Cingles Info

Bettering the odds for living donors
Transplants: Doctors aim to make sure people know the risks but face as few
as possible.
By Jonathan Bor
Sun Staff
April 29, 2002
When David Kieffer offered to give up 60 percent of his liver to save his
ailing friend's life, doctors launched into what would seem an endless
series of warnings.
He was a healthy young man electing to undergo major surgery for no reason
but to help someone else. He could suffer serious complications, even die.
With that in mind, they said, he could back out at any time, right up to the
hour of surgery.
But Kieffer, saying he was motivated by friendship and God, went through
with the 12-hour operation two weeks ago at Johns Hopkins Hospital. He
emerged healthy, if queasy and fatigued, and free of regret.
"It was a risk, but we didn't feel any pressure to do it," said the
28-year-old Kieffer, explaining that he made the decision with his wife,
Marty. "We felt compelled to do it by love."
Over the past decade, the rapid growth of "living donor" transplants has
provided hope to people who might otherwise wait years to receive livers and
kidneys from accident victims and brain-dead patients. But the case in
January of Mike Hurewitz, a 57-year-old journalist who died three days after
donating part of his liver to his brother at Mount Sinai Hospital in New
York, has raised concerns about their safety.
Although doctors acknowledge the risks that liver and kidney donors face,
they say that nobody knows the true complication and death rates because
surgeons are not required to report problems.
"There are complications that occur that are not generally known about
because there is no forum for making them known," said Dr. Andrew Klein,
chief of the transplant program at Hopkins. "There should be a way to
honestly collect data - some sort of national registry or oversight."
What distinguishes living-donor transplants from other surgical procedures
is that they are performed on patients who are perfectly healthy, placing an
even greater burden on doctors to "do no harm."
"These patients are being subjected to risk for no immediate benefit to
themselves," said Dr. David C. Cronin II, a transplant surgeon at the
University of Chicago. "We have to protect those people we call heroes."
In the 13-year history of living-donor liver transplants, there have been
three reported deaths among donors in the United States, a mortality rate of
about one-half of 1 percent. Arguing that some deaths probably go
unreported,
Cronin estimates the actual rate is probably closer to 1 percent.
Living-donor kidney transplants have been performed for about 45 years and
are much more common. Of the 14,000 kidney transplants performed last year
in the United States, about 5,500 were from live donors. The risk of death
is
thought to be far lower than it is among liver donors, though the exact rate
is similarly hard to discern.
Nobody has died donating an organ at Johns Hopkins or the
http://www.umm.edu/ University of Maryland Medical Center, according to
doctors at the two transplant centers.
But they acknowledge that the procedures pose significant risks of
complications, and each center has seen its share.
Surgeons say they have reduced the risks to kidney donors by employing
laparoscopic techniques that enable them to remove the organ through a tiny
incision.
Nonetheless, doctors could nick a blood vessel, a problem that would require
a surgical repair and blood transfusions. Other possible complications
include infections, wound hernias and bowel injuries.
"Statistically, their risk of dying or having something really bad happen to
them is about the same as it would be driving a car for a year," said Dr.
Robert Montgomery, who performs kidney transplants at Johns Hopkins. "That
helps them get their arms around what they're doing in terms of risk."
Montgomery said doctors must remain vigilant about potential complications
as the number of people who can donate kidneys expands. At Hopkins, doctors
are enabling people to become "altruistic donors" to people they don't know.
Also, they have devised methods that allow patients to accept kidneys from
people whose blood types don't match their own.
Liver donors face a higher risk of complications, in part because doctors
must cut through a large organ that is filled with blood vessels. Klein said
he worries about infections, bile duct leaks, wound hernias, nausea and
pain.
At Maryland, doctors recall a patient who was left with numbness in his arm,
possibly because his nerves were unnaturally stretched on the operating
table.
Doctors at Hopkins and Maryland say they also recall a patient at each
institution who developed a blood clot that passed to the lungs. The clots
were successfully treated, but represent serious complications that
sometimes
cannot be prevented.
Dr. Luis Arrazola, a surgeon who runs Hopkins' living donor liver transplant
program, said he began testing prospective donors last July for rare genetic
factors that could place them at higher risk for clotting. Since then, he
has rejected two people who otherwise would have become donors. Nobody
accepted into the program has developed the problem, he said.
"We don't want to take a lot of chances and end up overdoing a lot of things
for extra protection," said Arrazola.
But some problems cannot be foreseen, doctors say.
Eric Hansberger, a Howard County man who donated part of his liver to his
father three years ago, woke up short of breath a few nights after he was
discharged from Hopkins. He was rushed back to the hospital where doctors
had
to drain an abnormal amount of fluid that had collected in his chest and
abdomen.
"The hospital does prepare you as much as they can mentally or physically
for what can happen, but you never think anything is going to happen to
you," said Hansberger, 40, adding that his hospital care was exceptional.
Dr. Stephen Bartlett, chief of the transplant program at the University of
Maryland, said people thinking about donating a liver might be comforted by
estimates that they have about a 99 percent chance of surviving surgery.
That's understandable: Most people would run into a burning building to save
a friend or relative if they faced much poorer odds.
But the analogy goes only so far, he said. Doctors must make decisions in an
atmosphere of calm deliberation. The New York case, occurring at one of the
nation's premier transplant programs, should cause hospitals to exercise
even greater care and to make sure they warn patients of the risks, he said.
"I think society was really shocked by this man's death," said Bartlett.
Hurewitz suffered a bacterial infection not often associated with the
operation, and appears to have died after inhaling large amounts of vomited
blood.
The New York health commissioner, Dr. Antonia Novella, said she didn't know
if his death could have been prevented, but held the hospital responsible
for
inadequate care after surgery. This includes allowing a single medical
resident to care for 34 post-surgical patients, one of whom was Hurewitz.
She fined the hospital $48,000 and banned it from doing live-donor liver
transplants for six months.
At Hopkins and Maryland, doctors say, patients are intensely watched in the
days after surgery - not just by nurses and residents, but by the surgeons
who did the operation.
"We're very vigilant and anxious and concerned, really until the patient
goes home," said Dr. John Colonna, a transplant surgeon at Maryland. "I
can't say the New York case has heightened our anxiety. There wasn't any
room to
heighten it."
"If you walk past the surgical intensive care unit any time of day, you can
see three or four people looking," said Dr. David Edwin, a psychologist who
counsels organ donors at Hopkins. "This is the worst nightmare, starting
with one sick person and ending up with two."
Before Hurewitz's death, one of the most passionate voices calling for
mandatory reporting of transplant problems was Rhonda Boone - the widow of a
North Carolina man who died three years ago after donating part of his liver
to his half-brother at the University of North Carolina Medical Center in
Chapel Hill.
He died of multiple complications, including internal bleeding and a bile
leak, problems that caused him to become "grotesquely swollen from head to
toe," she said.
Boone, who has sued the hospital, contends that doctors did not warn her
husband of the risks and failed to diagnose an underlying liver disorder
that should have ruled him out as a donor. Recently, she reached out to
Vicki Hurewitz, the Albany journalist's widow, and the two joined forces in
calling for a national registry.
"Some people are blinded by the fact that they just want to help somebody,"
said Boone. "But maybe they wouldn't be doing this if they knew it wasn't
100 percent successful."
For now, the best information is likely to come from a national database to
be established next year by the National Institutes of Health. The database
will track outcomes, complications and quality of life measures, and should
help to establish which surgical techniques achieved the best results.
But it will collect data from only eight to 10 of the largest medical
centers, and is not meant to serve as a definitive registry, said Dr. Jay
Hoofnagel, director of the NIH digestive disease and nutrition division.
Kieffer, the Gettysburg College chaplain who donated part of his liver at
Hopkins, said that after five weeks of testing and counseling, he went into
surgery fully aware that he could die.
But after a previous donor had been disqualified for health reasons, he was
determined to help his sick friend, Brent Pohl.
Pohl, a 28-year-old engineer from Timonium who attends the same church as
Kieffer, suffered from a progressive liver disease that could lead to
cancer. He was discharged a week after surgery, looking robust and brimming
with
optimism.
"They don't let you donate until you demonstrate you understand the risk,"
said Kieffer, who lives in Littlestown, Pa. "But you need to be ruled by
faith, not by fear. And Brent needed me."
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