Brenda Kapp was an ideal patient. She ate right, exercised daily and was a non-smoker. So when she found herself in the ICU in September 2014 with a doctor telling her that she was in need of a heart transplant, she was quite surprised.

“I had no idea that I was that sick,” she recalls. “The doctor said, ‘You’re dying right here in front of me.’”

Early symptoms

It all started a couple of weeks earlier when Kapp began to develop shortness of breath and wheezing. She went to see her doctor in her hometown thinking she had asthma. Instead doctors ran tests on her heart. Weeks later, she was in congestive heart failure.

Kapp met with Maria Moutis, D.O., of Cleveland Clinic’s Heart and Vascular Institute. “On exam, there was something that wasn’t right,” offers Dr. Mountis. “It was her heart. This was not a symptom of asthma; this was not a lung issue. I admitted her that same day.”

'“If you sense something isn’t right, even if you’re ‘healthy’ don’t ignore that inner voice.”'

Dr. Moutis, suspected that Kapp may have a rare and deadly disease, Idiopathic Giant Cell Myocarditis, which results in rapid deterioration of the heart. It is so rare that only a few hundred cases have ever been documented. Dr. Mountis made plans for a heart transplant.

A downward turn

By the middle of the next week, Kapp’s temporary fix, a balloon pump, began to fail and doctors made plans for her to receive a left ventricular assist device (LVAD).

“I said, ‘This is my last day. I don’t want an LVAD; I want to have a heart and I want to have it before Friday morning,’” Kapp says. “And, Thursday night, my heart came.”

Kapp’s heart had belonged to a woman who lived in North Carolina, who had lived with cerebral palsy before passing away at the age of 48. Kapp eventually connected with her donor’s family, via Lifebanc, and drove to Boone, NC to meet them.

Bonded by new blood

The two families have since become good friends and Kapp said that after they met her donor’s family was able to find peace with their loved one’s death. Kapp wants others to learn from her story.

“You really have to be an advocate for yourself,” she declares. “If you sense something isn’t right, even if you’re ‘healthy’ don’t ignore that inner voice.”