My HCM Diagnosis: Understanding the Warning Signs

I was first diagnosed with hypertrophic cardiomyopathy (HCM) in September of 2013 at the age 14, during my first month of high school. The only reason I was even diagnosed was because my aunt was diagnosed, and she told my mother it can be genetic; she recommended I take myself and my siblings to be checked. Luckily, at that point, my mother made an appointment with a pediatric cardiologist straightaway.

Learning the signs of hypertrophic cardiomyopathy

During the appointment, the cardiologist said she did not know how I had not dropped dead yet. When I went home and started searching on the internet, what I found about HCM was that it was asymptomatic and that the first warning sign was most often death. I have to say, that is not much of a warning.

I went about my life for quite a while thinking there were no warning signs, but that was only until I found out what the warning signs were.

Realizing I had experienced HCM symptoms

Not only did I find out what they were, but I figured out that I had actually reported a number of them to my pediatrician and did so on several occasions.

When I did, the pediatrician listened with his stethoscope and told me not to worry; he never referred me to a cardiologist.

I do not think that most anyone could listen with a stethoscope and determine someone has HCM. But I do know that a trained healthcare professional should be able to hear a heart murmur and decide to do further testing, like an echocardiogram.

A history of fainting episodes

So what symptoms of my ‘asymptomatic’ condition did I have, report, or realize?

Before my diagnosis, I had already had several major fainting episodes. The first one happened at a science museum. I was looking at a display. Next thing I knew, I called out to my mom that I felt like I was going to pass out, and then I did.

She did a great job catching me. The paramedics came and asked me if I had eaten that morning. I had, and they still gave me some yummy chicken nuggets, but not a referral for a screening.

Another near-fainting episode came while standing in a very long and crowded line for the log flume ride at Universal Studios. My vision started going. I got disoriented and started bumping into people. It was bad enough that my brother took me out of the line we had stood in for almost 2 hours. But that did not convince my doctor to refer me, either.

I remember my mom asking a number of people, from teachers to friends, about fainting episodes. Every one of them said it was normal for girls my age. Every one of them was wrong.

Other warning signs of HCM

Before my diagnosis, I was extremely active. At school and after, I danced and played basketball. I was the fastest runner. I do not recall experiencing symptoms during exercise. But I do clearly remember clutching my chest when I was resting a few times.

I definitely recall my heart not beating like it should. Sometimes it felt like it skipped a beat or was going very fast. As I said, this was reported to the pediatrician. As I said, he listened with his stethoscope and told me not to worry.

I also experienced fatigue. But back then, I did not know it was fatigue. I thought I was just tired. I am sure some of my siblings thought I was just lazy. The thing is, that was my ‘normal,' so it did not seem different. It did not seem like something I should report. That was my mistake.

Was my previous weight gain also a sign?

Recently, I was reading a post by a friend that mentioned weight gain being a sign of cardiomyopathy. I actually thought at first, 'Wow, I have never heard of that as a warning sign.' And then I thought, 'Oh my gosh, I had that.'

The thing is, I was 5'6" and had weighed about 98 pounds. I had been severely underweight, so when I went up to 113 pounds — which was still underweight — some people thought it looked good on me. Some people were happy I filled out a little and thought I looked healthier, rather than thinking I was in heart failure. I took a wonderful vacation during that time, during which we took many pictures. I have always thought my face filled out a bit back then. I guess my heart wall did as well.

Raising public awareness of cardiomyopathy

It is a bit amazing and very disconcerting that when these clear indicators of a potential cardiac condition were coupled with the pronouncement that my aunt had gotten an HCM diagnosis (in other words, there was also a family history), I was not referred for a heart screening. But it is not uncommon.

Now, I have a patient support network I have built with my sister that includes thousands of patients. It also includes the parents of many who died undiagnosed. For those children, no one decided to think, 'Cardiomyopathy.'