Letters to my Son - My Heart Condition

Some years ago, I found out that I have a genetic anomaly that causes a predisposition towards a thickening in a particular area of my heart.

It was fortunate how I even found out.  I had a doctor who was doing a routine physical, and she happened to hear a funny ‘murmur’ that she thought was worth having checked out.  I went for the test and, as you may or may not remember, the cardiac echo test is not particularly pleasant.  The echo found that there was an anomaly, and she said that we would keep an eye on it.  

She advised me to get my life insurance in order, but back then I was 25 or so and thought I was invincible, so I didn't consider that meant much.  In retrospect, that was a huge warning that I should have gotten my stuff in order immediately.  I did not realize that I would never again qualify for life insurance.  The moment of plausible deniability is something that they should teach in school.

Five years went by, and every year I was given a new requisition to have that cardiac echo repeated.  Every year I remembered how unpleasant it was, and I just tossed the order sheet.  After 5-6 years, my family doctor impressed on me how important it was to do the test, so I finally went back.  Sure enough, my thickened area was even thicker, so she referred me to the day-to-day cardiologist that I've seen every six months or so since.

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I worked with her to refine a combination of drugs that would help to limit the force and maintain the regularity of my heartbeat around the increased thickness in my heart.  She also referred me to the leading expert in the world that specializes in the particular condition that I have, Dr Harry Rakowski.  The disease is called Hypertrophic Obstructive Cardiomyopathy or HOCM for short.  

Dr Rakowski gave me a lot of education about my illness and recommended some lifestyle limitations such as limit my heart rate to 120 bpm, restrict any lifting to under 30 lbs, and always stay fully hydrated at all times.  These may seem easy, but to an athlete and active young man like myself, these were devastating.  At first, I was rebellious and ignorant.  I went out of my way to continue pretending there was nothing wrong with me but, soon enough, I started to feel symptoms.  Maybe it was the medication or possibly the feeling of missing the odd pill and feeling what life was like when I didn't have the medical assist helping to keep things in check, but I made the adjustments over two years.  No more basketball, which I had been playing three times a week until then.  No more running, spin classes, yoga or working out, not that I was ever a big gym-rat.   

I spent a couple of years balancing diet to accommodate the shift in exercise but, eventually, I just said "forget it" and let myself put on some weight gradually climbing 30lbs.  

When you came along, the lifting restriction went out the window because once you grew over 30 lbs, I wasn't about to stop picking you up.  I justified it to everyone by saying that you were holding on to me as much as I was holding on to you, but I know that the strain and weight are the same no matter who is hanging on to who.  I wasn't about to ever turn you down if you asked me to pick you up.

As for the hydration, I did get much better at maintaining a proper balance.   Not to say that I didn't occasionally slip, but I was always careful to stay awake longer and drink lots of water.

As I write this today, I have just met with Dr Anthony Ralph-Edwards, who will be my surgeon for an open-heart surgery procedure that will, hopefully, correct some of these problems and indeed give me a new lease on life.  As he put it today, it doesn't particularly change my overall prognosis since I am not expected to have a shortened lifespan as a result of the disease that I have.  Rather, this procedure will vastly increase the quality of my life by reducing symptoms.  

I've always had some symptoms, such as occasional atrial fibrillation, breathing issues, and angina.  Over the last six months, I've had a much more concerning issue which is occasionally feeling lightheaded and almost passing out.  At first, it was relatively random, but now it's happening when I do simple stuff like walking up a flight of stairs or playing golf.  I'm concerned enough that I want to get on to the surgery as quickly as possible.  I've scheduled the surgical pre-test for six weeks from now and the surgery eight weeks from now.