Usually when we read about Hypertrophic Cardiomyopathy, or HCM, someone is dead. Ted Agu. Reggie Lewis. Gaines Adams. Jason Collier. Hank Gathers. It is known as the leading cause of sudden cardiac arrest in young athletes. But most of the people who live with this condition don't fit that bill. I’m one of them.
The list of arguments for and against screening, and the many nuances on both sides are much better dissected at your own leisure, but this is a pretty good starting point. The basic gist of it is this: screening could help save lives and would more than likely raise a flag among serious HCM cases. But the margin of error is almost boundless, as is the diversity in the seriousness of various instances of HCM. It’s a fairly young disease officially, having only been thoroughly documented and comprehensively studied for about sixty years.
In order to more accurately and effectively process the screening tests, the administering doctors and medical staff would need to develop a working familiarity with HCM and ask pertinent questions related to symptoms that might be associated when they see abnormal EKG results. Further testing would be warranted. The AHA does not recommend these simple screening techniques as a guaranteed catch-all because cases will invariably be missed, and they’re not wrong in that concern.
But I’m not here to pretend to be a medical expert or argue for or against screening. This is about the human perspective, given from my point of view as someone who has HCM. Put in its most basic terms, HCM is a genetic condition that causes heart muscle to thicken for no apparent reason. This makes your heart work extra-hard to perform normally. You counteract it with medications to slow the heart down, which slows you down. That's in my case, in a nutshell. It varies.
I met Mitch Cole in 2012 at the annual HCMA convention. I’d only known I’d had it for about a year and I was surrounded by people much older than myself who wore their name tags and badges with pride. They were out and proud with heart disease and it was a little overwhelming.
Then I heard Mitch speak during the last session. He was one of the two fellow patients I met there that weekend who was younger than me. He told us all that he knew he had it, knew what to look for, and though he’d retired from competitive football that year he still continued to train, coach kids, and live the way he always had. I sat with him for a little while at breakfast on the last day. It turns out his offices were in the next town over from my wife’s relatives in England. I’d been dragged to the mall there on a few occasions. We laughed. We ate bacon. We talked about anything but heart problems and it was a relief.
I admired his tenacity and his resoluteness on a certain level. "Football is what I do," he’d said simply. Some people thought there was at least a trace of too much willfulness in his refusal to make total concessions, but at the same time he had never felt any sort of chest pain or suffered symptoms. It was difficult for me at that time to argue with the logic, because neither had I. But hearing about his death made me reassess my attitude. Things like that make you think a lot more than you'd like them to.
HCM is not terribly uncommon. It’s estimated that one in every 500 people has it. I don’t know when it manifested itself in me, but it was probably in the last few years before I was diagnosed. I was an athlete until I graduated from high school. Certainly not good enough to be one in college, but still pushing myself as hard as possible. Unfortunately, it is often mistaken for other things such as asthma or a heart murmur in younger people. Large-scale screening would be expensive to administer properly and not entirely accurate, although as the WSJ points out many universities are now taking the first step, which is good. Most athletes who die from this would not be competing at their level if they knew they had it. Those lucky enough to discover in time will retire, like Cuttino Mobley of the NBA and Watford and Arsenal goalkeeper Manuel Almunia.
I was asymptomatic when I was diagnosed a few years ago and didn't feel anything different for a long time afterwards. The tendency is to ignore it, to not want it. You want to reject taking pills every day and live how you want to live because you don’t feel like there’s anything wrong with you. You can’t un-have it, and the body will not disperse with it no matter how much the mind wants it to. It’s genetic; woven into your history and makeup. The mental growth is as dark and impending as the physical one. In the past year or two I have felt it chipping away at me; slowly but insistently. You get fatigued more easily. It begins to set more limitations on what you do. Coping with it is a balancing act, and often a frustrating one, but it is better than the alternative. Those of us fortunate enough to know we have it can at least know what we're dealing with.
After you learn you have HCM, at some point you’ll hear your heart pounding and you won’t be able to stop hearing it for a very long time. It roars in your ears and it feels like it shakes the bed at night. You will be forced to watch it on monitors, see video clips of it in infinite loops, see x-rays zoomed in on that little piece of tissue a couple of centimeters thick that is gradually eclipsing your ability to feel normal. You become obsessed. It throbs and wobbles, and sometimes pauses, doing absurd vaudeville calisthenics there in the dark chest cavity of your mind and you’ll be lying there unable to sleep, wondering if something is even more wrong than it’s supposed to be with your own dysfunctioning and thickening heart.
More often than not, you’re fine. Living right is a long and delicate balancing act, but it is not impossible, and you’re probably not going to be at risk of sudden death if you take care of business. It's not a doomsday scenario. It's just a challenge.
We think my paternal grandfather had it, now that we know it's in the family. He was a soldier, a business owner, a little league coach, and a father of three boys. He died at 30 of heart failure. Pretty good account of himself, all things considered.
Five years ago I could fly to London on an hour or so of sleep, get from Heathrow all the way across town via the Underground to Liverpool Street Station, then catch a train 40 minutes out to the town where my wife has family, wrangling all of
our her luggage along the way, and be fine. I couldn't do that now without copious rest stops. I can do less on a treadmill right now than I could even three years ago, despite every other part of me being in better condition. Every part but the heart.
I might have walked past Mitch Cole on the street in the UK on one of those trips abroad and not even realized it. I may have even looked him up on our next one, if not for the fact that I can’t hack it and he wouldn't be there. But I'm lucky: at least I know I have it. I can work with it. A lot of people don't, and collegiate athlete screening is a good place to start since athletes face the highest risk of death.
To learn more about HCM, please visit the HCMA website: www.4hcm.org.