Growing Up with Congenital Heart Disease
Joe was born with cardiomyopathy. At 19 his condition deteriorated and he was placed on an experimental trial with open heart surgical placement of an LVAD (left ventricular assist device). Now, years later Joe’s heart remains strong. Hear his story
Soon after birth Joey was diagnosed with complex heart disease, dilated cardiomyopathy with mitral valve regurgitation. 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. Though Joey lived with a strict diet and could never play contact sports or engage in strenuous exercise, he grew into his teenage years under the care of pediatric cardiologist Dr. Marie Gleason.
Joey's heart function continued to deteriorate and the following year, at the age of 18, the team at CHOP recommended that he transition to Penn Medicine's Cardiomyopathy team.
Joey's 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. Joey flat-lined, and after he was revived, was quickly sent to CHOP. The doctors at CHOP determined Joey's issue was his heart and transferred him over to Penn Medicine.
Joey 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
Joey's condition continued to deteriorate. In the beginning of September he collapsed at home and was rushed back to Penn. There, heart failure cardiologist Dr. Eduardo Rame gave him two treatment paths: a heart transplant or an experimental clinical trial at Penn that could potentially save his heart. The drug being studied combined with exercise gave patients a chance to have their heart recover instead of undergoing a transplant."
Even though Joey decided to enter the study, he still needed open-heart surgery to place a Left Ventricular Assist Device (LVAD). The LVAD is an implantable mechanical pump that helps pump blood from the heart to the rest of your body. It helped Joey's heart function while it healed. Joey 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."
Joey 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, 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, Joey'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, Joey 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."
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