It wasn’t a very cold day, John Kelly remembers. Though it was January, it was warm enough that he could play a round of golf outside.
“Then all of a sudden, my hands and feet turned white and purple,” he says. “It felt like they were frostbitten.”
Immediately, John knew something was wrong. He was eventually diagnosed with scleroderma, an autoimmune disease that leads to the hardening and constricting of the skin and/or internal organs.
His scleroderma had caused him to develop Raynaud’s disease: a condition in which narrowed blood vessels limit blood flow to the hands and feet. That explained his initial symptoms, but it wasn’t the end of his journey.
That’s because John’s scleroderma was also attacking the rest of his body. Over the next 20 years, it caused significant damage to his heart, and especially his lungs. It scarred and hardened his blood vessels and lung tissue to the point that he developed pulmonary fibrosis and hypertension.
“They can give you medication to slow the progression of scleroderma, but it isn’t necessarily effective,” John explains. “Even on the medication, my breathing kept getting worse. About two years ago, I became very limited in what I could do: I couldn’t go up the stairs or walk long distances. First, I was on oxygen at nighttime, and then, for a year and a half, I was on it 24/7.”
A Temple Referral Becomes a Lifeline
Finally, John’s specialist told him it was time: he needed a double lung transplant.
“I thought, ‘Boy, did this conversation just get elevated,’” John recalls. “I wasn’t expecting that.”'
John lives in Maryland, and he’d been seeing the same specialist at a world-renowned academic medical center for 20 years. But after an evaluation, that health system turned John down for a lung transplant, on the basis that he wasn’t a good candidate.
“Many hospitals don’t transplant patients with scleroderma because the condition can cause an increased risk of esophageal issues, which can lead to problems with the new lung,” explains Kartik V. Shenoy, MD, Professor of Thoracic Medicine and Surgery at the Lewis Katz School of Medicine at Temple University, who would eventually become John’s physician at Temple Health. “They also have a higher risk of vascular issues in their extremities and digits.”
But John’s specialist in Maryland had gone to medical school and completed his residency and fellowship at Temple. “He knew Temple specialized in lung transplant cases other hospitals couldn’t do,” John says. “He felt confident they would accept me.”
Once the Maryland health system had turned John down, his specialist put in a referral at Temple. “When I met with the Temple team, they told me, ‘We transplant these kinds of cases all the time,’” John says.
After further testing and evaluation, he got the call—his transplant had been approved.
The Expertise to Transplant Patients Other Hospitals Can’t
Temple is one of the few health systems with extensive experience performing lung transplants on people with scleroderma. In fact, we’ve developed a comprehensive protocol just for these patients.
“I’ve transplanted about 15 scleroderma patients, and treated many more,” Dr. Shenoy says. “In addition to the normal transplant preparation, we also discuss the impact the procedure will have on their esophagus. It’s a highly individualized, team approach involving our GI specialists and dietitians to determine the best plan for each particular patient.”
“I’ve worked with several scleroderma patients,” adds Roh Yanagida, MD, PhD, FACS, Associate Professor of Surgery at the Lewis Katz School of Medicine, Surgical Director of the Heart Transplant Program at Temple University Hospital, and Director of the ECMO Program at TUH, who performed John’s lung transplant.
“Many programs still won’t transplant these patients, but there is a growing amount of literature that reports people with scleroderma actually do well compared to other lung transplant patients,” Dr. Yanagida continues. “And Temple surgeons have the expertise to perform these transplants successfully.”
“Dr. Yanagida has the hands of God,” John says. “He did an incredible job—I was very impressed. My experience was amazing, and far exceeded my expectations.”
Living His “New Life” to the Fullest
John’s surgery was in February 2025, and he describes his recovery as “remarkable.” He was discharged from the hospital after two and a half weeks, and was doing laps around the unit—and even climbing stairs—before he left.
After six weeks, John was walking a mile and a half, and started working from home again. After three months, he had his GJ tube—which most scleroderma patients require post-transplant—removed, and got his care team’s approval to vacation in the Outer Banks.
“John has done very well,” Dr. Shenoy says. “He’s a great guy with a great family, and I’m really happy he’s getting to experience a new life.”
“A new life” is how John would describe it, too. He’ll continue to need GI surveillance, but he hasn’t needed any oxygen since day five of his recovery.
“When I was in the Outer Banks, I climbed the Wright Brothers National Memorial,” he says. “Before my transplant, there was no way I could have walked up that hill.”
The best news is that there’s a low risk of John’s scleroderma attacking his new lungs. Now, he’s free to focus on doing the things he loves—and how his life keeps improving post-surgery. “I’m just getting better and better,” he says.