It kills by inflaming your heart muscles and it is so rare, it’s tough to diagnose. Here’s the story of a woman who is one of only about 300 people ever to suffer from this heart disease and she lived to tell about it.
Brenda Kapp exercised regularly, ate well, and hardly ever got sick. But one day “I had started just short of breath and wheezing,” detailed Kapp.
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.
Maria Mountis, DO, a cardiologist at the Cleveland Clinic, said, “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 Kapp’s balloon pump started to fail.
Kapp detailed, “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.
“I just feel like I have this wonderful, wonderful blessing in life in front of me now,” said Kapp.
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 patient’s 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.
“Until you’re on the other side you don’t realize how important it is,” said Kapp.
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. Every ten minutes, a new name is added to the national organ waiting list, and on average 22 people die each day because there aren’t enough organs. One organ donor can save up to eight lives.