Dilated Cardiomyopathy and Heart Transplant: Angy-Mike’s Story

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Angy-Mike loves wrestling. The 16-year-old has participated in the sport for his school teams in York, Pa., since seventh grade. But as the school year got underway last fall, he began feeling exhausted and weak. One night, when nausea and vomiting added to his ever-worsening lack of energy, his alarmed parents, Jeanine and Pascal, took him to the local emergency room. What they discovered seemed nearly inconceivable: Angy-Mike was experiencing complete heart failure.

patient recovering from surgery Talent and competitive spirit had kept Angy-Mike pushing through the exhaustion. And it worked for a while. “Regardless of what was going on, he seemed fine,” says Pascal. “He wanted to make a name for himself in wrestling.” But Angy-Mike's symptoms were becoming overwhelming. Then one day while heading home from school on the bus, he felt like he was about to pass out. Not able to walk up the hill to his house, he needed a ride home.

At home, the teen napped for several hours and felt a little better. But then he started coughing up mucus with blood in it. At the emergency room, a chest X-ray showed Angy-Mike had a grossly abnormal heart enlargement and fluids in his lungs. “The doctor told me, ‘We can’t keep him here,’” says Pascal. The decision was made to transfer him to Children's Hospital of Philadelphia (CHOP).

Enlarged chambers of the heart

hospital patient smiling Tests at CHOP revealed Angy-Mike had dilated cardiomyopathy, a type of heart disease in which the heart’s chambers are enlarged because the heart muscle is weakened and cannot pump effectively.

Angy-Mike couldn’t believe the diagnosis. “It was weird,” he says. “You’d think that working out and eating right means you’re going to be healthy. And it made me mad! I couldn’t wrestle. I wanted to be state champ.”

For 10 days at CHOP, doctors tried to manage his condition with medications, but there was no improvement. When the cardiologists told Jeanine and Pascal what needed to happen next, “I was in shock and my wife started crying,” says Pascal.

Angy-Mike needed open-heart surgery to get a left ventricular assist device (LVAD), an implanted mechanical pump that helps move blood from the lower chambers of the heart to the rest of the body. The LVAD essentially takes over the heart’s work.

Jeanine and Pascal felt overwhelmed. They prayed. They consulted trusted advisors including their pastor and Jeanine’s sister Chantal, a nurse practitioner. It became clear that Angy-Mike needed the LVAD to survive, and Jonathan M. Chen, MD, Co-Director of CHOP’s Cardiac Center and Chief of the Division of Cardiothoracic Surgery, successfully performed the LVAD implantation surgery.

After the procedure, Angy-Mike “looked very different,” Pascal says of his son. “His face seemed sunken.” Angy-Mike’s recovery was slow, and he needed to adjust to life with the LVAD, a small machine that is implanted in the body but must be externally connected to a continuous power source.

In need of a new heart

“We were hoping this (the LVAD) would let his heart rest and heal,” says Pascal. “When they told us he needed a new heart, I just said, ‘What?!’”

For more than two months, the family lived at the Ronald McDonald House in Philadelphia, with Angy-Mike under stringent activity limitations.

On the morning of Nov. 8, while getting ready for a checkup at CHOP’s Heart Failure and Transplant Program, Angy-Mike had a premonition. “He said, ‘Dad, I have a feeling they’ll tell me today that they have a heart for me,’” Pascal recalls.

The checkup, however, was uneventful, and Angy-Mike headed to class at CHOP’s Hospital School Program, where certified teachers help patients learn and continue to hit academic milestones. That’s where Rachel White, BSN, RN, CCTC, a cardiac transplant coordinator, found Angy-Mike and Pascal to deliver the news: A heart was available.

“I called my wife, and she kept saying, ‘Oh my God!’” says Pascal. “I told her she had to come to CHOP because the surgery was happening today.”

‘This is really happening’

boy wearing suit sitting in chair at ceremony Angy-Mike was also stunned: “I thought, ‘I can’t believe this is really happening,’” he says.

The heart transplant took eight hours. Instead of the difficult recovery he experienced after the LVAD procedure, this recovery process went quickly and smoothly. The family was home five days before Christmas. For a few months, he remained on medication to prevent early infection in addition to his longer-term medications to prevent his immune system from rejecting the new organ. Now, he goes to follow-up visits with Kimberly Lin, MD, the Medical Director of Cardiomyopathy in the Heart Failure and Transplant Program.

Today, Angy-Mike is again working out, wrestling and going to school, all at the same level and intensity as before his heart problems began. “I hope I can inspire people that anything is possible,” he says.

“He’s doing amazing,” says Pascal, who can’t say enough words of praise for CHOP:

The whole team — the doctors, the social workers, everyone — was outstanding. Just outstanding.

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