“Getting a transplant has changed my life completely. I am very grateful.”
At first, Marcela Urrego’s doctors didn’t know what to think when she developed shortness of breath and severely swollen hands and ankles. Was it a thyroid problem? A liver condition? Continued investigation finally produced a startling diagnosis in 2019: The 42-year-old mother and Boonton resident had scleroderma, a rare type of autoimmune disease in which the body’s immune system overreacts and attacks healthy tissues.
“I had thought it was just a skin problem,” says Marcela, who has a 22-year-old son and a large extended family from Colombia. “When I started reading about scleroderma, I learned what a bad disease it is.”
Scleroderma causes abnormal tightening of the skin, which can affect internal organs. In the lungs, it can trigger inflammation and scarring, called pulmonary fibrosis, which makes breathing difficult.
Marcela’s condition seriously worsened, and in March 2021, she was put on supplemental oxygen 24 hours a day, an anxiety-provoking situation. She required a wheelchair to get around. “I was in bed almost all the time,” she says. “I couldn’t take a shower by myself; somebody had to help me.”
It was clear she needed highly specialized care, and Marcela’s doctors referred her to the Advanced Lung Disease and Transplant Program at Newark Beth Israel Medical Center (NBI), a Center of Excellence for Lung Transplantation and New Jersey’s only lung transplant center.
Hoping for a Transplant
The NBI team determined that Marcela also had severe pulmonary artery hypertension secondary to the scleroderma and that she was a good candidate for a lung transplant. “She was very likely to benefit from the procedure by having a better quality of life and living longer,” says Joshua Lee, MD, Lung Transplant Medical Director. “Her goal was to be able to spend more time with her child and her parents.”
But Marcela’s transplant team contended with a number of challenges. “Her scleroderma had affected her esophagus,” says Dr. Lee. “That meant she had a higher risk of aspirating [breathing in] food. After a lung transplant, aspiration could increase the risk of developing a graft injury and chronic rejection.” Such an injury could cause the transplant to fail.
Use of a feeding tube for a period of time as Marcela’s body adjusted to the transplant promised to reduce the risk. “This is a big challenge for many patients, but she didn’t even hesitate,” says Dr. Lee. “She was willing to sacrifice in order to get through the transplant.”
Yet there was another serious concern: In November 2021, Marcela contracted COVID-19 and was hospitalized. Discharged after 10 days, she developed a fever and returned to the hospital, where for five days she battled a type of severe pneumonia common in people with scleroderma.
“COVID didn’t have as dramatic an effect on her lung function as we’ve seen in some patients,” says Dr. Lee. “But we had to make sure that she was able to overcome the infection before even thinking about a transplant.”
Marcela’s transplant continued to be deferred as she fended off two more bouts of COVID in the months that followed.
She was finally placed on the transplant list in September 2022—and the wait for a donor organ began.
A Life-Changing Surgery
The call that would change everything came on February 14, 2023—Valentine’s Day. A fresh set of lungs was available, and Marcela’s family rushed her to the hospital. “I was happy but scared,” she says.
While her son and parents kept vigil in the waiting room, Marcela had bilateral lung transplant surgery performed by Jesus Gomez-Abraham, MD, Lung Transplant Surgical Director.
It was one of the first cases in New Jersey of ex vivo lung perfusion (EVLP), a highly specialized lung bioengineering organ preservation system. NBI is among several programs in the U.S. that participated in EVLP research and FDA-approved clinical trials—important milestones for the only lung transplant center in New Jersey.
When Marcela regained consciousness, she looked out the window from her hospital bed and thought, “Thank you, Lord.” Her son remained at her bedside during her month-long hospital stay.
Marcela slowly regained strength. She proceeded with having a feeding tube after the surgery but before long was able to start eating again. No longer tethered to an oxygen tank, she breathes freely.
Immunosuppressive medications that Marcela takes to prevent her body from rejecting her new lungs have calmed her overactive immune system. In April, she even passed a high-altitude simulation test at Cooperman Barnabas Medical Center, clearing her for travel to visit relatives in Colombia.
“She can now eat, drive, shop and do activities that she couldn’t have dreamt of doing before her transplant,” says Dr. Gomez-Abraham. “She is doing very well and enjoying the gift of life.”
“The first year after transplant is crucial,” says Dr. Lee. “If patients can get through it without major issues, their survival prospects and prognosis become better. And Marcela has done that.”
He credits Marcela’s success to the many NBI people who are involved in the transplant process, from procurement of lifesaving organs to post-transplant rehabilitation.
“It’s really a team effort that includes our nurse coordinators, nurse practitioners, pharmacists, social workers, transplant surgeons, anesthesiologists, therapists, nurses and many others,” says Dr. Lee. “We work collaboratively to make sure our patients have the best possible outcomes.”
“We provide not just the transplant, like EVLP with lung bioengineering, but also a conglomeration of multispecialty and multidisciplinary services that are needed in conjunction with transplants—an approach that makes us successful,” says Dr. Gomez-Abraham.
“Getting a transplant has changed my life completely,” says Marcela. “I am very grateful.”
Learn more about lung transplants at RWJBarnabas Health.