Age at Diagnosis: 12
Age Today: 55
It was 1973. I was in 6th grade, and my school was testing EKG machines. When it was my turn, something wasn’t right—they kept re-doing my test. The school nurse called my parents. I went to the doctor and was diagnosed with HCM
(then called ISSH).
My aunt had already been diagnosed with this “new” disease. She was among the first 300 HCM patients treated at the National Institutes of Health (NIH)
. So that’s where my parents took me. But in those days, the doctors said there was nothing to do—they would just regularly monitor me.
Though we didn’t realize it at the time, HCM really ran in my family. Around 1975, my father had a heart attack and was diagnosed. Two of my brothers, my grandfather, and one of my sisters have since passed away from HCM. In the ‘70s, no one tested family members—experts didn’t realize it mattered. (Ironically, the NIH testing my aunt and I underwent later helped determine HCM’s genetic connection
.) Thanks to today’s medical advances, my niece, one sister, two cousins and I are all being managed for our HCM and living normal lives.
It took a while to get here, though. My symptoms got worse as I got older, and with HCM research still evolving and treatments being fine-tuned, I was unsuccessfully put on every drug before enduring a pacemaker implantation and subsequent removal (the technology was so new, doctors accidentally installed my first one backward, and it kept electrically shocking me).
Here Comes The Sun
Then came Dr. Marty Maron at Tufts Medical Center
. That was my turning point. 2006. I had been feeling sicker and sicker—short of breath, exhausted, like a wet noodle—which my New Jersey cardiologist said was just part of the disease. I didn’t buy that. I went online, found a support forum, and there, saw Dr. Maron’s name. I live hours from Boston, but—desperate to feel better—I drove up to see him.
Dr. Maron put me on Lasix
—an experimental drug at the time—most HCM patients didn’t take “water pills
,” but he was convinced it would work for me. And it did. Suddenly, I was living a normal life and doing really well. It was like night and day. But within 12-18 months, I wasn’t feeling so grand. In 2008, he had me start taking another experimental drug he believed would help me feel better. He used to call me his “challenge patient”—I couldn’t always tolerate the usual drugs. I would pass out because my blood pressure would get ridiculously low.
He then recommended implanting a defibrillator and a pacemaker. I was very resistant, but he assured me it was the right move. We went ahead with the surgery. Dr. Maron carefully monitored me and adjusted my meds, and today, I have a quality of life I haven’t had since childhood.
Despite my ups and downs with HCM, I never thought I was going to die because of it. I have tremendous faith, I think positive, and I’m living proof that with the right care, a patient with HCM can enjoy a long, happy life.