Risking Life to Give Life

As demand for transplants soars, end-stage hepatitis C patients turn to
their family members for a last chance
By Mary Carmichael
NEWSWEEK

April 22 issue — The two middle-aged women sitting in
Dr. Lewis Teperman’s transplant-surgery office are
sisters, but they don’t look it. One, jaundiced and frail,
is waiting to die of hepatitis C-induced cirrhosis. The
other, flushed and fit, is waiting to save her. The
healthy woman will find out this week if she is eligible
to donate half her liver to her sister, thus endangering
her own life. “The doctors keep asking me if I know
the risks,” she says, laughing and shaking her fist like
an overeager actor. ” Death is on the line!”

BY THE TIME A patient gets on the list for a liver
transplant, death is almost always on the line. As of April 3,
the list was 17,641 names long; at least a third of those have
end-stage hepatitis C, and within the year almost 2,000 will
die waiting. Though more than half of Americans tell pollsters
they have signed donor cards, the numbers of available
cadaver organs don’t add up. So in the past five years, doctors
have resorted to a miracle that ought to be unnecessary:
living-donor liver transplants.
Adult live liver transplantation is still radical and rare, and
probably will always be. Last year just 2 percent of donated
livers came from healthy friends and relatives of patients. If
liver transplants from cadavers are grueling, a living-donor
operation is twice so, taking up to 18 hours total. It is far more
complex than a living-donor kidney transplant, and also
ethically trickier. The surgery defies the doctor’s cardinal rule
to do no harm—new statistics show that 10 percent of donors
will have complications, and 1 percent will die. At least two
living donors have needed transplants themselves after
surgeons took too much tissue. The January death of a donor
at Mount Sinai Hospital in New York, the leading U.S. center
for the procedure, was another grim reminder that no strong
medicine comes risk-free.

The Spread of Hepatitis C

But a 1 percent mortality risk pales next to the 100
percent certain death of a loved one. It is that math that made
John Russell, 24, beg his mother, Dee, to let him volunteer as
a donor when she was diagnosed with hepatitis C last year.
Dee Russell has learned to live with her disease. She’s not
sure she could live with herself, though, if John suffered from
the operation. “He’s my only child,” she says. “His response
is, ‘Well, you’re my only mom’.”

Even if John is a match, his mother will face more
obstacles. A live-donor liver transplant can cost up to
$500,000—twice as much as a cadaveric transplant—and that
excludes the $30,000 in anti-rejection drugs required annually
for life. Some hospitals accept only patients who can pay
upfront, and some insurance—including Russell’s original
policy—covers a mere fraction of the cost. Russell moved to
California for better coverage; she can afford surgery now. But
it still may not save her. “Almost all patients will reinfect their
new liver,” says Teperman, director of transplants at New York
University Medical Center. “The same damage could happen
again in five years.”

In those five years, drugs called pegylated interferons
may become available to protect transplant livers from
reinfection. And halving livers from cadavers may in effect
double the available organs. But as the hepatitis C epidemic
wreaks its slow-motion havoc, demand for liver transplants is
expected to jump by 500 percent by 2008. Without more
donors giving life to strangers, a lot more brothers and sisters,
sons and daughters will have to put their own lives on the line.

© 2002 Newsweek, Inc.
http://www.msnbc.com/news/738466.asp

(Many thanks to Andrew Field of Printing for Less for this article and the following information:

Make a Financial Contribution
A fund has been set up in Dee Russell’s name with the National Transplant Assistance Fund (NTAF) acting as trustee. All contributions are sent directly to NTAF, and they disburse as appropriate for liver
transplant related expenses.
All contributions are tax deductible to the full extent of the law. This fund is administered by the National Transplant Assistance Fund, a 501(c) 3 non-profit tax-exempt organization dedicated to providing
fundraising assistance to families incurring financial challenges due to an organ/tissue transplant or other catastrophic illness and to promoting donor awareness. For information call 1-800-642-8399.

All contributions made to this fund are reserved for the lifetime of the recipient. Any funds not disbursed by the time of death go into a general fund to assist others with transplant needs.

Make CHECK payable to:

NTAF Liver Transplant Fund

In Honor of Dee Russell (in memo section)

Send to:

NTAF Liver Transplant Fund

Suite 230, 3475 West Chester Pike

Newtown Square, PA 19073

To pay by CREDIT CARD:

Call 1-800-642-8399 or
Contribute online at http://www.transplantfund.org.

(IMPORTANT!) Include the following on all payments:
In Honor of Dee Russell
We are grateful for contributions of any amount.
Financial Goal: $250,000

Want to make a contribution, but you’re short on cash?

Consider sending smaller amounts monthly. $20, $10 or even $5 per month can add up! And, transplant expenses are incurred for the remainder of
the recipient’s lifetime.

Dee’s picture and a brief bio is at:
http://www.home.earthlink.net/~deerussell01/