Mike Marinelli was a healthy guy. A firefighter in South Jersey who was always first to join a softball game, Mike began noticing it was getting more and more difficult to catch his breath after a run across home plate.
“I didn’t understand what was going on,” says Mike. “I never had anything wrong with me, but one day, it all came to a head.”
In 1992, Mike was playing a game of softball and ran from first to home – then he passed out.
“Something was really wrong, and I started going to different doctors who all told me nothing was wrong, and that I just needed to get in better shape,” he recalls.
But when Mike lost his voice, an ENT specialist suggested there may be something wrong with his lungs.
“I went to a pulmonologist and learned my oxygen levels were at 50 percent,” says Mike. “He admitted me to the hospital right then and there.”
A lung biopsy conformed Mike had pulmonary hypertension, a rare disease marked by an increase of blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries. Symptoms include shortness of breath, dizziness, fainting and a decrease in exercise tolerance.
In the early 1990s there was only one cure for pulmonary hypertension – a lung transplant.
“My wife and I were like, ‘What do we do?’ I was only 33 years old, I’d been active my whole life, and now you are telling me I need new lungs?” he says. “It was a shock, but once the shock wore off, I did what I needed to do and was put on the transplant waiting list."
Two Transplants, Tough Road Ahead
The call came in July of 1993, and Mike became the youngest pulmonary hypertension patient to receive a lung transplant at the Hospital of the University of Pennsylvania. Mike received a single left lung.
But it would not be an easy road to recovery for Mike.
“I never really responded to the lung, and about 10 days after the transplant, it was evident things were not going well,” he says. Mike experienced graft failure, pneumonia and rejection – all the while his wife, Judy stayed by his side.
But he made it, and he began physical therapy to get stronger.
“When I got strong enough, I went back to work with an oxygen tank,” he says. “I was still using oxygen, which I didn’t like, but I got a shot at getting off of it for good.”
Sixteen months later in 1994, Mike learned he would need another lung transplant – to replace his original (native) lung, his right lung, which was failing.
“It was my only chance at getting off of the oxygen tank, so I had to do it,” he says.
He got the call for his second lung transplant that Thanksgiving. Transplanted again at HUP, this experience was much different.
“After the second transplant, things were moving along pretty well,” he says “I have had a few issues along the way, but I was able to get off oxygen and get back to work.”
Today, 20 years post-transplant, Mike enjoys his family and is able to reflect on everything he’s been through.
He offers this advice to others who have had transplant, or who are on the waiting list for a transplant:
“One of the best things is to not let it rule your life. You don't have to think about it every hour of every day. Don’t give up the everyday activities in your life out of fear. Lean on a strong support system that surrounds you, and don’t lose hope.”