John Gwazdacz was diagnosed with a rare liver disease, primary sclerosing cholangitis (PSC), when he was in his early 20s. At that time, his physicians told him he'd eventually need a liver transplant.
The 15 years since then weren't free from health problems. He had colon cancer, and most of his large intestine was surgically removed. He didn't think much about needing a transplant.
Then, almost a year ago, John felt fatigued but attributed it to middle-age. It became more difficult to blame age when his skin and eyes turned yellow. Physicians identified an obstructed bile duct, which is not unusual for patients who have PSC. Physicians were able to treat him by placing a straw-like device across the narrowed duct. After a brief period of relief, the jaundice returned and he had another device inserted. A physician then gave John some bad news — he might have cholangiocarcinoma, or cancer of the bile ducts, for which there is no cure. The physician referred him to Mayo Clinic, one of the only medical centers in the country offering a successful protocol for treating bile duct cancer with liver transplant.
"The doctor who referred me to Mayo Clinic told me I had 12 to 18 months to live without a transplant, and that there were no options for treatment except at Mayo Clinic," says John. "He said that most hospitals do not perform cholangiocarcinoma liver transplants due to a 100 percent failure rate. That made me excited about Mayo Clinic."
At Mayo Clinic, John had myriad tests to determine if he was a candidate for the cholangiocarcinoma liver transplant program.
"Many patients have bile duct cancer that has spread too far by the time they are evaluated for our liver transplant protocol," says Michael Charlton, M.D., medical director of the Mayo Clinic liver transplant program. "No one diagnosed with cancer of the bile ducts should think of themselves as lucky, of course. However, Mr. Gwazdacz was fortunate in two ways. First, he had outstanding physicians near home who were able to make the diagnosis promptly. Second, his physicians were aware of our liver transplantation for bile duct cancer program and referred him promptly."
John was accepted into the program and put on the transplant list.
A liver became available very soon.
"I was eager to have the transplant because I didn't feel well," he says. "I'd been so sick that I'd lost 40 pounds before the transplant."
About a month after his transplant, John left Mayo Clinic and stayed at the Gift of Life Transplant House in Rochester for several weeks.
"My recovery was a little slow because I'd been so sick before surgery and lost so much weight," says John. "After four months, I've gained back 25 pounds and am looking forward to going back to work full time. I'm not yet 100 percent back to normal, but I'm grateful I've gotten another chance."
John's wife, Carmen, and his daughter, Sarah, who was 11 at the time, are relieved that he had a transplant and has regained his strength.
"It was hard on them; they thought they might lose me," says John. "Sarah didn't want to go on sleepovers because she was scared something would happen to me while she was gone. She recently had her first sleepover since the transplant. She's confident now that her dad will be OK. I'm proud of how brave she was and how mature she has become. The whole time I was sick, Sarah only missed school during a few visits to me and for the transplant. She made straight A's that quarter in school. I was so proud of her."
John also is grateful for support from friends and family, especially his wife, Carmen. "She was with me everyday," he says.
John and his family are impressed with the transplant team at Mayo Clinic.
"There is no problem or question you may have that hasn't been asked or thought about before," says Carmen. "The staff made a difficult situation much easier with a lot of support and positive attitudes. When we brought our daughter to Mayo Clinic for an opportunity to ask questions about the transplant, the doctors were so kind to and patient with her. That helped her to understand and to be less afraid."
John wants others who receive a diagnosis of bile duct cancer to know that there is hope.
"There is an option, and it's at Mayo Clinic," he says. "I'm grateful that the doctor who diagnosed me knew to refer me to Mayo."
"We're grateful too," says Dr. Charlton. "Good medical care is always a partnership between patients and their caregivers. Successfully treating bile duct cancer with liver transplantation requires resources and skills that only a handful of medical centers in the world could even theoretically bring together. We're lucky at Mayo to have those resources."