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It's rare. It comes on fast ... And it can kill you. Brenda Kapp exercised regularly, ate well, and hardly ever got sick. But one day…
Kapp says, "I had started just short of breath and wheezing."
She went to the doctor thinking it was asthma, not her heart. And certainly not giant cell myocarditis, a heart disease so rare doctors only see three to four cases a year. Several opinions later led Kapp to the Cleveland Clinic's ICU.
Dr. Maria Mountis, a cardiologist at Cleveland Clinic says, "We were starting to see its effect on her kidneys, on her liver. Everything was just not getting good blood flow."
They waited for six days until her balloon pump started to fail.
Kapp says, "I said to god you know what? This is my last day."
Right on cue, Kapp's prayer came true. She got her gift of life with a new heart.
Kapp says, "I just feel like I have this wonderful, wonderful blessing in life in front of me now."
Further testing of her old heart confirmed it was giant cell myocarditis. Doctors usually cannot diagnose it until after surgery because they need a piece of the patients heart tissue for the test, which was why Kapp received so many different opinions. Symptoms for giant cell may also include swelling of the ankles, chest pain, heart palpitations, and fatigue. Eventually, the only option is a heart transplant.
Kapp says, "Until you're on the other side you don't realize how important it is."
After full recovery, with help from the organization Lifebanc, Kapp met the family who donated her new heart. She says it has opened her eyes to organ donation.