Joe Belletiere | A Whole New Life

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At just 23 years old, Joe Belletiere may not look like your classic heart disease patient. But born with a complex heart condition, cardiomyopathy with mitral valve regurgitation, Joe has lived his entire life under the constraints of cardiac disease.

Born with a broken heart

After spending three months under the expert care of the team at The Children’s Hospital of Philadelphia (CHOP) as a newborn, he was able to go home. But even with CHOP by his side as he grew into childhood, Joe lived with a strict diet and was advised that he could never play contact sports or engage in strenuous exercise. “I was always aware of my challenges—if I did not live by these strict rules, it could be problematic,” Joe says.

Joseph Belletiere

His situation became problematic in the summer of 2009, when the then 19 year old began complaining of shortness of breath, chest pain and palpitations. His mother took him to a local hospital, where they began mistakenly treating him for a viral infection. Joe flat-lined, and after he was revived, was quickly transferred to CHOP. His lungs almost filled with fluid, the doctors at CHOP determined Joe’s issue was his heart and transferred him to Dr. Joyce Wald and the expert cardiology team at Penn.

Joe spent two weeks at Penn, and was released on the condition that he follow a strict diet and avoid strenuous exercise. “I knew that I had to watch myself because my heart was very fragile, and everything they were doing was to preserve my heart’s usage,” he explains.

Help for a failing heart

Joe’s condition began to deteriorate. In the beginning of September he collapsed at home and was rushed back to Penn. There, Dr. Eduardo Rame gave him two treatment paths: a heart transplant or an experimental drug trial at Penn that could potentially save his heart.  The drug being studied combined with exercise gave patients a chance to have their heart recovered instead of a transplant.

Even though Joe decided to enter the study, he still needed open-heart surgery. He was given an LVAD (left ventricular assist device), an implantable mechanical pump that helps pump blood from the heart to the rest of your body. Joe admits that his LVAD was less than ideal—it included two batteries, an assisting controller and a driveline that went into his stomach. The batteries lasted 8-12 hours on average, and at night, the device was plugged in. “Even though I knew that it was going to help me, I knew that it was going to be strenuous,” he says. “I knew that this device was going to be part of me. I had to learn the ins and outs of it.”

Joe began the drug trial, and combined with the exercise to strengthen his heart and the help of the LVAD, his health began to improve. In March 2011, the LVAD was removed, and a follow-up visit to Penn one month later, showed his heart was working well on its own. “For me, those three things—the LVAD, the study drug and the exercise—changed my life,” he says. “The exercise has not only helped strengthen my heart, it has also given me immense discipline and the ability to feel stronger and better about myself in order to stay on course with the goals we set.”

A stronger heart, a better life

Two years later, Joe’s heart remains strong, and he can now approach life like a regular 20 year old. “I’m able to do everything that I always wanted to do,” he says. “I’m able to run, walk, play paintball and contact sports without getting out of breath. In essence, it’s a whole new me.”

Looking back, Joe notes: “Without the study drug, without the careful planning, execution, and amazing doctors, nurses and staff at Penn, I would not have been able to achieve everything I wanted to achieve,” he says. “For me, this was not just a victory for my heart. This was a victory for everyone involved.”

Hear Joe tell his amazing story in his own words.