Going the distance

Waking up in a hospital bed, Steve Reynolds felt good. His ice chips tasted good. Being alive felt good.

Reynolds, 52, had just gone through an eight-hour liver transplant surgery. He is one of the many people plagued with liver disease, but one of the lucky ones who made it to the top of the transplant waiting list.

Terry Way worked as a Global Positioning System surveying support worker up until his surgery. It was on his third call into the hospital, at age 49, when he finally received his new liver. He learned later that the death of a 17-year-old boy had saved his life.

Mark Rosinburg was diagnosed with Hepatitis C and was placed on the transplant list quickly but waited three years before he went into surgery. He was able to get out of bed and walk shortly after being in the hospital.

Who are these men and what do they all have in common?

Besides undergoing liver transplants at the UW Medical Center (UWMC), the men are learning to recover together in a liver support group run at the UWMC. At the end of November, the men will run in the Seattle half-marathon with Team Transplant, a new program at UWMC that is helping transplant patients get fit after surgery.

After surgery, patients are left very weak and they lose a lot of muscle. Team Transplant was a big part of Reynolds and Rosinburg's recovery. For them, the program has been a life-changing experience. The patients can now walk and run long distances, whereas shorty after surgery, they needed help walking down the driveway to get the mail.

"The donor family has given you a precious gift," said Reynolds. "You want to make sure the surgery is a success and show them you will take care of that gift."

At this time, there are about 18,000 people on the waiting list for a liver transplant, according to the American Liver Society. In order to get on a transplant waiting list, Reynolds, Way and Rosinburg had to go through a series of rigorous tests to make sure they could withstand the transplant process.

It was then that they met 36-year-old Stacey McCandlish, a social worker who runs a liver transplant support program out of UWMC.

Working with Team Transplant, Stacey McCandlish has given these transplant patients the pieces of the puzzle to put their lives back together and use the gift they were given: a new life.

These three men, each with different liver diseases and all from different backgrounds and life histories, were brought together by McCandlish's positive attitude and group support sessions. McCandlish started working at the UWMC nine years ago right after graduating from the University of Michigan.

McCandlish provides advice, talks to patients and family members about their fears and helps them learn more about their conditions. The impact she has on her patients is so great that they nominated her for a UW 2004 Distinguished Staff Award. She is one of the few people from the UWMC to have ever received an award.

Her sessions are a time when family members and those who have already received transplants can come and release emotions.

"In support group you find people to connect with," said Reynolds. "Hearing the experiences of people like you is comforting."

At group sessions there are the rich, the poor, the ex-alcoholic and the health nut -- and they would never have known each other if they hadn't been struck with this illness. Now many of them are lifelong friends.

Although the majority of liver transplants are successful with the American Association for the Study of Liver Diseases reporting a one-year survival rate of 88 percent, there are many families who lose their loved ones. One 24-year-old patient who was on the transplant waiting list wanted to graduate by the time he got his transplant, said McCandlish. Instead, he died two months before graduation, still on the list.

Death is always a possibility when the liver stops working. The body's blood is no longer clean, ammonia spreads to the brain and food no longer tastes good.

"You're going to die or get a transplant," said Way.

There can also be complications with blood type -- the hospital can receive a bad liver, or there can be allergic reactions. But these are all risks that patients are willing to take.

"I was told I had a third of my liver functioning," said Way. "I was relieved when I was put on the transplant list. There was something to fix me, where I could have a healthy life after surgery."

At group sessions, post-operation patients warn others about what to expect, and McCandlish explains what to do if a patient falls, or is knocked unconscious. Most patients get so sick they can no longer drive or work. As a patient's health declines they do not realize how sick they are and try to function normally from day to day.

Reynolds remembers walking somewhere and not knowing how he got there or why he was there.

"I remember seeing this guy at group and thinking, please don't let him die here. He always looked like he was going to drop dead, right there," said McCandlish, talking about Reynolds and how close he came to death without ever realizing it.

She keeps the patients on track with exercising, eating right, taking time to relax and making sure they think sensibly about their condition. Most importantly she helps the patients and their families deal with very important emotional issues and communicating their feelings.

McCandlish constantly checks up on the patients during doctor's visits and takes part in their exercise regimens. She is training with transplant hopefuls and post-operation patients for the Seattle half-marathon through Team Transplant.

"When I knew how serious it was I was shocked, angry, depressed," said Rosinburg. "This is the end of my life. I wasn't going to be here for my family. The support group helped me deal with the hard couple of years facing death."