I didn't come into 2021 even daring to hope for a miracle. I was pinning my hopes on a simple reversion to the mean; anything, it seemed, would be better than the year my family and I had in 2020. But a miracle is what I got, and after spending much of last year complaining, I now want to share my good news with everyone in my life.
I was doing my best to prepare myself for likely open heart surgery this winter. But thanks to an experimental drug in a clinical trial, I have, stunningly and suddenly, found myself not only relieved of my symptoms, but possibly, at 63, in the best shape of my life.
I didn't learn that I had a congenital heart malformation (hypertrophic cardiomyopathy, or HCM) until I was in my 40's, and I wasn't aware of its lifelong effect on me until just this year. I was a terrible athlete as a child, always the last kid chosen, and never sure whether to blame my deficiencies on nature, will, or character. But I was fortunate in many other ways. My hyper-intellectual family put almost no value on physical achievements, so I never had a disappointed parent pushing me beyond my capability. (As it turns out, that could actually have killed me, as HCM is the leading cause of sudden cardiac death in young athletes!) Moreover, in non-athletic venues I was a superstar, a child prodigy, and I grew up certain that I preferred my lot to my opposite number, the proverbial dumb jock.
Still, I was hard on myself, always feeling that if I just tried hard enough, I ought to be able to at least, say, jog a half mile. I ignored the fact I was otherwise quite persistent, and never saw my mix of physical abilities and limitations as any kind of clue. For example, although I could never jog more than a few hundred yards, I was always an epic walker -- hiking on the Appalachian Trail as a teenager, and walking several miles daily most of my life, generally briskly enough that people with longer legs asked me to slow down. I was also a dancer, even occasionally teaching and performing, but generally needing to rest between the most vigorous dances. No one ever thought to view this as a medical mystery.
I did know that the men in my father's family nearly all suffered sudden cardiac death in their 40's, 50's, or 60's, and I never expected a long life. My father's terror of that legacy led -- after enough false alarms to raise the issue of hypochondria -- to his diagnosis with what is now known as HCM. Because the condition is congenital, I got tested in my 40's and learned that I, too, was born with this abnormal thickening of the heart wall. Although I had a heart murmur, I didn't appear to have any other symptoms, and the doctors basically just told me to get checked regularly.
After I turned 60, however, the symptoms began. Previously I ran out of breath quickly if I tried to run, but I could walk more or less indefinitely. Now my breath began to run out walking up hills or stairs. I pushed myself blindly until the hot August day 2 years ago when I landed in a Manhattan emergency room. After incorrectly being diagnosed with a heart attack, I learned that my symptoms were due to HCM, and was directed to a specialist.
At the HCM clinic in Ann Arbor, I learned that I was likely to need a septal myectomy. I had always hoped that, if the day came when a doctor delivered bad news, I would be calm and philosophical. So I listened quietly as my doctor explained the plan to crack open my chest, stop my heart, thread a knife through my aorta into my heart, and shave down the muscle of the heart wall. After they picked me up off the floor and revived me, I also learned that, horrible as that sounds, the surgical mortality is less than 1%, with a major complications rate under 5%.
Those are good odds, but I was a math major, and if I heard of a lottery where my odds of winning approached 1%, I might actually buy a ticket. Moreover, there was no rush. HCM patients have "nearly normal" life expectancy if treated properly, but often with increasingly restricted abilities. I could defer the myectomy almost indefinitely, but my symptoms would only grow worse, as would my ability to recover from surgery as I aged. The timing of the surgery was largely up to me, and I began to plan to have it during the approaching winter.
So I started putting my affairs in order, and even increased my walking in hope of losing weight before the surgery. Then larger matters put my little problems in perspective: over the next year, while a pandemic ravaged the globe, multiple illnesses and deaths hit my family. While I had relatively minor heart surgery to implant a cardiac defibrillator in my chest (a requirement for that "near normal" life expectancy), I deferred the big surgery for a year as my HCM symptoms slowly worsened. By June of 2021, I could only climb 15-20 steps before I needed to stop and catch my breath. And then, after the hardest year of my life, came the miracle.
As luck would have it, my cardiologist was the lead investigator in a clinical trial of the first drug ever specifically designed for HCM. Within my first month on the drug, I returned to Iargo Springs, a beautiful local spot I had doubted I would ever visit again because it required climbing 300 steps. When I reached the top after stopping just once -- and only because the people I was with wanted to stop! -- I was so excited I actually jogged around the parking lot in my exuberance!
As of this writing, my symptoms are almost completely gone -- my cardiologist no longer even hears a heart murmur! -- and I won't need the surgery unless they return. I feel healthier and more athletic than I did even as a child, and I'm in a nearly constant state of joy and gratitude. For the first time in years, I can imagine my best days may yet be ahead of me. I am excited to see what comes next!
Wow, that is great news! Take care!ReplyDelete
Wonderful! No such drug yet for my condition (Parkinson's) but with your story hope springs eternal . . .ReplyDelete
I'm so glad this miracle has been developed in time for you, and that it works so well for you!!ReplyDelete
Hooray, sounds even better than dealing with your colorblindness in college:))))ReplyDelete
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Amazing! So happy for you, Don HarbisonReplyDelete
Spectacular! Joy and gratitude is a wonderful lifestyle.ReplyDelete
I, too, have been right place right time medically, not once but twice. Experimental shunt to treat my hydrocephalus at 12 weeks old preventing brain damage, and experimental laser eye surgery in high school to prevent my retina from detaching. I am acutely aware of the privilege of my surgeries (born in America, near great.medical care) and grieve for those who are less fortunate.
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