Tom Williamson, a competitive distance runner in high school, thought he was simply out of shape when it became increasingly difficult to breathe while doing everyday activities around his Northwest Chicago suburban home. It was something he lived with until an excruciating stomach pain put him in the hospital.
“I was diagnosed with diverticulitis and kept overnight,” Tom says. “The next morning another doctor came in and said, ‘I’m here to talk to you about your lungs.’”
The doctor told him he had alpha-1 antitrypsin deficiency (Alpha-1), a genetic condition in which the body does not produce enough of the protein that protects the lungs and liver. Tom was surprised but began doing what he could to mitigate symptoms through medication, inhalers, and exercise.
Eventually, his oxygen tank could barely keep up. He could only walk on the treadmill for thirty minutes at a time, even with an oxygen tank in tow. His pulmonologist in Chicago told him bluntly that he needed a lung transplant within the next year.
Described by his wife, Linda, as a “numbers guy,” Tom naturally did his own research to identify what he considered the three best hospitals in the country for lung transplantation. He selected Barnes-Jewish Hospital, which was drivable from Chicago and close to his daughter’s family, including three grandchildren. In addition to being closer to his home and family, Barnes-Jewish Hospital is also one of the only hospitals in the country that has performed more than 2,000 lung transplants.
Tom was soon connected to Masina Scavuzzo, a transplant nurse coordinator at Barnes-Jewish Hospital who ensures patients feel informed and confident going into their procedures.
“Masina was so helpful to us before the procedure and professional throughout,” Tom says. “She and every single person we met were so encouraging and positive. I went in feeling very confident.”
Tom was added to the transplant list in May 2019 and received a call in September to come to St. Louis for his surgery, just two weeks after his birthday. He and Linda jumped in the car and drove through the night, feeling more encouraged than they’d felt in a long time.
Daniel Kreisel, MD, PhD, a WashU Medicine transplant surgeon at Barnes-Jewish Hospital, performed Tom’s double lung transplant surgery. After surgery, lung transplant patients are required to stay local for three months for frequent check-ups and physical therapy to ensure their bodies accept the new lungs—a difficult requirement for out-of-state patients.
Tom was motivated to work hard and follow the doctor’s orders during his local recovery. When he got back to his home in Chicago three months later, he ran up the stairs—something he couldn’t dream of doing before the surgery. He also happily ditched his oxygen tank and inhaler.
“I’m just so proud of him,” Linda says. “It would have been so easy to give up, but I never had to nag him. Life is motivating.” For Tom, giving up was never an option, and his competitive nature kept him focused on his recovery.
Full of gratitude for his new lungs, and his organ donor, Tom registered as an organ donor. He and Linda also generously established a planned gift through The Foundation for Barnes-Jewish Hospital to support organ transplant research and patient care services, specifically for lung transplant patients who need local housing support during the required three-month post-surgery recovery period like he did.
“It was an easy choice,” says Tom. “It was just natural. Without Barnes-Jewish, I wouldn’t be here.” He hopes his and Linda’s future gift will make it better and easier for someone to go through what he did by supporting treatment innovation and housing for patients during their extended recovery care.
His experience influenced his family as well. Several of his 10 siblings have opted for genetic testing to identify if they have Alpha-1. And his grandson, upon turning 16, was proud to show Tom that he added the organ-donor icon to his driver’s license, too.
“I’m so thankful for the donor who gave me new lungs,” says Tom, who can now enjoy long walks and spending time with his family, free of an oxygen tank.