Aaron Segedi

Look at him now, and Aaron Segedi is a picture of health. A middle school science teacher, Aaron spends his after-school hours coaching his high school's varsity football team and playing with his two young daughters.

Look back several years, though, and Aaron was anything but healthy. At age 29, not only was he suffering from advanced primary sclerosing cholangitis (PSC), a condition that caused the bile ducts inside and outside his liver to become inflamed and obstructed, Aaron had also been diagnosed with bile duct cancer (cholangiocarcinoma). His only chance for treatment was at Mayo Clinic.

Receiving grim news
Originally diagnosed with PSC at age 16, over time the disease had caused severe scarring of Aaron's liver. As a result, in 2005 his liver function had deteriorated to the point that he needed a transplant. On June 30 of that year, Aaron received a fateful call from his physician in Detroit.

"He informed me that a recent test revealed cancer cells in the common bile duct connecting my liver to my duodenum," says Aaron. "I asked if I could come to the hospital immediately to discuss treatment options. I will never forget him telling me that his hospital doesn't transplant a liver to a patient who has bile duct cancer. My doctor of over 14 years could no longer help me."
Instead, Aaron's physician in Michigan referred him to Mayo Clinic in Rochester, one of the few medical facilities in the country that offers a unique treatment option for patients like Aaron.

Providing a rare alternative
"A cancer diagnosis in addition to PSC makes a situation like Aaron's much more difficult and complex," says J. Eileen Hay, M.B.Ch.B, a hepatologist at Mayo Clinic's Transplant Center and Aaron's Mayo physician. "If you go directly from diagnosis to transplant, these patients all have recurrence of their bile duct tumors."

But, Mayo Clinic has developed a liver transplant protocol that's appropriate for certain patients with bile duct cancer who have relatively small tumors. These patients go through an intense program of radiation therapy and chemotherapy. Then, they have exploratory surgery to make sure the tumor has not extended beyond the liver. If the cancer hasn't spread, they can undergo the liver transplant. The entire course of treatment usually takes about two to three months.

"It's an aggressive regimen, and patients have to be pretty fit to go through it all," says Dr. Hay. "But, the success rates we've seen with this treatment are far and away the best anyone has had with transplant following cholangiocarcinoma."

Traveling a long road
When he arrived at Mayo Clinic, doctors determined Aaron would be a good candidate for the treatment and transplant. But, more setbacks were in store. Due to his medical condition and blood type, Aaron learned that he likely would not receive a cadaver liver for approximately 18 to 24 months. He could die waiting.
Determined not to let that happen, Aaron and his family decided to find a living donor instead. Adult-to-adult living donor liver transplantation involves removing the right portion of a donor's liver and transplanting it into the recipient. The donor's liver regenerates to full size within a few weeks of the operation, without any long-term impairment. The transplanted liver portion also regenerates, increasing in size to match the recipient.
The first person to volunteer was Aaron's brother. After undergoing several days of testing, he was told that, due to the size of the left lobe of his liver, he couldn't be a donor. According to Dr. Hay, this experience is common among people looking for a living liver donor.

"There are many reasons why people are turned down as living donors," she says. "For example, you have to match body size and blood group, and the liver has to be anatomically suitable to be split. But, when a match is found, the results often are excellent."

While trying to find a living donor, Aaron was undergoing twice-a-day chemotherapy and radiation therapy at Mayo in hopes of shrinking the tumor. When told that his donor possibility wasn't going to work, the news was tough to take.

"I remember looking at myself in the bathroom mirror and wondering how much more weight was I going to lose," says Aaron. "My eyes and skin couldn't get any more yellow than they already were. I realized I was slowly dying."

Gaining new life
A month later, Aaron got a reprieve. His sister went through the tests to find out if she could be his donor. This time it was a match. More good news came when exploratory surgery revealed the radiation therapy and chemotherapy had been successful. Aaron's cancer had been contained within the bile duct, clearing him for transplant. On Dec. 7, 2005, Mayo Clinic transplant surgeons Charles Rosen, M.D., and Julie Heimbach, M.D., performed Aaron's liver transplant.

"When I woke up in the intensive care unit, I immediately felt incredible," says Aaron. "My PSC had been cured and my cancer was gone. The whites of my eyes weren't yellow. My skin no longer had that bright golden glow to it, and my extreme itching was gone. I no longer felt like I was dying."

On Dec. 30, six months after being diagnosed with bile duct cancer, Aaron returned home. Seven weeks later, he was healthy enough to cheer on his wife as she gave birth to their second daughter. That fall, he returned to his teaching and coaching full time. Now, he only visits Mayo Clinic for follow-up exams.

"Quality is the word that comes to my mind when I think about the care I receive at Mayo Clinic. Its doctors offer the best medical knowledge and have access to the best technology available," says Aaron. "As a patient, I have always been treated with great respect. I have never once felt rushed by any doctor or nurse. To me, Mayo Clinic is a facility that cares, performs medical miracles and most importantly, gives hope."