALLY knows what’s going on, but the second thing is… WHAT?!? That’s exactly what went through my mind and I expect what my husband thought too. After speaking to other patients this seems to be the normal course of things.
So, you may be thinking, well what is this scary thing we know as Heart Failure? The clinical types around you will say it is a condition in which the heart cannot pump enough blood to meet the body’s needs (citation). Reasons why this happen are varied from congenital (genetic) defects, to viral infections, postpartum onset, a result of heart attacks and heart disease, damage from cancer treatments, or in my particular case …. they have absolutely no idea. Although heart disease is in my family, there has been no instance of sudden death and all tests we have done, and all medical systems that we had to compare in the past, thus far have not revealed any secrets.
Over the years I have come across all of these lists that talk about people at risk for heart failure and every one of them always state ‘over the age of 65’. I was diagnosed at 28. So, really, a list of risk factors are just that, a list. Just because you don’t have any of the risks identified on the list, does not preclude you from potentially getting the disease. As a warning, or a message of hope, here’s something about lists of risk factors you should know. Malcolm Gladwell famously wrote about this idea in his book ‘Outliers’:
“Outlier” is a scientific term to describe things or phenomena that lie outside normal experience….In the case of Outliers, the book grew out a frustration I found myself having with the way we explain the careers of really successful people. You know how you hear someone say of Bill Gates or some rock star or some other outlier—”they’re really smart” or “they’re really ambitious?” Well, I know lots of people who are really smart and really ambitious, and they aren’t worth 60 billion dollars. It struck me that our understanding of success was really crude—and there was an opportunity to dig down and come up with a better set of explanations. (citation)
Our crude understanding of success is no different when applied to medicine. Or for almost anything for that matter. This is an exact parallel to the current research in cardiology of which I am intimately aware. Even with all of the technology available, the research being done and procedures being developed, our understanding of the heart and how it works, especially in concert within the body, is still relatively crude, since there are many illnesses that can affect the body. Sure, we know alot about it’s function – at least relative to the fact that its soul purpose is to move oxygenated blood around our body, but our knowledge of HOW it does this and WHY it sometimes fails is pretty limited. Further, ‘successful’ treatment options focus mainly on managing symptoms – much like a cold. So you see, there is plenty of opportunity for doctors to try and ‘dig down’ and come up with a better set of explanations as to why my heart is failing. Of all the doctors I have seen and tests I have taken, from St. Paul’s Hospital to Harvard Medical School I am left with “we have no idea”. I guess I am comforted to know that my care here in BC is just as good as at Harvard ;). All joking aside – my team of doctors are incredible. They are as frustrated as I about all of this. They are only human, after all.
Since my official diagnosis is ‘idiopathic cardiomyopathy’, which in plain English is roughly, “your heart doesn’t pump well and we don’t know why”, I have had to embrace the uncertainty of my illness and of life in general. As a result, Nick and I have thus chosen to keep living our life the way that we want to – without any hesitations – and only minor modifications. Risks are welcomed, resistance is futile. Because, guess what? Everyone’s life is also uncertain, the only difference between us is, we know it.