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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on November 01, 2007, 10:02:26 AM
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UNOS Update September–October 2007
B E I N G T H E R E
‘Been There, Done That’
BARNES-JEWISH HOSPITAL MENTOR PROGRAM MATCHES RECIPIENTS WITH THOSE WHO WAIT
BY KATHYN HOLLEMAN
Is it going to hurt?” That’s the most common question
Ed Rosenbaum gets from the liver transplant candidates
he mentors.
“I tell them that, yeah, it hurts,” Rosenbaum said, “but
they give you great painkillers.” Rosenbaum is speaking from
experience. His own liver transplant for primary biliary
cirrhosis was in 2002.
And, since the Barnes-Jewish Hospital transplant mentor
program began in 2004, Rosenbaum has mentored about a
dozen candidates.
While organ transplants have become an almost routine
miracle, with nearly 28,000 in the United States 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.
Alleviating anxiety
The Barnes-Jewish Transplant Center mentor program matches
candidates for liver, kidney, lung or heart transplants with a
recipient 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, Mo., 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.
A St. Louis native and engineering graduate of Washington
University, Rosenbaum, a plant engineer at a plastics company,
lived an active, productive life with his wife, Patricia.
He 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
transplant waiting list.
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.
For allocation purposes, MELD scores range from 6 (less
ill) to 40 (gravely ill). Rosenbaum’s calculated 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 recalled. 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.
“I basically do anything I want now,” Rosenbaum said.
About a year after Rosenbaum’s transplant, the Barnes-
Jewish Transplant Center started its 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.”
Providing insight
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 a support group who has
been through 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 patients if they have a
caregiver who would like to be mentored by a former
caregiver. If a 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, Rosenbaum said.
“I try to alleviate their fear,” he said. “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 to eat who
has no appetite.
Pat’s insights and support as a caregiver for a transplant
recipient also can be invaluable.
Meeting the Rosenbaums, who have “lived the roller
coaster,” can be reassuring to a couple who wonders if their
relationship will survive the stresses of the transplant process.
“We just feel people ought to give back,” Ed Rosenbaum
said. “It’s 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.”
Many transplant centers offer support groups for
transplant candidates and recipients, and some also offer
peer-to-peer mentoring programs. For information on what your
transplant center offers, contact its transplant coordinator or
social worker. UNOS’ the online member directory can be found
at unos.org and optn.org (members > search).
UNOS’ patient website, transplantliving.org, includes
information on support groups across the country for
candidates and recipients. Visit the site (community > support
groups) to see if a group exists in your area —and to submit
information on a new group, meeting times and special events
(community > calendar of events > add an event).
http://www.unos.org/news/newsDetail.asp?id=972