Thirty-Five Years to an HCM Diagnosis

By Sabrina Cuddy

At age 15, I was a student athlete on my high school fencing team, riding horses and taking ballet. I was short of breath during exercise, and my doctor diagnosed me with exercise-induced asthma, although the inhaler I was prescribed never helped and I stopped using it. I continued to be active.

At age 26, my first pregnancy was discovered at an urgent care visit for tachycardia. I was again diagnosed with exercise-induced asthma and again the inhaler never helped. Two years later, the first symptom of my second pregnancy was also tachycardia, and I was short of breath with any exercise. I was told I was just out of shape, although I continued to be active and was taking a prenatal exercise class. I was also told I had anxiety.

I continued being active, coaching kids’ soccer and dancing in community theater shows. I had an abnormal EKG at age 42 and was sent for a stress echo, which showed ventricular tachycardia that caused shortness of breath. The cardiologist said this was normal, and my primary care doctor told me I just needed more exercise – while I was dancing on stage five days a week.

During the next five years, many more symptoms of hypertrophic cardiomyopathy (HCM) appeared, including a murmur. I had another abnormal EKG that stated “possible infarct, possible left atrial enlargement,” so I was sent for an echo. The echo noted asymmetric left ventricular hypertrophy, relaxation abnormality of the left ventricle and systolic anterior motion of the mitral valve. I was still not diagnosed, and the same cardiologist who read this echo also sent me for an MRI three years later after I was hospitalized for possible takotsubo cardiomyopathy. When that didn’t go away, I was told I might have HCM, given a beta blocker and told to come back in a year.

A year later, I saw a new cardiologist because I couldn’t walk a quarter block without stopping to catch my breath. I was finally correctly diagnosed and sent to a Center of Excellence for HCM. Six months later, at age 50, I had myectomy surgery and mitral valve repair that gave me my life back, improving my symptoms so much that I could move again!

That’s 35 years from my first symptoms to a definitive diagnosis and correct treatment. And that’s why I’ve become active in trying to help others learn about HCM, before decades of their lives go by. 

For more information on this health topic, visit heart.org.

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