After a rare lung-heart transplant, Camille Frede has become a competitive cyclist
When Camille Frede was 4 years old, doctors said she had only three years to live.
She had been diagnosed with pulmonary hypertension, a lung disease in which the blood vessels that service the lungs get blocked. Her parents refused to accept that grim future, flying her from their home in Grand Rapids, Michigan, to hospitals in New York and Boston for treatment.
She beat the original prognosis, but it was like having to breathe through a straw. She was in and out of hospitals for years and sometimes was out of breath after tasks as simple as putting on her shoes.
In the fall of 2017, her health, always precarious, deteriorated. She could not walk more than 15 feet without losing her breath. Doctors put her on the transplant list, and in February 2018, she was admitted to the hospital in Boston. She was put on an extracorporeal membrane oxygenation (ECMO) machine, which pumps blood and oxygen for patients when their heart and lungs can no longer do so adequately.
Her heart was healthy, but because so many connections were needed between the heart and lungs, doctors decided to transplant the heart as well.
Lung-heart transplants are extremely rare. The hospital where Frede's operation was performed, Brigham and Women's Hospital in Boston, had not performed such a surgery in more than two decades. There were only 32 lung-heart transplants in the U.S. last year. (By comparison, there were 21,167 kidney transplants and 3,408 heart transplants, according to the United Network for Organ Sharing.)
Some candidates wait years for their transplant. According to government statistics, 20 people die every day waiting for a transplant. But Frede got lucky: A donor was identified, and she had the surgery on March 25, 2018.
After the operation, doctors left her chest open for several days because it was, for lack of a better way of putting it, wet in there and had to dry out. Once her new heart and lungs dried out, doctors sewed her shut.
And then her new life opened before her.
Frede's disease had forced her to be inactive for years, and her muscles had atrophied.
So she started slowly. She took the stairs instead of the elevator -- an accomplishment because she had not had that choice in years. She joined a Pilates class. She went on bike rides with her doctor, Aaron Waxman, and exercise physiologist, Julie Tracy.
Last November, Frede, now 29, started running for the first time in her life. She lasted two minutes before she had to stop. But by the spring she could run a 5K. "I'd have to push myself up a flight of stairs and take a break at the top. Now I can just go," she said. "It's just incredible joy."
One of the requirements of her surgery was that she live in Boston for a year after the transplant, because doctors wanted her to be near them if anything went wrong. After the year, a crucial benchmark for transplant recipients, she moved back to Michigan to live with her parents.
Frede's recovery has been full of milestones -- among them, the first time she listened to her new heart on a stethoscope, being released from the hospital 10 days after the surgery, and riding a bike with her parents. She comes from a family of cyclists, and for too long, pulmonary hypertension robbed her of enjoying family rides. As a young girl, she turned blue on those rides from lack of oxygen. Now she turns pink from exertion.
"It's like seeing a toddler ride without training wheels," says her mom, Nancy Frede. "Even the neighbors come out and say, 'Holy cow, you two are riding together.'"
On one of the first rides with her parents, Frede pedaled up Johnson Hill, a particularly difficult ascent. She barely made it to the top. "I was huffing and puffing," she says. "I was like, I don't know if I can do this, blah blah blah."
By mid-July, she rode up that hill five times in a row with no problem. "She's getting stronger and stronger. She still can't beat me," Nancy Frede says. "She's getting there, though. I can't wait until when I can't keep up with her. I don't think it's going to be too far off."
This week, Frede flew to England to compete in the 10K and 30K cycling events at the World Transplant Games that begin on Saturday. She now trains on her bicycle six days a week. On the seventh, her "rest day," she runs on the beach. If she's supposed to be under any physical limitations, she doesn't know of them ... and she's not about to ask. "I don't know how else to be," she says. "I like to push it."
What's the next milestone? Frede loves that question, in large part because she can answer it any way she wants. The freedom the transplant has given her is intoxicating. She's looking for ways to test herself, the more audacious, the better.
"Before [the transplant], you're like, 'I don't want to push it because I don't want to end up in a hospital.' Now it's like, 'I can do this,'" she says.
After Frede gets back from the World Transplant Games, she'll start classes toward earning a master's degree to become a physician assistant while still working as a nurse. She wants to learn to swim, and she wants to travel. She wants to give inspirational speeches, be active in the organ donation community and live a life worthy of the gift she was given by the still-anonymous donor.
"Impossible can become real," she says. "There's so many people out there that want to tell you, 'You can't do this, you can't do that.' If you stop to ask them why, they'll probably give you some BS answer. 'Oh, well, you don't want to put that effort in.' Well ... what if I want to?"