New Treatment for Rare Form of Heart Disease

St. Francis Hospital & Heart Center has expanded its highly recognized Congestive Heart Failure Program to include a designated multidisciplinary Cardiac Amyloidosis Program, specifically addressing ATTR amyloidosis, an under-recognized type of amyloidosis that affects the heart and nervous system.

Craig Bibbs, of Roosevelt, New York, knows first-hand how the program is crucial. The 59-year-old had been coping with neck pains, numbness in the legs, and chest rashes for years. “Eventually, I couldn’t walk,” said Craig. “My wife took me to St. Francis Hospital & Heart Center. I felt it was probably related to my heart, and we know their high reputation for heart care.”

The doctor who examined Bibbs confirmed he had heart failure and asked him to stay on for a series of tests, which confirmed it was ATTR amyloidosis. Ailia Rizvi, DO, Catholic Health Physician Partners cardiologist, was familiar with this rare form of heart failure and performed the appropriate workup that eventually led to his diagnosis. 

Testing was performed under the direction of Omar Khalique, MD, St. Francis Hospital & Heart Center Director of the Division of Cardiovascular Imaging. His team used cardiac MRI followed by a cardiac PYP scan. PYP stands for pyrophosphate and uses a radioactive form called tc99m-pyp, which is taken up in your body to detect the abnormal Transthyretin protein. Based on these innovative exams, cardiovascular imaging experts and cardiologists Sylvia Biso, MD, and Lu Chen, MD, were able to narrow the diagnosis to ATTR amyloidosis, which gave Craig a clear treatment path.

“We put Craig on an oral medication called Vyndamax and an injection every three months for his nerve issues,” said Dr. Rizvi.

Now, Craig is waking up to work out every day. “I feel a lot better. I can get up in the morning and do my resistance training, then drive to the stores to get my errands done. Going to St. Francis was definitely a game-changer for me.” 

ATTR Amyloidosis can be acquired or a hereditary disease. Craig has the hereditary form. After gene testing confirmed this, his daughter got tested.

“We’re monitoring Craig’s daughter,” said Rita Jermyn, MD, Director of the Center for Advanced Cardiac Therapeutics at St. Francis Hospital & Heart Center in Roslyn, NY. “Typically, symptoms won’t surface until one is in their ‘30s or ‘40s. It’s wait and see, but we have the treatment and screening protocols.” 

The Cardiac Amyloidosis Program is available at St. Francis Hospital & Heart Center in Roslyn, NY. Call 516-562-6426 for more information.