After six years of symptoms, a hypertrophic cardiomyopathy diagnosis

For years Michael Rizzo didn't feel quite right, but he could never figure out why. Over time he felt worse and worse, getting especially exhausted during even moderate exercise.

"I just blamed it on my asthma and the severe cold weather," Rizzo said.

At one point he thought he might have a heart problem. Both he and his doctor heard a murmur, but tests proved inconclusive. Further tests months later were inconclusive as well.

Finally, after six years of wondering, his mystery was solved — but a dramatic new health journey was just beginning.

While working as a paramedic for a health care system in New Jersey, he arrived at the hospital one day exhausted and drenched in sweat. He thought he might have had a heart attack and, a day later, met with cardiologist Dr. Robert Saporito.

Saporito pinpointed a condition called hypertrophic cardiomyopathy, or HCM, a thickening of the walls of the heart chamber typically caused by genetic factors, resulting in decreased heart function.

"It was like, oh my goodness, finally! It's not in my head," Rizzo said.

He researched HCM online and connected with Lisa Salberg, founder and CEO of the Hypertrophic Cardiomyopathy Association. Weeks later, he underwent a successful surgery — a septal myectomy and mitral valve repair. Just five months later, he was back at work.

But soon after, he began having chest pain. After more tests, the shocking news came: "You're going to need a transplant," Rizzo recalled.

With the help of medication, Rizzo worked for about another three years as he waited for his new heart. Finally the day came, and in 2017 he had his transplant.

"Going through two open-heart surgeries is not pleasant, but it's amazing how quickly your mind just forgets about it," said Rizzo, now 56.

Through it all, he's learned many lessons about advocating for yourself. At a recent party to celebrate the fifth anniversary of his transplant, Rizzo spoke to his guests, including Salberg, about resilience and thanked his "donor angel." He said his story provides new insight into the patient's perspective.

"You know in your gut when something's not right, and you're not feeling well, and to just push things a little further," Rizzo said.

The Hypertrophic Cardiomyopathy Association participates in the American Heart Association’s Hypertrophic Cardiomyopathy initiative to improve HCM awareness and care.