As a former figure skater, Terry Perrotta had always been active and healthy, so she became concerned when at the age of 44, she felt completely out of breath merely from walking up the stairs. Her doctor blamed it on being overweight, but losing weight didn’t help.
Two years later, in 2006, Perrotta, a divorced mother of two teenagers who lives in Rhode Island, saw a pulmonologist, who diagnosed her with pulmonary hypertension, which causes narrowing in the pulmonary veins and swelling of the lungs.
Over the next few years, her condition deteriorated. She needed oxygen devices to help her push enough oxygen into her system; she endured medications, which caused painful side effects, and she had heart surgery because her heart was weakening from the lack of oxygen.
“It got to the point where I couldn’t cook, go to the market, couldn’t even have a conversation without getting out of breath,” Perrotta said.
On a whim in 2012, Perrotta decided to see another specialist, who almost immediately diagnosed her with a rare form of pulmonary hypertension called PVOD (pulmonary veno-occlusive disease). He told her she needed to get on an active lung transplant list immediately, or else she would die.
She made an appointment to meet the transplant surgeons at the Cleveland Clinic, a center known for complicated lung transplants—she would need a double. About 50 centers in the country perform lung transplants, which became more common in the mid 1980s.
Though the surgical techniques have been perfected and most people survive the operation, there’s a 54 percent five-year survival rate.
“We have not perfected the management,” said Dr. Marie Budev, the medical director of Cleveland Clinic’s lung transplant program. The key issue is that lungs are bombarded with foreign matter, which excites the immune system. But patients take immunosuppressant drugs to prevent them from rejecting the organ.
“Patients often die of complications that lead to organ rejection,” Budev said.
Perrotta’s ex-husband, John, drove her to Cleveland (she was too sick to fly) to meet with Budev and get on the transplant list, but upon their return to Rhode Island, Perrotta took a turn for the worse.
“I woke up and couldn’t breathe and told John to call 911,” she said.
That’s about the last thing she remembered until after she woke up—back at the Cleveland Clinic, with a new set of lungs.
How she got to the Cleveland Clinic and the number of times she cheated death were stories she would hear as she was recovering. At the hospital in Rhode Island, she had slipped into a coma. Budev sent a transport team to retrieve her, but because her oxygen levels were so low, they couldn’t stabilize her enough to fly, so the team flew home without her.
“My children were devastated because that was my last hope,” she said. But her story has many last hopes. She was put on a form of life support called ECMO, which works like a cardiac and respiratory form of bypass, and would allow her organs to rest and recover. She was given a 2 percent chance of surviving the surgery to connect her to the machine, but she made it through.
“Terry is a dedicated, determined and stubborn person, with a will to live like no one I’ve ever seen,” said her best friend Brenda Rappoport.
Budev sent another plane, and the team transported her with the ECMO to Cleveland. By the time she arrived, the ECMO site was bleeding profusely and she needed surgery to repair it.
They told her ex-husband that she probably wasn’t going to make it. “They said I was the sickest person in the ICU and would need a miracle,” Perrotta said. She got one. On the seventh night she was in the hospital, with her body weakening daily, her family got the call. The hospital had lungs — and they were a match. The surgery was six-hours long, but it was a success.
Though the doctors predicted her recovery would take a month, she was out of the ICU in five days.
“She was young, she was viable, she was extremely healthy from every other standpoint,” Budev said, explaining why they proceeded with the surgery despite the risks. That vitality proved critical to her recovery.
'I wouldn't have made it without him'
The lack of oxygen to her body made her muscles incredibly weak, and it took a while for her to walk again. But within two months, she was back in Rhode Island, with her new lungs, a recovering heart, and the ability to breathe the fresh air again.
Her ex-husband, who was with her every step of the way, moved back home.
“Let’s just say he redeemed himself," Perrotta said. "I wouldn’t have made it without him." As to the scary success rates of lung transplants, she says, “I don’t think about it. I feel great, and that’s all I focus on.”
Her husband, a comedian, is hosting a benefit on May 23 in Rhode Island, to help cover her medical costs. Click for more information.
Laurie Tarkan is an award-winning health journalist whose work appears in the New York Times, among other national magazines and websites. She blogs about the Affordable Care Act for the WellBeeFile. Follow her on Twitter and Facebook.