"Is it going to hurt?" That’s the most common question Ed Rosenbaum gets from the liver transplant patients he mentors. "I tell them that, yeah, it hurts, but they give you great painkillers," Rosenbaum says. He’s speaking from experience. His own liver transplant for primary biliary cirrhosis was in 2002. He has mentored about a dozen patients since the Barnes-Jewish transplant mentor program began in 2004.

While organ transplants have become an almost routine miracle, with more than 28,000 in the U.S. last year, the experience for those on the waiting list for a donor organ can be harrowing. Candidates for transplant are very ill, suffering from end-stage organ failure. And with the need for donor organs far surpassing the supply, they may wait for months or years for a life-saving transplant.

The Barnes-Jewish Transplant Center mentor program matches candidates for liver, kidney, lung or heart transplants with a patient who has already undergone a transplant. Mentors are available to walk patients through the transplant experience, answering questions, providing reassurance and serving as a tangible example of the success of organ transplant.

Rosenbaum, 61, of Fenton, says having a mentor is a great supplement to the monthly transplant support group meetings held at the hospital. Contact with someone who has been through the same thing can calm fears and provide answers to questions that some patients may be reluctant to ask in a group setting.

Most patients feel comfortable asking Rosenbaum anything after they hear his story.

A St. Louis native and Washington University engineering graduate, Rosenbaum lived an active, productive life with his wife, Patricia. He worked as the plant engineer for a local plastics company and hunted in his free time.

Rosenbaum was diagnosed with primary biliary cirrhosis, but for years he suffered few effects. Then, in his early 50s, his liver began to fail and his health deteriorated. He lost his appetite. His weight dwindled. His energy waned. He was referred to the Barnes-Jewish Hospital liver disease program, where he was put on the waiting list for a donor organ.

Patients listed for a liver transplant are tested and assigned a model for end-stage liver disease (MELD) score based on how urgently they need a liver transplant within the next three months. The score is calculated by a formula using three lab tests that measure liver and kidney function. Patients with higher scores are given priority for transplants.

MELD scores range from 6 (less ill) to 40 (gravely ill). Rosenbaum’s MELD score at the time of his transplant was 41. He weighed only 110 pounds. His eyes were yellow and his skin deep bronze from jaundice. His abdomen was distended with built-up fluid.

"The doctors said I was about 24 hours from dying," Rosenbaum said.

With the donor liver, Rosenbaum was soon restored to health.

"I got the liver on April 3, 2002," he said. "I certainly would have died without it. I went back to work part time that August. I was fully back to work in September."

He returned to hunting and teaching hunting safety classes.

"I basically do anything I want now," Rosenbaum said.

About a year after Rosenbaum’s transplant, the Barnes-Jewish Hospital Transplant Center started the Transplant Mentors program. Rosenbaum volunteered to serve as a mentor and to be on the program’s steering committee. His wife, Pat, also volunteered to serve as a mentor to patients’ caregivers.

"In business, as an engineer, I solve problems," he said. "That’s what I do for a living. So I thought it would be rewarding to give back with the mentor program. I can help people solve their problems."

As mentors, the Rosenbaums can answer questions, offer support and give patients and their caregivers insight into what they’ll experience on the journey to transplant and beyond. Mentors also supplement and personalize the information provided by monthly liver transplant support group meetings.

"I really encourage people to go to the support group meetings," Rosenbaum said. "No matter what you’re going through, there’s someone at support group who has the same thing."

When Rosenbaum is assigned to mentor a patient, he’ll make contact first by phone to introduce himself. He’ll then set up an informal, face-to-face meeting, perhaps for lunch or coffee, so he and the patient can become comfortable with each other.

Rosenbaum also asks the patient if they have a caregiver who would like to be mentored by a former caregiver. If the patient does, Ed will bring Pat along and they’ll all meet, maybe for a casual dinner.

The Rosenbaums let the patients determine how often they stay in contact and how much support is needed.

"I let them set the pace," he said. "I’m not trying to be intrusive. We start by talking about life in general."

But patients really seem to appreciate getting specific information about what lies ahead from someone who’s already been there, according to Rosenbaum.

"I try to alleviate their fear," he said. "Fear of the unknown is such a big thing. A lot of people have a fear of tapping (the procedure used to drain excess fluid resulting from liver failure out of the patient’s abdomen) or other procedures."

Rosenbaum said a mentor can also help to keep a patient’s spirits up or encourage a patient with no appetite to eat.

"It’s just horrendous when you get that sick," Rosenbaum said. "Having a mentor to rely on calms the whole situation down."

Pat Rosenbaum’s insights as a caregiver for a transplant recipient can be invaluable for one of the caregivers she mentors. Having someone who understands the fears and frustrations unique to caregivers can be an invaluable support, says Ed Rosenbaum.

Meeting the Rosenbaums, who have lived through the roller coaster of emotions that come with life-threatening illness and organ transplant, can be reassuring to a couple who wonders if their relationship will survive the stresses of the transplant process.

The Rosenbaums are happy to be part of the mentor program and help other transplant patients.

"We just feel people ought to give back," Ed Rosenbaum said. "It’s just so rewarding to give back to the [Barnes-Jewish Hospital Transplant] Center. I wouldn’t be here if someone hadn’t given so much to me."