Amyloidosis Treatment Gives Ricardo a New Life
When Ricardo rides his stationary bike he leaves the memory of heart failure further and further behind. After he was diagnosed with amyloidosis, specialists at Newark Beth Israel Medical Center were able to arrest the production of amyloid protein that destroyed his heart and perform a heart transplant.
Ricardo had felt his life waning for two years but doctors could not find the problem. “I used to walk a mile and a half to work but suddenly I was so exhausted that just taking a shower was a mission. None of the medications helped me,” he remembers.
Primary AL amyloidosis is a rare blood disorder that results in production of abnormal protein (amyloid) that is deposited as fibers on organs such as the heart, kidneys, nerves and intestines. Because the condition is uncommon - only about 3,000 American are diagnosed each year - most physicians have little experience diagnosing or treating the condition.
“In patients with unexplained heart failure, gastrointestinal symptoms or neuromuscular disorders, a diagnosis of amyloidosis should be considered,” said Indu Sabnani, MD, Hematologist/ Oncologist. There are many different kinds of amyloidosis which can be hereditary or acquired.
“When I met Ricardo his heart was functioning at 15 percent of its normal capacity,” said Mark J. Zucker, MD, JD, Director of the Heart Failure Treatment and Transplant Program. A biopsy was performed, the only definitive test for amyloidosis. “The walls of his heart were stiff from the deposit of starchy material,” explained Dr. Zucker.
The national Amyloidosis Foundation recognizes Newark Beth Israel Medical Center as experienced in diagnosing and treating this condition that requires a symphony of amyloid specialists in cardiology, hematology, gastroenterology, neurology, nephrology, pulmonology and pathology. “Until recently, AL amyloidosis was considered incurable,” said Dr. Sabnani. “Research studies in stem cell transplantation are showing good results and now offer hope to people with ‘stiff heart syndrome.’”
The team at Newark Beth Israel fully evaluated Mr. Negron’s disease among the many types of amyloidosis and planned specific treatment aimed at reducing the abnormal cells that produce the amyloid while managing the heart failure it caused.
The husband and father of three received a heart transplant only a month after being listed as a heart transplant candidate. Today, Ricardo is walking his wife to work early in the morning, riding up to 12 miles a day on his stationary bike and taking the stairs whenever he can. After he is fully recoverd from transplant surgery, the Newark Beth Israel specialists have recommended a stem cell transplant that could completely cure his disease.
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