How My Hypertrophic Cardiomyopathy Diagnosis Changed My Life

Days after my sister was diagnosed with hypertrophic cardiomyopathy (HCM), my mother, now realizing that our family had genetic hypertrophic cardiomyopathy, took me in to be checked as well.

During those days of wait, I vividly remember wanting, trying, hoping to be able to pray I did not have HCM. But I could not.

As Mark Twain’s character, Huckleberry Finn, said, "You can’t pray a lie — I found that out."

My sister's diagnosis was a shock

It was a shock that my sister had HCM. Yet immediately upon diagnosis, she was told that she was no longer to participate in dance or sports. She was put on heavy medications. She was given a long list of don’ts and told to make many lifestyle changes.

Now here I was, going in to an appointment to see if I had HCM during what has probably been the most pivotal week of my life.

Would I have to give up dancing?

It was the beginning of my senior year of high school. I had been attending an exceptional arts high school. I was in the dance program. But that week, I was making a change.

I had auditioned for and been accepted to the elite pre-professional program at Miami City Ballet. I was going to be finishing up my high school courses online. I would be training in dance 8 hours a day, 6 days a week. My appointment came just a few days before I was to start.

I had been dancing since preschool. I danced in school and after school. I danced summers in New York with the American Ballet Theatre. Dance seemingly was my life, and I always thought it would be my career. I was talented and determined, and I definitely put in the work. Would I have HCM? Would I have to give up dancing? There I was, waiting for that appointment to find out my fate.

A Holter monitor under my leotard

My fate was the same, yet different from my sister’s. I did indeed have HCM. However, my HCM was not as severe as my sister’s.

Listening to me spout my little girl dreams with tear-stained eyes, the cardiologist agreed that I could continue to dance. Of course, follow-up appointments would be every 6 months.

So, there I was, wearing the type of Holter monitor that looked like a CD player under my leotard on a number of occasions, as if that was not obvious.

Upon graduation, I hung up my pointe shoes

As years passed, I was still allowed to dance, though my next cardiologist said it should be at 60 percent. I never understood that back then.

I went on to graduate with a degree in dance performance. During the years I studied for that degree, my HCM progressed. I had to have a defibrillator implanted. I received an S-ICD, which was only slightly less obvious than a Holter monitor. My senior thesis dance was on my relationship with my defibrillator.

After receiving my degree, I hung up my pointe shoes, as my health had deteriorated and I could no longer tolerate the strains of a full-time dance career.

What I wish I'd been told sooner

As I think back on the doctor’s words to "dance at 60 percent," which is obviously not how one dances as a professional, it is clear that he knew I should limit my exertion. I also believe it was clear to him that my HCM was progressing, and that I would only be able to dance for so long. In other words, he knew what my future would look like.

And as nice as it might have been to hold on to my little girl dreams a little longer, I honestly believe at this time in my life that telling me back then would have been the kinder thing to do. I could have focused on what I would be able to do. I may have been crushed once, but not over and over.

Accepting an HCM diagnosis

Living with HCM requires acceptance. Trust requires truths. I believe HCM patients should be able to trust their healthcare professionals to be able to live with HCM.