Lung Transplant Patient Story: Meet John Sullivan
It was 1981. John Sullivan, 35 years old, had just moved to Ohio. He was happily busy as a traveling salesman, husband, and father of two young kids.
During a routine physical, he was found to be in great shape, except for one small problem. His doctor had discovered that John had emphysema.
Although he smoked, and had been coughing some, John didn’t fit the profile of a typical emphysema patient. His doctor sent him to a pulmonologist to find out why.
The diagnosis? John had alpha one antitrypsin deficiency, a rare disease that produces a deficiency in the alpha one protein that protects lungs from the attack of white blood cells.
In other words, John’s lungs were slowly being destroyed by the simplest of pollutants, including the common cold. The pulmonologist told him, “You’re not going to die in two years, but you’re not going to live a normal life, either.”
Eight years later, in 1989, John was on oxygen full time. He was still working, but tired easily. When his doctor at Ohio State suggested he consider a lung transplant, John laughed nervously.
“Lung transplant. I didn’t even know there was such a thing,” he says.
The first lung transplant had just been performed in 1981 at Stanford so it was a relatively new procedure.
The Path to UPMC
“I could have gone to Stanford or Toronto or St. Louis,” says John. “I went to Pittsburgh for an evaluation.” His UPMC surgeon told him, “If we do this and it’s successful, you’ll have a chance at a decent life. If it doesn’t work, that’s it.”
John didn’t think twice; he asked to be put on the lung transplant waiting list.
At that time, every lung transplant patient received a double lung heart transplant. Surgeons didn’t know yet how to perform just a single or double lung transplant.
“I was lucky,” John says. “I had to wait 14 months. In that time period, they learned how to do a double and single lung transplant.”
On May 1, 1991, John Sullivan had his first lung transplant at UPMC Presbyterian. He was 44 years old, and received a single right lung.
He spent a day and a half in the Cardiothoracic Intensive Care Unit (CTICU), then moved to a step-down unit.
John remained in the hospital for five weeks, gaining strength quickly. His prime motivation was to attend his daughter’s high school graduation at the end of the fifth week. Happily, John made it.
For six months, life was good.
“I could breathe. I was fine,” he says.
Then, a major setback came in the form of pancreatitis. The hospital in Michigan, where he was living at the time, didn’t have a treatment plan.
John came back to UPMC, where doctors determined that the pancreatitis was being caused by the immunosuppressants. “It was go off the suppressants or die,” he says.
Three weeks later, John went home. The pancreatitis was no longer an issue, but his lung was rejecting.
For three years, John huffed and puffed at about 50 percent of his lung capacity. Then he got a fungus in his lungs called aspergillis.
“I was back in the hospital with pneumonia. They told my wife four times that I was not going to make it. They never told me, but they told her,” he says.
John was on a ventilator in the ICU for three months. After that, he went back to Michigan to wait for another lung transplant.
In 1997, John was admitted to UPMC Presbyterian and put on a ventilator. His kidneys began to fail, and he lost his status as a transplant candidate.
Then his UPMC surgeon intervened, and promised to get John back on the list if his kidneys stabilized, which they did. Shortly after, a double lung became available.
After the complicated double-lung procedure, John came out of surgery in a coma. Although he was 5’ 10”, he weighed just 106 lbs.
When John came out of the coma, he was unable to walk.
Eventually, after physical therapy and lots of determination, John was on his feet again. Despite setbacks of two broken hips due to falls, John was out playing golf one year later.
In 2000, John had a kidney transplant, ending his need for dialysis.
After surviving so much, John is very appreciative of the transplant team at UPMC.
“The after-care is so important. And the nurses make the difference” he says. “The nurses in the CTICU and step-down unit are hands-on.
“I recommend UPMC because they know how to take care of lungs. I think it’s the best care in the world. It was for me.”
Although his loving wife died of cancer four years ago, today, John Sullivan is 63 and feels “extremely lucky.” He is living in Pittsburgh, and exercises five to six days a week.
Every Monday, John returns to UPMC Presbyterian, where he speaks with transplant candidates and their spouses, tells them his story, and answers questions. He is a Catholic Eucharistic Minister at the hospital, and a Lung Transplant Research Ambassador.
Although he still has to be careful about lung rejection, John says he feels great.
“I got my kids through college and my wife through graduate school. I walked my daughter down the aisle, and have three grandchildren. I play a lot of golf.” He adds with a laugh, “I’m not getting any better at it, though.”
Mr. Sullivan’s treatment and results may not be representative of all similar cases.