I met 68-year-old Frank Tummarello of Voorhees three years ago when he was very sick and needed a heart transplant. But his health issues started long before.
Ten years ago, Frank collapsed in a locker room after playing a round of golf in sunny Florida. Luckily, a doctor happened to be standing next to him and revived him.
Frank was quickly taken to the hospital, where doctors diagnosed him with atrial fibrillation or a-fib, a common heart rhythm problem that occurs when the top half of the heart quivers in a very fast and uncoordinated way. Not everyone with a-fib experiences symptoms, but Frank says he felt a pounding in his chest.
Upon returning to the Philadelphia area, Frank underwent a procedure to fix the problem. However, several years later, his health started to take a turn for the worse.
Daily activities for Frank became increasingly difficult; eventually he couldn’t walk more than a block or climb the stairs in his Shore house. His symptoms mimicked congestive heart failure: breathlessness, fatigue, and weakness. Frank’s doctors initially thought his heart was not functioning properly because of the a-fib and ongoing sleep apnea, though the apnea had never given him much trouble.
As it turned out, those were the least of his problems.
Three years ago, Frank was diagnosed with a rare heart condition called cardiac amyloidosis. His liver made too much protein, which was deposited into other tissues and organs, including the heart. The protein deposits make the heart stiff, which affects proper blood flow throughout the body.
Frank’s health was declining quickly, so his cardiologist sent him to my office.
By then he was very ill and needed a heart transplant. Not many centers will put cardiac amyloidosis patients on the transplant list because of the extra cardiac manifestations associated with the disease. Because amyloidosis is not limited to the heart, other symptoms may arise. Those include peripheral neuropathy, which is numbness or pain from nerve damage in the hands and feet, carpal tunnel syndrome, and kidney failure. However, in Frank’s case, our cardiac team agreed that the benefits of the transplant — a chance at a normal life — outweighed the risks.
Two months after Frank was placed on the transplant list, he received the call he and his family had been waiting for: A new heart was available.
He had the transplant surgery on Sept. 20, 2016. A heart transplant is not a cure for the cardiac amyloidosis, but his quality of his life has improved tremendously. He can now walk two miles without being breathless, he coaches his son’s basketball team instead of having to watch from the sidelines, and is back to work part time at his daughter’s marketing company.
In some populations, especially African Americans, cardiac amyloidosis is not as rare as has been believed. There are different forms of the condition, some of which are more treatable with medications and other therapies than Frank’s case, which required a transplant.
I believe more and more family medicine doctors and internists will see these types of cases and need to know what to look out for so that patients will know as early as possible what they are dealing with, and what their options might include.
Rene Alvarez, M.D., is vice chief of cardiology and director of the Heart Failure/Cardiac Transplantation Program at the Temple Heart and Vascular Institute, and professor of medicine at the Lewis Katz School of Medicine at Temple University.