Cardiac amyloidosis, also called stiff heart, occurs when abnormal proteins build up and settle in body tissues. If these amyloid proteins travel to the heart, it can be deadly, and sometimes the only option for survival is a heart transplant.
Sixty-eight-year-old Frank Tummarello is back to enjoying quiet moments with his wife, following a ten-year battle with a deadly disease. Although he was initially diagnosed with atrial fibrillation, doctors suspected something more threatening: cardiac amyloidosis.
“I didn’t even know what it was,” Tummarello said.
Frank’s liver produced too much amyloid protein. It deposited in his heart, enlarging and thickening the muscle and preventing proper blood flow throughout his body. Soon, this previously active father and husband found it difficult to function.
Rene Alvarez, MD, Vice Chief, Section of Cardiology at Temple University Hospital explained, “It was very difficult for him to have any quality of life. He was in and out of the hospital, very short of breath, couldn’t walk 50 feet. So the prognosis of those patients once they develop heart failure from cardiac amyloid is very, very poor. The one-year survival is at best, 30 to 40 percent in those patients.”
The only option left for Frank was a transplant.
“I just wanted to get away, get rid of the old feeling. This heart would give me the opportunity to get rid of it,” Tummarello said.
The surgery took place in September of 2016. It made a dramatic difference.
Dr. Alvarez continued, “He knew he had a death sentence, that he was dying, and he got the gift of life. And the gift of life was a heart transplant.”
“The whole Temple team from Dr. Alvarez told me you’re gonna feel like a different person when this is all over and guess what; they’re absolutely right,” Tummarello said.
Symptoms of cardiac amyloidosis include fatigue, heart palpitations, shortness of breath and swelling of legs and ankles. About 4,500 people a year are diagnosed with the condition.