The Challenge: Cystic Fibrosis
Jay Starr was in the room in 1975 when his younger brother, just four years old at the time, was diagnosed with cystic fibrosis (CF). Cystic fibrosis is a serious, life-long disease that causes glands throughout the body to make abnormally thick, sticky mucus. Since CF is a genetic disorder, there was a good chance he could have it as well.
After undergoing some tests, Jay, then 13 years old, received the harrowing news that he had CF as well. Doctors told him to live his life to the fullest because at that time, most people with CF did not live past 20. Jay had always been full of life, and was determined to beat those odds.
As the years went on and better treatment options became available, Jay continued to climb the hurdles and kept on living. He passed age 20, 30, and 40. In 2007, Jay’s condition deteriorated to the point where he was in need of a lung transplant. Jay and his wife Sheryl travelled from their home in Winston, Oregon to a hospital in Seattle, Washington.
On March 6, 2008 at age 46, Jay underwent lung transplant surgery in Seattle. After recovering from the surgery, Jay was able to return to his normal activities. He and his wife are avid bike riders, often riding anywhere from 12-35 miles per day.
As time wore on, Sheryl began to notice that Jay was lagging further and further behind during their bike rides. He was also experiencing recurring infections every fall. Sheryl knew something was wrong.
The Path to the UPMC Lung Transplant Program
In October of 2011, doctors in Seattle told Jay that he was in chronic rejection, and by March 2014, his health was in serious decline. Jay was going to need another lung transplant. He was placed on the lung transplant waiting list in June 2014. On December 8, after undergoing pre-transplant testing, Jay and Sheryl met with doctors but were told that they could not perform such a complex surgery. Jay was removed from the lung transplant waiting list and was recommended for hospice care.
The Starr family was devastated. But Jay saw this as just another hurdle to climb.
“I’m not ready yet,” he said. “I’m not going on hospice care. I’ll let them know when I’m ready.” The Starrs continued researching their options when Sheryl came across an article that mentioned UPMC.
Sheryl set up some initial appointments for Jay at UPMC Presbyterian after providing his history.
“He just wants to live,” she said.
Jay’s case was shared with the lung transplant team, and after he passed pre-transplant evaluation testing, the UPMC team decided Jay was a candidate. He was placed on the lung transplant waiting list in January 2015.
The Solution: A Second Lung Transplantation
The Starrs were all set to make their journey to Pittsburgh so they could be in town while they waited for surgery. They had arranged jet travel from Oregon to Pittsburgh, but just minutes into the flight the jet broke down and they had to land. Yet again, the Starrs faced a seemingly insurmountable hurdle. But word spread throughout the Starrs’ community through a Facebook page that chronicled Jay’s journey. Hearing of their plight, a local lumber company, DR Johnson Lumber Company from Riddle, Oregon, offered up their own company jet to fly the Starrs to Pittsburgh.
On February 18, 2015, Jay underwent a second lung transplant. Since his surgery, Jay has gotten back to what he calls everyday living.
“I am breathing easier now,” he says. “It’s so smooth when I inhale and exhale and I don’t have to carry around an oxygen tank.”
Jay was cleared to return home in May, but before travelling back to Oregon, he and his wife made a pit stop to New York to attend their son’s wedding.
Jay's treatment and results may not be representative of all similar cases.
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