06 June 2015

Symptomatic Symptoms

I recently read an article about seven symptoms that could signal heart problems. It got me thinking about the long journey I traveled from my first symptoms to my heart surgery in January.

Nearly six years before my operation, I had my first symptoms: crossing a street, my vision began to narrow, my hearing nearly disappeared, I could barely breathe and had trouble walking. I nearly fell over in the middle of the street. I went to my doctor and told him I thought I’d had a mini-stroke. Tests ruled that out.

That incident -- which occasionally recurred -- began a years-long odyssey of visiting doctor after doctor: my regular doctor three times, a pulmonologist, a gastroenterologist, two different cardiac specialists. In each case, tests were done and nothing was found. After a couple years of this, one doctor suggested he should give me a referral to a psychologist because clearly these symptoms were all in my head.

I ended up at an endocrinologist who discovered I had bouts of low-blood sugar after eating. I stayed away from bad carbohydrates and the symptoms seemed to abate. Along the way I found out I had a heart murmur that was, over time, getting more pronounced. Five years after this all started, my general doctor recommended I return to my cardiologist. That was the suggestion that saved my life.

The cardiologist repeated many of the tests he had done a few years before. This time, they found it: hypertrophic cardiomyopathy (HCM). It’s genetic. It’s the thing high school football players suddenly die from. It hits before the age of 20 or after the age of 50. When my symptoms started, I was 49 years old.

Upon researching this, I found out HCM can be very hard to diagnose. Its symptoms mimic many other illnesses (like low blood sugar) and it takes a long time for some of the symptoms to be bad enough to be found in normal testing. In fact, despite HCM being relatively common, my cardiologist told me I was the first patient he’d ever seen who had it. (I presume that’s because most people discover they have HCM when they suddenly die from it.)

I don’t want to say I was lucky to find a diagnosis and life-saving surgery before I dropped dead. Rather, I want to show how persistence is important when it comes to our health. NO ONE will advocate for you. YOU have to advocate for yourself all the time. My years as a journalist have taught me to continue to ask questions until I understand the answer. Ask. Ask. Ask. If your doctor won’t answer, find another doctor. Keep asking until you understand.

It’s not overreaching to say that, had I not kept asking, my HCM would have ended my life by now. And it would have been only then that someone would have seen the damage to my heart and said: “Hmm. I guess he was right. There was something wrong.”

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