Only 11 Americans are known to have received a 3rd double-lung transplant; this woman is preparing for the rare surgery
After her second double-lung transplant in 2012, Cassie Stanley was able to travel to Miami, Mexico and Las Vegas, root for her beloved Chicago Cubs at Wrigley Field, work as a nanny and land a job as a paraprofessional at her local elementary school.
But then, about a year ago, when Stanley and her boyfriend were walking to the beach during a Florida vacation, she noticed something odd.
"Wow," Stanley said. "I'm kind of out of breath."
Her lungs were once again starting to fail, and this time, Stanley, who has the lung-clogging genetic disorder cystic fibrosis, was in uncharted territory. Only 11 Americans received a third double-lung transplant from 1995 through November 2018, according to the United Network for Organ Sharing (UNOS), and Stanley's doctor at Loyola University Medical Center referred her out of state to Duke University, which has performed two of the rare surgeries.
Now Stanley, 34, of Elburn, Ill., her mother, Rhonda May, and her dog, a Yorkie-Maltese named Murphy, are in North Carolina, where Stanley is working out with Duke physical therapists five days a week to build up her strength for a life-saving third transplant.
"It's extremely scary," Stanley said.
"My first and second transplants, I was very, very sick going into them, and this time, I'm a lot more healthy, so I can actually think about it, and I can actually freak out about it. They say the third time is a lot more risky—there's going to be a lot of scar tissue, there's going to be more bleeding, and the surgery is just very rare."
Still, Stanley is keeping her spirits up, bonding with two other third-lung-transplant patients, one of whom made "Third Time's A Charm" T-shirts for the trio. She's walking for 30 minutes at a time during physical therapy—up from just five minutes—toting her portable oxygen tank as she goes.
"She's a pretty amazing person," said Dr. John Reynolds, medical director of the Duke Lung Transplant Program. "This is a lot to take on, to go at this a third time, but she has a love for life, and she's driven. And we are fully confident she'll do everything we ask her to do, and we are hopeful we can get her a good outcome."
Duke doctors believe that it's important to build your strength before a lung transplant, so Stanley is also working out on a stationary bike and doing core exercises.
"This is the most I've worked out in my life," she said with a laugh.
Among the risks of a third transplant: Patients may have scars from previous operations that can make it more difficult to remove the old lungs, according to Reynolds. That can prolong surgery and lead to more bleeding, he said. Damage to the kidneys from medications used to support previous transplants combined with the rigors of a complex surgery can lead to kidney failure. The patient would then require dialysis, in which a machine filters the blood to remove harmful waste.
And Stanley has chronic lung allograft dysfunction (CLAD), with scarring of the airways that doctors can't reverse, although they may be able to slow it down. Without a third transplant, Reynolds said, she would die.
Some transplant candidates are allowed to get third lung transplants—despite a shortage of donor organs—because of the way lungs are allocated in the U.S. Transplant list rankings take into account factors such as how sick a patient is and how much she would benefit from a transplant, according to the UNOS website.
How many transplants a patient has had is not factored in, although previous transplants may affect variables that are considered in calculating the lung allocation score, Reynolds said.
Stanley's current lungs lasted seven years, and she's young, so Reynolds says her doctors are hoping for a similar outcome or even a better one. Fourth lung transplants have been attempted in Europe, Reynolds said, and he believes the field is heading in that direction.
The immediate plan is for Stanley to receive a transplant sometime in the next few months—and perhaps as early as June, depending on donor organ availability. In the meantime, she's enjoying outings with her boyfriend, who lives in Chicago but tries to visit every other weekend.
Friends from her street in Elburn raised over $5,000 to help Stanley with the costs of treatment and temporary relocation to North Carolina, her mother said. And a GoFundMe page has raised over $27,000.
"I've never been so grateful in my life," Stanley said.
She's also drawing strength from new friends in North Carolina, both her fellow patients and a former patient who returned recently for a checkup. The former patient, a young woman who was on a Jet Ski not long after her third lung transplant last year, is now back at work and planning her wedding.
"I just kind of hope that I'll be like that one day," Stanley said. "She was in this position, too, and now she's home and doing really well."
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