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Hopkins patient marks 30-year anniversary of heart transplant

Phoenix man is among longest to survive with new organ

By Scott Dance, The Baltimore Sun

11:12 PM EDT, August 8, 2013

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If Baltimore County resident Orlando DeFelice hadn't had a heart transplant, doctors told his wife, Pam, he would have likely died within four days.

Even after the surgery, doctors told him he had 50/50 odds of dying within five years.

But that was three decades ago. DeFelice, the second patient at Johns Hopkins Hospital to receive a new heart since the procedure was modernized in the 1980s, on Tuesday marked the 30th anniversary of his life-saving surgery. The milestone makes him one of the longest-living heart transplant patients in history.

Records of longest-living recipients are not well kept, but an Ohio man lived 31 years after a single heart transplant before dying in 2009. Another man in England marked 30 years post-transplant last year. Several other patients at Hopkins are just a couple of years behind DeFelice.

DeFelice has endured his share of health challenges over that time — a kidney transplant and cancer surgery, both necessitated by a post-transplant drug regimen — but is otherwise healthy and living a full life. He said he hopes his story stresses the importance of organ donation, and honoring the "gift" he received.

"It's not a piece of cake where this is done and you don't have to worry about anything," DeFelice said. "But it's a blessing, and it gives you a new life. You can go out and do the things you were planning to do before the disease got you."

For DeFelice, that was at age 28. He and his wife, who met on a bowling team at what was then Towson State University, had been married just a few years when he was diagnosed with cardiomyopathy, his heart enlarged and unable to pump blood efficiently to his organs. For a year, he worked with doctors to treat the disease with medications while he felt sapped of energy and had difficulty breathing.

On the couple's fourth wedding anniversary, they got the news — the drugs were not effectively treating the disease, and DeFelice would need a heart transplant.

The procedure was still experimental at that time. While the first heart transplant occurred in 1967 in South Africa, early techniques were deemed ineffective — most patients died within a year. But with the advent of the drug cyclosporine, approved by the Food and Drug Administration to prevent rejection of transplanted organs, heart transplant numbers began to rise in the early 1980s.

In 1983, the year of DeFelice's surgery, Hopkins established a heart transplant practice. His was one of fewer than 200 performed in the U.S. that year.

At that time, about half of patients could be expected to live five to seven years or more, said Dr. Edward Kasper, DeFelice's cardiologist. But DeFelice said he didn't worry.

"I didn't really pay a lot of attention to that," DeFelice said. "So far, so good."

Instead, he focuses on taking care of himself — to honor his donor, he said. His heart came from the family of a 16-year-old girl in Florida. As he sat in the hospital awaiting the surgery, his family watched as the heart arrived by helicopter, carried inside in a cooler, Pam DeFelice recalled.

"It was a sobering moment, because a 16-year-old girl had died," she said. "We have done our very best to take care of it."

That hasn't been easy, the couple said. Any small infection or pain has to be carefully watched and reported back to DeFelice's doctors. With his immune system weakened by the same drugs that keep his body from rejecting his donated organs, complications can arise and compound.

"You trade one set of problems for another," said Diane Skojec, a nurse practitioner who helped care for DeFelice.

One side effect of the immunosuppressive drugs is a degradation of kidney function, and in 2010 a kidney transplant became necessary. Again, a donor came to DeFelice's rescue.

Pam DeFelice had shared her husband's story in a consumer product forum when a woman she didn't know asked her more about kidney donation. DeFelice thought little of it, she said, but was shocked when months later the woman said she had spoken with her doctor and was prepared to pursue a donation.

The process includes a battery of tests over months to ensure a successful transplant — the woman, who lives in a Southern state but did not want to be identified, passed all of them. She even agreed to travel to Maryland over Christmas when it became clear DeFelice would need the kidney sooner than expected.

"She just said she felt that spiritually, she was being called to do this," Pam DeFelice recalled.

Meanwhile, skin cancer is another side-effect of post-transplant treatment, and DeFelice had to have one ear canal removed.

But the 58-year-old has fared well through all of it, still working as an accountant and business analyst and keeping busy by playing golf, going on walks and riding his bike on the Torrey C. Brown Trail, formerly known as the Northern Central Railroad Trail, near his home in Phoenix.

His caregivers said he is a model for other transplant patients — and all patients — for following their advice, caring for his body and being respectful of the chance he has been given.

"It's been rewarding for us to see him do so well," said Kate Shagena, another nurse practitioner who treats DeFelice.

For DeFelice, celebrating the anniversary is an opportunity to emphasize the importance of organ donation. About a dozen years is the median length of survival post-transplant today, but that figure may be kept lower in part because transplants have become possible with sicker and older patients, Kasper said.

"I'm very grateful to my donors," DeFelice said. "It's truly the gift of life."

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