At age 21, Trevor Bougill had big plans. Following his graduation he was looking forward to spending two years in the Peace Corps in South America.
Unfortunately, Trevor had felt sick for months. His skin had taken on yellow tones, and he was losing weight. His doctors in New York initially attributed his symptoms to hepatitis of unknown origin and told him he would be fine. Instead, his symptoms worsened.
"I remember looking in the mirror and seeing this emaciated, deteriorating figure, and I was really scared of what was going to happen next," he says.
On his 22nd birthday, Trevor learned why he'd felt sick. He was diagnosed with primary sclerosing cholangitis, a chronic inflammatory disease of the large bile ducts. The disease is progressive, often leading to liver damage and eventually, liver failure.
After consulting with medical experts in New York, Trevor learned that a liver transplant was his best option. That's when he heard about Mayo's transplant program.
Trevor researched organ procurement time and survival rates and found that Mayo Clinic in Jacksonville had the best results. "I saw that the average wait for a liver transplant in New York was two to three years, and I knew I didn't have that long," he says.
Physicians at Mayo Clinic's Florida campus evaluated Trevor in early 2009 and told him his disease has progressed to bile duct cancer, or cholangiocarcinoma.
In the past, treatment for bile duct cancer was limited, and surgery was an option for only some patients, according to Denise Harnois, D.O., a Mayo Clinic hepatologist. But at Mayo Clinic, physicians had developed a treatment regimen that combined multiple therapies over a period of months leading up to a liver transplant.
"We don't just want to treat the disease but to find a cure and improve the quality of life for our patients," Dr. Harnois says. So Mayo was not only Trevor's best hope for a transplant. It was one of the few places he could find the most current treatment for his cancer. Mayo Clinic is one of the few facilities in the country with a clinical trial for treating bile duct cancer with a liver transplant, and it's a national referral center for primary sclerosing cholangitis patients.
Trevor underwent chemotherapy and radiation treatments to shrink the tumor. By June 2009, that treatment was effective enough to get him on the waiting list for a liver transplant.
"Sometimes I struggled to stay positive," Trevor says. "I had to confront my own mortality and that was hard. But without a doubt, the hardest part was the waiting. It's hard to live your life when you have to put everything on hold."
Attending support group meetings and sharing experiences with other people who were also waiting helped Trevor through this anxious time. His wait ended on Dec. 2, 2009, the day he received his transplant.
"The same day I had surgery I was up and walking the hall. I had a renewed spirit," Trevor explains.
Today, Trevor is cancer-free, although he lives with the knowledge it could return at any time. He has quarterly check ups, and Dr. Harnois remains optimistic about his future. "A vast majority of patients with cholangiocarcinoma who undergo a transplant — more than 70 percent — have a long-term survival without evidence of a recurrence," she says. "I believe Trevor to be one of them."
Trevor says he is glad he came to Mayo Clinic, both because of the medical care and the support he received. "I don't know if I would be alive otherwise."
Although his disease prevented him from serving in the Peace Corps, Trevor is still finding a way to give back with other activities, including participating in transplant support groups and raising awareness about organ donation.
In April 2010, he joined Mayo Clinic's cycling team and participated in the "Katie Ride for Life," an event that promotes organ donor awareness. Trevor also recently joined Mayo's Public Affairs team as an intern and hopes to earn a degree in public affairs.
"I have the opportunity to explore, to have new experiences, achieve new goals," he shares. "Life beyond cancer, beyond transplant is even better than you can imagine."