Been There, Done That
Mentor program matches recipients with those who wait
“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 Hospital 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 makes the wait more bearable, matching candidates for liver, kidney, lung or heart transplants with patients who have already undergone transplants. Mentors walk patients through the transplant experience, answering questions, providing reassurance and serving as a tangible example of the success of organ transplant.
Rosenbaum, 61, sees mentoring those waiting for transplants as a great way to pay back the gift of a donor organ.
“I wouldn’t be here if someone didn’t make the decision to donate,” he said.
Having a mentor is a great supplement to the monthly transplant support group meetings held at the hospital, Rosenbaum said. 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.
St. Louis native, Rosenbaum lived an active, productive life with his wife, Patricia. He worked as the plant engineer for a plastics company and hunted in his free time.
Rosenbaum was diagnosed with primary biliary cirrhosis, but for years suffered few effects. Then, in his early 50s, his liver began to fail and his health deteriorated. 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.