Liver recipient repays gift by mentoring

April is National Donate Life Month, a time to raise awareness of the need for organ and tissue donors. More than 95,000 people across the United States are waiting for an organ transplant. More than 1,100 of those people are on waiting lists at Barnes-Jewish and St. Louis Children''s Hospitals.

Throughout April, people visiting Barnes-Jewish Hospital will be encouraged to learn about organ and tissue donation and sign their organ donor card at a booth staffed by representatives from MidAmerica Transplant Services, available at Barnes-Jewish Hospital’s north campus outside the cafeteria April 10 from 11 a.m. to 1 p.m. and at the south campus outside the gift shop April 17 and 18 from 11 a.m. to 1 p.m.

April is a special month for Ed Rosenbaum. Not only is it National Donate Life Month, it''s month in which Rosenbaum marks got his own second chance at life.

Rosenbaum, 61, of Fenton, MO, had a liver transplant at Barnes-Jewish Hospital on April 3, 2002. The donor liver is a gift he gives thanks for every day.

"I wouldn''t be here if someone didn''t make the decision to donate," he said.

Rosenbaum tries to repay his gift by being active in the Barnes-Jewish Hospital Transplant Center mentor program. The 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 an example of organ transplant success.

Rosenbaum says having a mentor is a great supplement to 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 evaluated for a transplant and 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.

When the Barnes-Jewish Hospital Transplant Center started the Transplant Mentors program, Rosenbaum volunteered.

"In business, as an engineer, I solve problems," he said. "So I thought I can help people solve their problems."

As a mentor, Rosenbaum can answer questions, offer support and give patients 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.

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.

Rosenbaum said a mentor can also be key in helping to keep a patient''s spirits up or encouraging a patient with no appetite to eat. It''s just horrendous when you get that sick. Having a mentor to rely on calms the whole situation down."

"I just feel people ought to give back," Ed Rosenbaum said. "It''s just so rewarding to give back. I wouldn''t be here if someone hadn''t given so much to me."