Transplant
Chronicles
Volume 7, Number 4
Spring 2000
A publication for transplant recipients of all organs and their families,
published by the National Kidney Foundation, Inc.
In the Game
L
ast spring, when Sean
Elliott made one of the most
dynamic plays in San Antonio
Spurs history, neither fans nor
rivals realized what a truly
remarkable athlete they were
watching. He had only recently
returned to play from a sidelining knee injury. Elliott was also
fighting a degenerative kidney
disease that was robbing him
of his strength and threatening
his life.
Elliott, 31, began his NBA
career upon graduation from the
University of Arizona in 1989,
when he was selected by the
Spurs as the third overall pick of
the NBA draft. A native of
Tucson, he finished his college
career as the all-time leading
scorer in Pacific Athletic
Conference history. During the
1992-1993 season, he was one
of the best all-around players in
his league and was on the
Western Conference All-Star
Team. After being traded to the
Detroit Pistons in 1993, he
returned to San Antonio in
1994.
to let his battle with kidney
disease diminish his drive as a
player.
Photo credit NBA Photos
Sean Elliott—before
surgery—playing to win.
His career and his scoring
average have risen steadily. As a
starter on the 1999 NBA
Championship team, Elliott
made a key play in the final
seconds of game two of the 1999
Western Conference Semi-finals
against the Portland,
Trailblazers. It was Elliott’s
three-point shot that gave the
Spurs the win. Most of his
teammates did not know Elliott
was quite ill when he pulled
them to victory. He had been
diagnosed in 1994 with focal
segmental glomerulorsclerosis,
a disease that prevents the
kidneys from properly filtering
waste from the blood. He refused
“I just felt I had a responsibility
to the team,” said Elliott in a
recent story with the AustinAmerican Statesman. “It’s been
something I’ve been living with
for a while, so I really didn’t let it
creep into my mind that much.”
According to Spurs coach Gregg
Popovich, Elliott deserves a lot of
respect for the obstacles he has
overcome. “Hopefully, people will
have an even greater respect for
what this young man has done,
given the circumstances under
which he had to do it.”
Family has always been an
important part of Elliott’s life.
Growing up, Sean and his
brother Noel, now 32,
encountered typical sibling
rivalry but have always
depended on one another. Sean
acted as Noel’s high school
basketball tutor when the older
Elliott had trouble concentrating.
The pair’s lifetime of camaraderie
Continued on page 3
Transplant Chronicles is a transAction!
Program of the National Kidney Foundation, Inc.,
COUNCIL
supported by
Pharmaceuticals Corporation
National Kidney Foundation
editor’s desk
✍
H
appy New Year to you all.
Hope you survived the busy holiday
months and are now deep into your
New Year’s resolutions. If you are
like most, one of the resolutions
probably revolved around diet and
exercise. And if you are like me,
you are finding yourself slipping at
Beverly Kirkpatrick
this point. Some articles in this
issue may get you back on track.
Politically, a major breakthrough for transplant
patients occurred since our last issue. See page 13
for details. A big THANKS goes out to everyone who
helped to get this bill supported!
This is the year of the Games. The U.S. Transplant
Games that is! I hope many of you are all set to
descend on sunny Florida. The NKF is working hard
and is very excited about taking the Games to
Disney. It will be impossible not to have a great
time!! I will be sharing the experience with 30 young
transplant recipients from the Philadelphia area.
Watching through a child's eyes is incredible!!
See you there!! TC
Beverly Kirkpatrick
for the Editorial Board
Sign Me Up...
Transplant Chronicles
Transplant Chronicles is published by the National Kidney Foundation, Inc.
Opinions expressed in this publication do not necessarily represent the
position of the National Kidney Foundation, Inc.
Editor-in-Chief:
Beverly Kirkpatrick, MSW, LSW
St. Christopher’s Hospital for Children
Philadelphia, Pennsylvania
Editors:
Ira D. Davis, MD
Vanessa Underwood, BS,
Rainbow Babies Children’s
AFAA, ACE
Hospital
Fitness Trainer/Wellness
Cleveland, Ohio
Consultant
Plaistow, New Hampshire
Maurie Ferriter, BS
NKF of Michigan
Jim Warren, MS
Lakeland, Michigan
Transplant News
San Francisco, California
Janet Karlix, PhD
University of Florida
Becky Weseman, RD,
Gainesville, Florida
CNSD, LMNT
Teresa Shafer, RN, MSN, CPTC University of Nebraska
Life Gift Organ Donation Center Omaha, Nebraska
Ft. Worth, Texas
Laurel Williams Todd, RN, MSN
University of Nebraska MC
Charlie Thomas, CISW, ACSW
Organ Transplant
Samaritan Transplant Services
Omaha, Nebraska
Phoenix, Arizona
R. Patrick Wood, MD
GALA
Houston, Texas
Editorial Office:
National Kidney Foundation, Inc.
30 E. 33rd Street, New York, NY 10016
(800) 622-9010/(212) 889-2210
http://www.kidney.org
Executive Editor:
Diane Goetz
Managing Editor:
Sara Kosowsky
Design Director:
Oumaya Abi-Saab
Editorial Director:
Gigi Politoski
Production Manager:
Joanne Charles
Editorial Manager:
Catherine Paykin
✏
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transplant athletic programs; a voice in legislative and public policy issues; participation in
NKF educational programs and activities.
Just fill out the form and mail it to the transAction Council, National Kidney Foundation,
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Transplant Chronicles, Vol. 7, No. 4
✃
2
Sean Elliott …
continued from page 1
was put to the test last summer when it was
discovered that Elliott’s disease had progressed to
the point of near kidney failure. Family members
were screened as potential organ donors. Without a
kidney transplant, Elliott would have to undergo
dialysis, a tremendous obstacle for a professional
basketball player. When the results came in, Noel
turned out to be an almost
perfect match. Noel Elliott
has said that he felt both
honored and glad to help
his brother in his time of
need. “My brother has
always been there for me
and I will always be here
for him. The Lord is with
us.”
The transplant took place
in August. In the
beginning of the 19992000 season, Elliott started travelling with the
Spurs as a color commentator.
Sean plans to return to
play this season.
“I’ve had a great career, and if that’s the end of
it, so be it. But I don’t really think that’s the end of
it,” Elliott says. Because basketball is such a
rigorous sport, doctors want to make sure Elliott
will be protected before letting him back on the
court. His new kidney was placed in the front
portion of the body, near the pelvis, and he may
need to wear a protective device to shield it from
contact on the basketball court.
Elliott is excited about the progress he has made
to date and hopes to motivate other transplant
recipients to remain active. Besides the obvious
physical challenges a comeback involves, Elliott
says that returning to basketball will be a true
mental challenge after undergoing such a
procedure. “I think it would be a great statement
for a lot of people if I could come back and play,”
said Elliott. His dream may be realized sooner than
anyone imagined. Elliott was cleared by doctors to
return to the game and the following evening, just
five months post-transplant, he joined his team for
a practice session. He is still awaiting approval by
the Spurs coach and team physicians to get back
in the game. If anyone can forge into unchartered
territory, though, it’s Sean Elliott.
At press time he had been cleared by his doctors
to resume his ball career and is practicing with the
team. TC
Sean Elliott to Serve as Spokesperson for National
Kidney Foundation 2000 U.S. Transplant Games
San Antonio Spurs forward Sean Elliott, who
underwent kidney transplant surgery August 16,
will serve as spokesperson for the National
Kidney Foundation 2000 U.S. Transplant
Games. This Olympic-style event, to be held
June 21-24, 2000 in Lake Buena Vista, Florida
at Disney's Wide World of Sports™
Complex, is for athletes who have
received life-saving organ transplants
of every type, including kidney, liver,
heart, lung, pancreas and bone
marrow. Transplant athletes will
compete for gold, silver and bronze
medals in 13 different sports,
including track and field, swimming,
tennis, basketball, cycling and golf. Elliott will
light the torch at Opening Ceremonies and
participate in the basketball event and medals
presentations.
Attendance at the 2000 U.S. Transplant
Games is expected to surpass the recordbreaking participation in the 1998 Games of
5,000 people, including transplant athletes,
their families and friends and families of organ
donors. Athlete participants range in age from
three to 75.
Fred Herbert, chairman of the National Kidney
Foundation, says, “We’re delighted
that Sean Elliott has chosen to
become our Transplant Games
spokesperson. We know he will make
a real difference in helping to get the
message out about the success of
organ transplantation and inspire
transplant recipients, donors and
those people awaiting organs and
their families.”
Elliott will join another NBA legend at the
Games, Oscar Robertson, who donated a kidney
to his daughter, Tia, a Transplant Games
athlete. Says Robertson about the Games,
Everyone who competes is already a winner in
the game of life.” TC
Transplant Chronicles, Vol. 7, No. 4
3
Living Donors Receive Leave Benefits
by Charlie Thomas, CISW, ACSW
T
he federal Government and the United
Network for Organ Sharing (UNOS), the
contractor that operates the national organ
distribution system, have enacted leave policies
for their employees that support living organ
donation. There are many times that otherwise
well-matched living donors have been unable to
donate due to the threat of lost income while
recuperating from the donation procedure. It is
true that living donors don’t assume the medical
costs of donating, because these costs are
covered by the recipient’s insurance. However,
donors have had to deplete their own personal
leave or go without any paid leave. Many were
not able to assume the financial hardship and
opted out of donating. Others proceeded and
experienced financial and family hardship. Now
these employees can receive up to 30 days (one
month) paid leave when they donate an organ,
up to 7 days if they donate bone marrow.
Patients in need of an organ transplant,
primarily kidney transplants, are often asked
“Do you have a living donor?” The answer to this
question can mean the difference between a
relatively short wait for a scheduled transplant
or waiting several years for a cadaveric donation.
Research has shown that kidneys from living
donors last longer and function better than
kidneys from deceased donors. There are several
reasons for this; primarily, a living donor will not
have experienced physical trauma, and the cold
ischemia time (the time the organ is out of the
body) is at a minimum. The number of living
donor kidney transplants more than doubled
from 1,824 in 1988 to 3,793 in 1997. The most
significant increase in living donation has come
from unrelated donors, such as spouses, friends
and in-laws. There is much recent success with
liver and lung live donor transplants.
Hopefully other employers, both public and
private, will follow the example set by the
Federal Government and UNOS. Living donation
can make an immediate difference to many
people needing a transplant. TC
In Memoriam
The NKF is sorry to report that Wayne Nix,
a longtime NKF volunteer and patient
advocate, passed away in December
1999. Wayne was committed to
empowering patients to be
informed and take control of
their health and quality of life.
His motto, "Dialyze to live,
don't live to dialyze," was the
core message of every
presentation he gave. Wayne
challenged health care
professionals, asking them to
always motivate and empower
their patients.
treatment centers around the country,
groundwork for the development of local
councils, and regional educational
programs for patients all were
begun.
Wayne Nix
Wayne was named chairman of
the National Kidney Foundation's Patient and
Family Council in 1999. Under Wayne's
leadership, a formal liaison program with
4
Transplant Chronicles, Vol. 7, No. 4
After receiving a transplant in
1991, Wayne developed a
rehabilitation program for
patients for the National Kidney
Foundation of Michigan. His
program in Michigan was
adopted by the National
Organization and was launched as
NKF's Rehabilitation, Information,
Support and Empowerment (RISE)
program in 1999.
We will all miss this very good friend and
dedicated volunteer.
ask the pharmacist
Dietary Supplements for Weight Loss
by Janet Karlix, PhD, and Phillip Treadwell, PharmD, BCPS
T
he advent of dietary and herbal
supplements for weight loss has
transformed the diet industry.
These supplements have
become extremely popular and
very profitable, and many
companies and individuals enjoy
the financial rewards of their
success. With all of the hype about
these agents, it is no wonder that many people are
curious about which one of these products would
be right for them. There are hundreds of different
brands of weight loss products available through
direct marketing, herb and nutrition shops and
even pharmacies and supermarkets. For
consumers to make an educated choice, is
difficult. The best way to assess any herbal or
nutritional product is to look at the ingredient list
and determine if the individual ingredients are
safe and effective. We will look at some issues
regarding these various products and try to lay
out some guidelines for safer use.
People who take immunosuppressants must
be very careful about the kinds of dietary
supplements or herbs they use in combination
with these drug therapies. Many herbal medicines
are known to act much in the same manner as
prescription drugs, but do not benefit from the
rigorous study that pharmaceutical agents receive
prior to FDA approval. This leaves a vacuum
within which we must determine which agents
may be safe when combined with an agent like
cyclosporine. Considering the potential
consequences of errors made based on a lack of
information when choosing a supplement, it is
best to err on the side of caution.
Supplements that are designed to reduce weight
through simple calorie restriction (e.g., Slim Fast,
etc.) are typically safe if used in moderation and
according to the manufacturer’s guidelines. These
products do not attempt to alter the metabolism or
interfere with absorption of nutrients. Therefore,
they are very unlikely to adversely interact with
medicines or food. One caution with these
products is for people taking warfarin (Coumadin).
When taking this drug, you must be very aware of
the vitamin K content of the supplements you use.
Vitamin K content with warfarin must be
moderate and consistent.
In recent news, weight loss products that
contain ephedra have been linked to heart injury.
Heart damage and injury of other organs have also
been associated with its use. Other stimulants
such as caffeine may be included in weight loss
products and are probably safer than ephedra, but
still may induce irregular heart beats or anxiety
among other nuisance side effects.
The rest of the nutritional products available for
weight loss would be best described as
questionable for transplant patients taking
immunosuppressants. This would include
Gymnema sylvestre, Noni (Morinda) and many
others. These agents may be used by many people
without reports of adverse effects, but people
taking immunosuppression are a special
population and should approach these agents with
caution. Drug interaction studies have not yet
been performed and many answers are still
unavailable. Speak to your health care provider
before using any of these agents and carefully
assess and report any problems that may be
related to the use of these products. This information can be important for you and others. TC
Phillip Treadwell is a clinical specialist at
Tallahassee Memorial Healthcare.
Weight Loss and Fiber
High fiber products for weight
loss are generally safe because
they act by providing a feeling
of fullness with very few
calories. Important points to
remember with the use of fiber
products:
take them with a full glass (or more) of
water to prevent constipation
avoid taking them within two
hours of medicines to prevent
potential problems with absorption of the medicines from your
gastrointestinal tract.
•
•
Transplant Chronicles, Vol. 7, No. 4
5
keeping fit
One Size Does Not Fit All
by Vanessa A. Underwood, BS, AFAA, ACE
N
o matter how simple your goals, you must
choose the type of exercise you do and the
intensity of the exercise based on your health,
your lifestyle and your personal preference.
I wish I could tell you that there is a golden
formula, but there are so many variables that will
determine your workout program. You will need
to consider your general health status, genetics,
exercise history and where you live in choosing
what program is right for you. So if you want to
get fit, get ready to make some choices about
your exercise goals. Remember, before you
begin any exercise program or routine,
consult with your physician.
A basic routine should be simple but
structured. As a general rule, you should work
out three days a week with at least one day off in
between, so your muscles can rest and get
stronger. An ideal workout would incorporate the
following routine and take about 90 minutes. This
routine should be your ultimate goal. You can
adapt it to your level of fitness and progress each
day until you reach 90 minutes.
✔ A 10-minute warm up, to get blood flow to
your muscles, walking, stair climbing
✔ 5-minutes of stretching, upper and lower
body. Hold each stretch 20-30 seconds.
✔ 30-minutes of weight training, essential to
gaining strength and stamina
✔ 30-minutes of aerobic activity, the key to
healthy heart and lungs, and for weight
management.
✔ A 5-minute cool-down. Cut the warm-up pace
and activity in half.
✔ 5 more minutes of stretching. This can be the
same as you did above.
But remember I said IDEAL...that doesn't
mean if you do 30 minutes or 60 minutes that
you won’t benefit.
Now it’s time to decide how much of each
weight you need to lift. In order to decide this,
you must determine your goals, and what you
want to train for. Do you want muscles that will
6
Transplant Chronicles, Vol. 7, No. 4
photo credit Jay LaPrete
Athletes from the 1998 U.S. Transplant Games.
give you short bursts of a lot of strength, or do
you want muscles that will give you strength and
stamina over a long period of time?
For those of you who may want to do some
strength training to increase your strength and
stamina for competition at the 2000 U.S.
Transplant Games consider the following
techniques:
To Build Strength:
do a small number of repetitions of fairly
heavy weight to build strength the fastest
✔ do 3-5 sets of each exercise per workout
✔ do 3-8 repetitions per set
✔ use fairly heavy weights (75-85 percent of
your one repetition at maximum, that is the
heaviest weight or close to the heaviest weight
you can lift at once).
Note: you must take a day off to recover
and allow your muscles to rebuild.
To Build Stamina/Endurance:
Muscular endurance is all about not resting.
The longer you do this the more you will extend
the time that your muscles and your body can
endure any activity. Here is your basic plan for
endurance training:
✔ lift many repetitions with low weight,
✔ do 2-3 sets of each exercise per workout
✔ do 12-20 repetitions per set
✔ use light weights (defined as 50-60 percent of
one repetition at maximum)
Continued on page 15
health maintenance
On the Road Again—Traveling After Your Transplant
by Cheryl Jacobs, LICSW
O
ne of the many pleasures and conveniences
of receiving a transplant is having the ability to
travel comfortably again. Whether you travel for
work or pleasure, upcoming summer vacations,
the 2000 U.S. Transplant Games or the possibility of spontaneous travel (considering the occasional airfare price wars), there are some things
you should always remember before you leave.
_
Pack any relevant medical records or
identifying information, including a list of daily
medication, allergies and the names and phone
numbers of your physicians, transplant center
and family members. A medical ID bracelet can
be purchased at a nominal fee from most
National Kidney Foundation affiliates.
_
Inform your health care team of your travel
and where you can be reached if you will be away
for an extended period of time. Complete any
routine checkups or blood work prior to your
departure. Finish any tests or consultations with
specialists before you leave. Obtain the names of
physicians or transplant centers nearby your
travel destination in case you need a contact
during your time away. Your transplant center
may be familiar with professionals wherever
you’re visiting.
_
If appropriate, obtain proper vaccinations
for your travels before you leave the country. Ask
your physicians or consult a local travel clinic for
the vaccinations that are required for certain
countries: make sure they know that you are a
transplant recipient. Some vaccinations need to
be given a long time before you travel in order to
be effective.
_
Keep your medications with you, not
packed in luggage that will be checked. Your
flight could get delayed, or your luggage could get
lost. Your traveling buddy or strangers may have
aspirin, but it’s highly unlikely that they will have
anti-rejection medications.
_
If you’re away for an extended period of
time, make sure that you will able to replenish
your supply, and understand how you will be
billed. Mail-order pharmacies may be able to ship
them to you at your travel destination.
_
Bring an emergency allergy kit if you have
allergies.
_
_
_
If you are diabetic, bring glucagon and
diabetic supplies so you can make a quick
adjustment if necessary.
Bring plenty of sunscreen.
Inform your travel agent, airline carrier
and final accommodations in advance if you have
any special dietary requirements. You should
also tell them if you have any special needs
during your travels so they can plan for
appropriate assistance, transportation and
seating arrangements.
_
You may want to ask your agent about
travel insurance in the unlikely event that you
might need to cancel for change your travel
plans.
_
Surf the World Wide Web if you, your
family or friends or travel agent have access. It’s
amazing how much information you can find on
the Web about destinations, accommodations,
restaurants and activities.
The Web has information for travelers with
disabilities about vacations such as safaris and
raft trips. These websites can help travelers with
disabilities plan a hassle-free and fun vacation.
Disability Travel Services (http://www.dts.org)
may be a good place to being the search. AccessAble Travel Source (http://www.accessable.com) and the Society for the Advancement
of Travel for the Handicapped
(http://www.travelagency.com/ page12.html)
are other sites worth a look.
You will find that the extra effort that you put
into planning your next trip will be worth it.
Happy trails! TC
☞ If you would like more
information about traveling
after your transplant,
please call the NKF at
(800) 622-9010, ext. 118 or
e-mail crystalt@kidney.org
to order the Travel Tips
brochure.
Transplant Chronicles, Vol. 7, No. 4
7
Living Donor Transplant Consensus Conference 2000
by Laurel Williams Todd, RN, MSN
T
he National Kidney Foundation (NKF) is
organizing yet another exciting consensus
conference. The Living Donor Transplant
Consensus Conference on the challenges and
opportunities of living donation is scheduled for
June 1-2, 2000. The National Kidney Foundation
is pleased to partner with the American Society of
Transplant Surgeons and the American Society of
Nephrology in this project. The stated purpose of
the conference is to clarify the medical, psychosocial and ethical issues pertaining to living
donor organ transplantation.
The NKF’s interest in living donation started in
1992, with a conference entitled “Controversies in
Organ Donation.” That initial conference looked at
various ways to increase organ donation, including financial incentives and living donation.
Recommendations from that conference reinforced
NKF’s beliefs that something should be done to
increase living donation and that it needed to be
done in a responsible way, providing professionals
and prospective donors with accurate information.
With the demand for donation continuing to
surpass donor organ availability, the NKF felt it
imperative that the question, “Do you have a
donor?” be asked more frequently and routinely.
Standardized educational materials for anyone
who might have the potential to be a living donor
is also lacking.
As part of the NKF’s search for answers and
solutions to these questions, a number of focus
groups were conducted with centers who were
doing living donor transplants. Through these
focus groups, the NKF discovered a need to
share protocols on living donation in both the
medical and educational arenas. It also found
much interest from among the professional
transplant societies to explore the issues
surrounding living donation.
A steering committee was formed to brainstorm
the topics and the format for the national
consensus conference on living donation.
Physicians, nurses, social workers, psychologists,
lawyers, the general public (including living
donors and recipients) make up this steering
committee.
The proposed two-day conference agenda will
include overview presentations from medical
8
Transplant Chronicles, Vol. 7, No. 4
experts in the fields of kidney, pancreas, lung,
liver and intestinal transplantation, barriers and
incentives to living donation and future
directions of living donation. Breakout sessions
will address and make recommendations on
informed consent, long-term follow-up, organ
specific medical and surgical challenges and
opportunities and needed resources for living
donors and their family members.
The short-term goal is to produce a White
Paper that identifies the multitude of issues
surrounding living donation. The long-term goal
of the multidisciplinary group is to increase the
number of lives saved each year by living
donation and transplantation.
Note: Look for updates about the consensus
conference on living donation on the NKF
Website, www.kidney.org TC
“Transitions in Transplantation:
A Continuum of Care”
The National Kidney Foundation and the North
American Transplant Coordinators Organization
are partnering to present “Transitions in
Transplantation,” sponsored by SangStat, the
Transplant Company. In conjunction with the
U.S. Transplant Games, this unique program is
designed to focus on how transplant professionals assist recipients and donor families deal
with life’s changes. The program, scheduled for
June 21-23 in Orlando, Florida, will include
specific topics for procurement professionals,
bereavement specialists, transplant social
workers and transplant dietitians. There will also
be multidisciplinary sessions to unite and enrich
all those working with transplant recipients and
donor families.
This program will be held at the Hyatt Orlando
during the U.S. Transplant Games and will
include the opportunity to participate in Games
special events. For more information, including a
registration form, contact the National Kidney
Foundation at 1-800-622-9010 or visit our
website at www.kidney.org.
Transplant News Digest
Winter Edition of Transplant Chronicles
Secretary Shalala asks transplant community to trust HHS
desire to make transplant system fairer
by Jim Warren, editor and publisher
P
resident Clinton signed the Ticket to
Work and Work Incentives Improvement Act of
1999 (H.R. 1180) into law on December 17,
1999. The bill contained a provision extending
the moratorium on implementation of the
Department of Health and Human Services
(HHS) regulation of the Organ Procurement and
Transplantation Network (OPTN) for 90 days.
The HHS rule is now scheduled to go into effect
on March 16, 2000.
Transplant News sat down in mid-December
with HHS Secretary Donna Shalala to discuss
the new moratorium, the Department’s plans
for reauthorization of the National Organ
Transplant Act, and her thoughts about the
continued stand-off between HHS and some
members of the transplant community over
implementation of the HHS regulation.
HERE ARE EXCERPTS FROM THE INTERVIEW
WITH DR. SHALALA:
TRANSPLANT NEWS: For the second year in a
row, Congress put a last-minute hold on the
implementation of the regulation. What is the
fight all about? Why is it still going on?
DONNA SHALALA:
I wouldn't describe
it as a fight.
There's certainly a
fundamental
disagreement here,
but what we're all
after is what's best
for the patient. We
believe that a fairer
system, based on
medical criteria,
determined by the
transplant surgeons themselves, is the way we
ought to go. We believe we ought to have
constant improvements as the science changes
to make our transplant system better than it
already is. We’ve had marvelous breakthroughs
and the transplant community ought to take all
the credit for these breakthroughs. But we did
need to make improvements in the current
system. That's what the new rule's about.
TN: One of the ongoing arguments is that the
secretary should not be able to make medical
policy. That it is best left to the transplant
community. And yet you’ve addressed that in
the regulation and said we do address this in
the regulation. You make the policy. Why is this
still an issue?
SHALALA: I don’t know. There’s still a lot of
distrust in the discussion that we're having and
we need to get beyond that distrust because we
have made it very clear that medical decisions
and medical criteria, ought to be determined by
the medical professionals themselves. We have
repeated that over and over again. The one
thing I can say about this department is that we
have all been consistent in what we've written,
and what we've said. And we couldn't have been
clearer. Our whole process has been transparent. We’ve said this at at least five hearings.
I’ve said it repeatedly, that these decisions
ought to be made by medical professionals.
TN: Senator Jeff Sessions, one of the leaders
in getting the moratorium extended, said
Republicans cannot allow Secretary Donna
Shalala, an unelected bureaucrat on Congress…
You aren’t an elected official—what role
should Congress play in this, vis-à-vis,
the department?
Transplant Chronicles, Vol. 7, No. 4
9
SHALALA: Well, Congress has a key role
obviously. We make recommendations for policy.
Also the reauthorization of the transplant act in
part Congress’s role. There are different
branches of government; we all have different
responsibilities. The Institute of Medicine (IOM)
report has made it very clear that the government of the United States has a legitimate
interest and accountability responsibility in this
area for the policies that are made. But look at
what congress asked us to do. They asked us to
do a study by the IOM; we’ve done that. They
asked us to consult with the transplant
community; we have clearly done that. And
they've asked us to come up there repeatedly
and explain what we're doing and why we're
doing it. We have followed every directive that the
congress has given us, including comment
periods and broad consultations. We followed the
guidelines and implemented the recommendations of the IOM. So everything that congress has
asked us to do, we have done.
TN: The regulation is now scheduled to be
implemented sometime around mid-March. That
gives Congress about a two-month window to
hold hearings on the reauthorization of the
National Organ Transplant Act. What do you
expect to happen and what are your feelings
about the regulation?
SHALALA: I expect those to be a thoughtful set
of hearings in which we will again repeat that we
believe the transplant community itself ought to
set medical criteria. We have a good system. It
can be made much better. So we will repeat that
during the hearings. I expect Congress to take a
thoughtful look at the existing law in the process
of determining the reauthorization of the law. I
believe that we will have directives, the kind of
directives that we have laid out in our rules
being implemented. So, I think that we all ought
to get on with this, because what we're interested
in is the patients.
TN: You sound very confident that the regulation
eventually is going to be implemented. Are you?
SHALALA: We need to work on this issue of trust
with the transplant community. There's more
distrust on this issue than any issue I've ever
10
Transplant Chronicles, Vol. 7, No. 4
dealt with. We need to get over that and focus on
the patients and improve the quality of the
system that we currently have. That can only be
done if we move forward together. And I'm very
confident that at the end of the day we will in
fact have a fairer system, a system that's based
more on scientific evidence and on the
remarkable changes that this community has
been responsible for.
TN: Everyone seems to agree on one thing—if
there were enough organ donors to go around,
this would not be an issue. Yet many believe,
myself included, that the irony is this very public
fight impacts on people deciding not to donate,
that it has fed into their fears about the system.
How do you respond to this and what would you
like to see happen?
SHALALA: First of all, the department and the
Clinton administration are vigorously working
with the transplant community pursuant to
increasing the number of organ donors—both in
our rules related to the Health Care Financing
Administration and Medicare and hospitals, as
well as the national campaigns… with our
partners, the number of organ donations are
actually up by six percent. However, all of us
fear that if we continue the kind of acrimony
that we've had, that people perceive it, that the
system is unfair, that that will affect their
behavior. We cannot take that chance. And we
need to work through the distress that currently
exists in the system. I pledge myself to do that. A
lot of it I will do personally. I know that we can
get over this because at the end of the day, this
is about quality health care. This is about
fairness. And this is about life and death, so
fundamental to what all of us care about.
TN: If you could say one thing to the transplant
community to sum up this issue and what they
can expect for the year 2000, what would that be?
SHALALA: We can do this together. We have to
restore trust. We have to be able to communicate
with each other. The transplant community
has to believe us when we say that we want
medical criteria to be determined by medical
professionals. We have said that repeatedly. The
department has done that repeatedly in a whole
set of areas. And there's no reason not to believe
that we will do that now.
SMALLER LIVER TRANSPLANT CENTERS HAVE
HIGHER MORTALITY RATES, ACCORDING TO
UNOS STUDY
Centers performing 20 or fewer liver transplants annually have mortality rates that are
significantly higher than those of centers doing
more than 20 such procedures each year, but
the public is unaware of these differences,
according to a study in the December 30, 1999
issue of The New England Journal of Medicine.
The one-year mortality rate for the low-volume
centers [during the period between January 1,
1992 and April 30, 1994] was 25.9 percent, as
compared with 20 percent for the high-volume
centers, reported Erick Edwards, PhD, of the
United Network of Organ Sharing (UNOS) and
co-authors from the University of California at
San Francisco, University Hospitals of Cleveland,
Ohio, and the University of Iowa College of
Medicine in Iowa City. Thirteen centers, all of
which had low volumes, had one-year mortality
rates that exceeded 40 percent, and the rate at
one of these centers was 100 percent.
The effect on mortality of the number of
procedures performed per year was even greater
when low-volume centers affiliated with highvolume centers, such as pediatric transplant
programs, were compared with non-affiliated
low-volume centers. The one-year mortality rate
for the group of all high-volume centers plus
affiliated low-volume centers was 20.1 percent,
compared with 28.3 percent at unaffiliated lowvolume centers (P<0.01), according to the
investigators.
Presumably, patients requiring liver
transplants would steer clear of centers with
high mortality rates, if they were informed about
survival statistics and had a choice as to where
their transplants would be performed. The fact
that 837 transplants were done at low-volume
centers during the study period suggests that
the information available to patients and
referring physicians is inadequate, or that
regional health care systems may be forcing
patients to go to centers with poor results, the
authors concluded. Information regarding the
outcomes of liver transplantation at
transplantation centers should be made widely
available to the public in a timely manner, they
added.
Because organs are distributed geographically,
patients at large medical centers tend to
languish far longer on liver transplant waiting
lists than their counterparts at smaller facilities.
As a result, the current distribution system
creates a perverse incentive that drives people to
smaller, less-experienced centers, thus propping
up institutions with higher mortality rates. The
new Department of Health and Human Services
regulations, scheduled to take effect in March,
could reverse this situation by assuring that
scarce livers are available first for the sickest
patients, who tend to be cared for a large, highvolume university medical centers.
RESEARCHERS REPORT MAJOR OBSTACLES
TO ANIMAL-TO-HUMAN TRANSPLANTS ARE
BEING OVERCOME
Data presented at a xenotransplant conference
held in Boston, MA, in early December suggest
that researchers are making headway in
overcoming some of the major obstacles to
animal-to-human transplantation.
Scientists BioTransplant, Inc. announced they
had developed an inbred group of miniature pigs
that do not pass on porcine endogenous
retrovirus (PERV) to human cells in the
laboratory, unlike all other breeds that have
been tested. Clive Patience, leader of the
BioTransplant team, believes the discovery of a
non-infecting pig line could eliminate one of the
biggest concerns about xenotransplantation.
“Disease transmission is the last thing any of us
wants,” he said.
Two other research groups represented at the
meeting said they may be close to producing the
first clone of an adult pig, a research milestone
that could allow scientists to make copies of
genetically engineered swine whose organs
would be compatible with the human immune
system. Researchers at PPL Therapeutics, Inc.,
the company that created Dolly the sheep, the
Transplant Chronicles, Vol. 7, No. 4
11
first cloned mammal, reported advanced
pregnancies with cloned pig fetuses although no
births yet. Pigs are especially difficult to clone
because sows need at least four gestating
embryos to maintain a pregnancy, said David
Ayares, PPL’s vice president for research and
development. But according to Robert Lanza, a
scientist at Advanced Cell Technology, the effort
is worth the potential payoff. “Once we’ve cloned
the first pig, that will accelerate the whole field of
xenotransplantation dramatically,” he said.
Jonathan Dinsmore of Diacrin, Inc. reported
sustained success in treating Parkinsons disease
patients with brain tissue from fetal pigs—an
approach that could avoid the controversy over
the use of human fetal cells. Since trials began
in 1995, Dinsmore said that, on average,
patients receiving implants of pig fetal tissue
have improved about 20 percent. With some, this
advance could mean the difference between
being in a wheelchair and being able to get up
and walk. Similar studies are underway for the
treatment of Huntington’s disease and stroke,
and Dinsmore foresees applications for epilepsy,
chronic pain and spinal cord injuries, as well.
Biotech industry leaders predict
xenotransplantation could blossom into a $5
billion business and relieve the organ shortages
and long waiting lists that today’s transplant
patients face.
proposed new guidelines on such procedures.
They include a ban on all patients having
children following xenotransplantation, together
with rules governing the welfare of animals bred
for transplants.
NEW YEAR BRINGS HAPPINESS IN FORM OF
LIFESAVING TRANSPLANT TO 8 LUCKY
PATIENTS AT ILLINOIS TRANSPLANT CENTER
The cry Happy New Year! took on added
meaning at the Loyola University Medical Center
in Maywood, IL, as the institution reported
performing eight major organ transplant surgeries, including four on New Year’s Eve and three
more during the first four days of the new year.
The year-ending series of transplants began on
December 30 when a 65-year-old man received a
heart transplant. When the amazing run had
ended, the surgeries included a liver, a kidney
and two heart transplants in four separate
patients on New Year’s Eve; a second kidney
transplant on New Year’s Day; a double-lung
transplant on January 2; and a heart transplant
on January 4.
A woman in her 50s became Loyola’s first
transplant patient of 2000 when she underwent
a kidney transplant on New Year’s Day. TC
IMUTRAN CONFIRMS PLANS TO CONDUCT
HUMAN XENOTRANSPLANT TRIAL IN 2000
A British biotechnology company is planning
to perform the first transplants of animal organs
into humans.
A senior executive of Imutran confirmed in
December that the Cambridge, UK-based firm is
holding informal talks with transplant clinics
that could begin trials of the procedure within a
year. A transplant team lead by Magi Yacoub,
MD, of the Harefield Hospital in southern
England is among those who have discussed
xenotransplantation trials.
The news came as the UK Xenotransplantation
Interim Regulatory Authority prepared to release
12
Transplant Chronicles, Vol. 7, No. 4
Are We Missing You?
If you or someone you know would like
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Transplant Chronicles, send your
request to Transplant Chronicles,
National Kidney Foundation, 30 East
33rd Street, New York, NY 10016, or
call (800) 622-9010.
legislative update
1999 Legislative Roundup
ORGAN DONOR LEAVE ACT
T
he House of Representatives and Senate
passed legislation that will grant federal
employees additional leave for bone marrow or
organ donation. The House bill, the Organ Donor
Leave Act (H.R. 457), was introduced by
Congressman Elijah Cummings (D-MD). The
Senate version (S. 1334), was introduced by
Senator Daniel Akaka (D-HI). The bill provides
seven days of paid leave for bone marrow
donation and 30 days off for organ donation, in
addition to existing sick leave. Previous policy
provided only seven days of leave for organ
donation. President Clinton signed the legislation
in September.
MEDICARE AND MEDICAID REFORM
Months of effort by NKF and its affiliates on
behalf of transplant recipients have proven
successful. Congress included a provision in the
Medicare and Medicaid Balanced Budget Reform
Refinement Act of 1999 to extend Medicare
coverage of immunosuppressive drugs for
transplant recipients. The bill extends coverage
for Medicare-eligible transplant recipients based
on age or disability, for a minimum of eight
months for beneficiaries whose benefits under
current law expire between January 2000 and
December 2004. The bill authorizes $150 million
for additional coverage.
NKF affiliates and volunteers helped enlist
additional cosponsors to H.R. 1115 and the
Senate companion bill S. 631. Affiliates and
volunteers conducted meetings with key
members of Congress or their staffs in their state
offices and the NKF Scientific and Public Policy
Office staff met with congressional staff in
Washington, D.C. on numerous occasions. The
House bill had 264 cosponsors and the Senate
bill had 24 cosponsors, with broad bipartisan
support. This support represents approximately
three times the number of cosponsors who had
signed on to identical legislation in the previous
Congress.
THANKSGIVING ORGAN
DONATION RESOLUTION
A new Senate Resolution is hoping next
Thanksgiving will find Americans not just giving
thanks but also considering giving the gift of life.
Senate Resolution 225 designates November 23,
2000, Thanksgiving Day, as a day to "Give
Thanks, Give Life." The resolution encourages
people to consider organ donation and discuss
the issue with their families.
WORK INCENTIVES IMPROVEMENT ACT
The threat of losing health benefits has been a
disincentive for many of the disabled who want to
work. Now a work incentives provision is offering
new hope. The Work Incentives Improvement Act
establishes Medicaid buy-ins that allow the
disabled to work without losing Medicaid
coverage. It also allows the disabled to extend
their Medicare coverage for up to 78 months.
Under the provision, the federal government
would cover the cost of Part A Medicare
premiums for disabled people. Additionally, it
establishes a demonstration project to extend
Medicaid coverage to individuals with potentially
disabling conditions. The legislation provides for
rehabilitation, job training and placement
services and allows states to provide Medicaid
coverage to workers who are not yet classified as
disabled, but have medical problems that are
expected to become debilitating.
NETHERCUTT RESOLUTION
A resolution recognizing living kidney donors
for their life-saving contributions has passed the
U.S. House of Representatives. Introduced by
Congressman George Nethercutt (R-WA), House
Resolution 94 also acknowledges the medical and
technological advancements that have made
living kidney transplantation a viable treatment
option for an increasing number of patients with
end stage renal disease. TC
Transplant Chronicles, Vol. 7, No. 4
13
eating right
Should I Try the “Protein” Diet?
by Becky Weseman, RD, CNSW, LMNT
In the past months, increasing interest has
surrounded the high-protein diet. The theory
behind this diet is that it can promote weight loss
and also reduce the chance of non-insulin
dependent diabetes.
If you've been considering trying this kind of diet
for yourself, there are a few questions you should
ask. What does this diet include? What am I trying
to accomplish for myself? Does this way of eating
really work? What is the risk if I eat this way?
Health professionals may not yet know all the
answers to these questions. Here are some
questions frequently brought to our attention.
What is a fad diet?
A fad diet is one that is tried and followed for a
short period of time, that is not considered a lifelong change in the way of eating and one that does
not provide all the essential nutrients needed to
keep us healthy.
Do people really lose weight by eating a diet
consisting only of meat?
In fact, many people have tried and lost weight
on this altered way of eating. For a fairly healthy
dieter, following the high-protein diet will often
result in a loss of appetite and weight loss because
of increased water loss. When the body burns its
glycogen stores (a substance stored in the liver
and muscles that absorb water) the body is unable
to hold on to water. Weight loss that is seen on the
scale may be in large part only due to water loss
when this diet is initially started or only followed
for a short period of time. The increased danger
with this diet comes with following it for a
prolonged period of time.
Are there any adverse side effects of this diet?
When you consume only protein such as eggs,
bacon and sausage, steaks and other meats that
were previously considered taboo to eat in large
quantities, your body is forced to break down fatty
tissue for the production of energy to keep you
running! But this can throw you into a state of
ketosis, a condition in which the body releases
chemicals called ketone bodies in the blood and
urine. Being in a state of ketosis is especially
dangerous for pregnant women, people with
diabetes, and people with liver or kidney problems.
14
Transplant Chronicles, Vol. 7, No. 4
Being in a state of severe ketosis can increase the
acidity of the blood and be deadly.
I’ve heard this diet can eliminate my non-insulin
dependent diabetes. Is this true?
The idea that a high-protein diet will reduce the
risk of non-insulin dependent diabetes by avoiding
foods that cause a rapid rise in blood sugar and
insulin is still being researched by medical
professionals. Increased insulin levels in the blood
from eating higher amounts of carbohydrates and
causing fat storage and increased cholesterol levels
may not be this simple. Increased insulin in the
blood should not promote fat storage unless a
person eats too many calories. Non-insulin
dependent diabetes is often a result of insulin
resistance, or the inability of cells in the body to
pick up insulin. For people with non-insulin
dependent diabetes who are overweight, losing
weight by decreasing calories and increasing
exercise until they reach a more appropriate
weight for their height may be more helpful than
simply restricting their diet to protein.
Is this a healthy way to lose weight?
Even though a high-protein diet will promote
weight loss, it is not a healthy way of eating. A
pound of meat each day might seem like a lot to
eat, but this is still a low-calorie diet, because one
pound of even high-fat meat provides about 1,300
calories. Consuming a variety of foods from all the
major food groups but limiting their calories to this
level would still produce a weight loss, but in a
healthy way that provides vitamins and other
important nutrients.
Is there a healthy way to diet?
Eating a balance of carbohydrates like pasta,
bread, cereals, fruits and vegetables along with
meat, milk and dairy products can provide the
balance of energy-producing foods at a low enough
calorie level to allow for weight loss while still
providing the energy to think clearly and feel more
energetic!
Remember: If a diet sounds too good to be true
it often is. The healthiest way to eat is still by
following the guidelines of the Food Guide
Pyramid! TC
Note: Please consult your physician before you begin any
weight loss regiment or diet plan.
poetry corner
Prime Candidate
y
etr
po rner
co
to hide my fear,
to stop that falling tear.
by Jeff Degnan
The wait is great, for
I'm a Prime Candidate.
But I have to ask, for someone
to come to task, to give a kidney
& not a Jeepney.
Every protein marker checked,
every DNA strand scanned, down to the
mitochondria.
Heart cauterization once a year
Oh dear!
For that donation is precious,
for it is my life I beg.
The stress is high, but I have to wait
for I am a Prime Candidate.
Infinite yet unique, for everyone has two
& I need one, as I went from two to none!
Find a cross match
& the surgeon can patch.
God bless you mother,
for keeping me sane,
the toxins in my body
being such a strain.
a life renewed, will hatch.
Each day the dialysis causing a stain,
the dialysate solution I drain
then fill until for I am a Prime Candidate. TC
I am proud,
so my voice is loud,
One Size Does Not Fit All
continued from page 6
Keep rest periods short, 30 seconds between
sets. By doing this your muscles learn and adapt
to longer activities.
In sum, for sheer strength, try lifting lots of
heavy weights for short periods; for muscular
stamina and tone, medium efforts, for longer.
For a good balance, build a program that mixes
it up, because most athletes need a combination.
To achieve this balance, you need to combine the
principles of both.
✔ do 3-5 sets per workout
✔ do 8-12 repetitions per set, 10 being optimal
✔ use moderate weights (defined as 70-80
percent of your one repetition at maximum)
By incorporating these elements you are
building a well rounded body and training
yourself to handle almost any physical
situation. Should you need any advice on sport
specific training please contact me at
fitnessa@aol.com TC
Photo credit Jay LaPrete
Cycling competition from 1998 Games
Transplant Chronicles, Vol. 7, No. 4
15
medical beat
Treating Liver Cancer with Transplants
by R. Patrick Wood, MD
I n the last several years, there has been a
renewed interest in the role of liver transplantation in patients with liver cancer. In the early
years of liver transplantation, many patients with
large liver tumors, which could not be treated by
removing the tumor with surgery, underwent
liver transplants. The results, unfortunately,
were quite poor; most of the patients died of
recurrence of their liver cancer within two years
of their transplant. This group of patients with
this condition were largely abandoned as
candidates for transplantation. Even today, liver
transplantation for patients with large liver
cancers is very limited. However, liver
transplantation remains the best possible
treatment for patients who have small (less than
5 cm) tumors in a liver that is already
cirrhotic (damaged by cirrhosis). In fact, even
if the tumor could be treated with
surgical removal, the long-term
survival was much better in those
patients who received a liver
transplant than those patients who
were treated by simply removing the
cancer.
Many transplant centers have
adopted the practice of screening
patients who are awaiting liver transplants for
liver cancer. This has led to a dramatic increase
in the number of patients being discovered with
small cancers in their cirrhotic liver. Before this,
patients with cirrhosis who developed liver
cancer were given no special consideration in the
national liver allocation system. This meant that
many patients who had small liver cancers and
who would have been good candidates to receive
a liver transplant would have to wait years for
their transplant. During this time, the cancers
would often grow to such a size that the patient
went from being a good candidate to receive a
liver transplant to being a very poor candidate
simply by the size of the cancer.
16
Transplant Chronicles, Vol. 7, No. 4
Because the result of transplantation was so
good in patients with small tumors and so poor
when the tumors were large, UNOS recently
revised the allocation policy for patients with
small liver cancers. Now, patients who have
cirrhosis of the liver and a small (less than 5 cm)
liver cancer are given an additional priority to try
to get them a transplant before their tumor
grows too large. It is too early to evaluate the
results of this policy change, but it certainly will
increase the number of patients undergoing liver
transplantation with small liver tumors who can
be successfully treated with this therapy.
Patients with tumors that have spread to the
liver from other areas (so-called metastatic
tumors) have, in the past, been treated
with liver transplantation. However,
the results of treating patients with
metastatic liver cancer have been
extremely poor, and most transplant
programs have abandoned the use of
liver transplantation in treating them.
The exception is a small group of
patients whose liver cancer is
characterized by neuroendocrine
tumors, which are very slow
growing. While the results of
transplantation in this group of patients are not
as good as those patients with benign disease,
they are still quite acceptable.
In summary, liver transplantation is an
excellent therapy for patients who develop small
cancers in their cirrhotic liver. These patients
now are afforded additional priority on the
national liver allocation scheme and appear to
do quite well with liver transplantation. This
group of patients represents the major exception
to the rule that patients with a prior history of
cancer are poor candidates to undergo
transplantation. TC
Is Managed Care Creating a New Category
for Lost Donors?
by Teresa Shafer, RN, MSN, CPTC and Ronald N. Ehrle, RN, BSN, CPTC
H
ospitals and physicians work primarily
under fixed payment reimbursement systems.
The challenge for them is to provide high-quality
health care through the efficient use of health
care services, or as many would say, limiting the
use of health care services in order to preserve
the bottom line.
Increasingly, the amount of resources
expended for the care of a patient who is not
going to survive a life-threatening injury is limited
in order to avoid expending resources that will
not change the outcome of the injury or illness.
Hospitals and physicians may not be aware
that decisions to terminate care in the severely
neurologically injured or diseased patient can
have a profound impact on organ donation. It is
already difficult to recover organs from brain
dead patients where treatment was not
terminated early, without the
additional burden of terminating
care on these patients shortly after
admission to the hospital. Patients
with massive neurological injuries,
who are progressing to brain death
and for whom a physician would
consider ongoing aggressive
treatment futile, should be
supported for a short period of time,
(i.e., 12 to 36 hours). This very brief time allows
the family not only the time to come to terms
with the event, but it also allows them the
opportunity to donate life-saving organs to
another individual. A system that encourages a
physician to confer with a family of such patients
early on about Do Not Resuscitate (DNR) orders
may be limiting the ability of the family to donate.
Early referral of all imminent deaths to OPOs
can result in the OPO conferring with the
physician early and asking to continue treatment
for a period of time. Early notification of the OPO
is critical in order to ensure that care of potential
organ donors not be prematurely terminated.
staff to pose the question of organ donation to
the family. In today’s decreasing reimbursement
climate, this process is often turned upside
down. In a hurried consent process, a physician
or hospital staff person instructs the OPO to ask
the family for donation soon after a DNR order is
written, or worse yet before the patient is
declared brain dead. The message sent is: If they
are not going to donate, we are going to remove
support; and this may present a confusing
picture to a family whose loved one had been
admitted to the hospital only hours before.
A hospital attempt to reduce length of stays
and to avoid futile care expenses is driven largely
by managed care and reduced reimbursement to
hospitals for health care expenditures. This
shortens the treatment time that used to be given
to patients with devastating head injuries. Most
families do not wish to prolong treatment for a
loved one when it is clear he or she
will not survive. The question of
withholding resuscitation needs to
be posed at the right time, however.
Whenever possible, it should be
ascertained whether the patient is
eligible to be an organ donor before
the DNR decision is made, since
brain death normally occurs fairly
rapidly when there is devastating
injury to the brain.
All of this means that the OPO must be called
early following admission of a patient with a
devastating event (injury or cerebral hemorrhage). The OPO can then follow treatment of
the patient and, along with the physician and
hospital staff, offer information, treatment and,
ultimately, the opportunity to donate organs to
the family.
The impact of managed care on organ
donation should be studied in order to develop
interventions to prevent the loss due to
managed care pressures. TC
After, the physician informs the family of the
patient’s death, the OPO works with the hospital
Transplant Chronicles, Vol. 7, No. 4
17
Between Donor Families & Recipients
Ordinary Heroes
by Lauretta Kelty
M
y brother Ron was diagnosed with juvenile
diabetes when he was 11 years old. The last 10
years of his life have been marked by medical
complications; among them kidney failure. In
1997, his kidney failure forced him to go on
dialysis. He began to suffer painful bloating of
his body and he soon was unable to continue
working. In July 1999, he was told he needed a
kidney transplant.
It was very painful for me to see the life being
drained out of my younger brother. It was very
important for me to do all
I could to extend his life
long enough for him to
see his four beautiful
children grow up.
I knew that the best
organ for a transplant
comes from a living
donor with a blood and
tissue type compatible
with the recipient. I was
quickly tested for
compatibility and in
August 1999, I found out
my blood type matched
Ron's. I then had to talk
to my employer about the
possibility of taking a
Ron with his
couple of months off from
daughter Christi
work for the surgery and
(above) and
recovery. With the
Lauretta with her
support of my wonderful
sons John and
employer, family and
Patrick—post
friends, I continued with
surgery.
more extensive testing.
The next two months
were spent testing my general health and tissue
typing. Soon I received the call from the
University of Utah Hospital’s Transplant
Coordinator in October telling me that I had
18
Transplant Chronicles, Vol. 7, No. 4
passed all the medical tests and we needed to
set up a date as soon as possible for the surgery.
I felt like I had won the lottery! I was lucky
enough to be one of those who have directly
been able to extend the life of a loved one—my
46-year-old brother.
On November 5, 1999, my brother and I had
the transplant surgery. On November 16 my
transplanted kidney started working for Ron,
and on November 23 Ron went home to enjoy
Thanksgiving with his family. At this point it
really hit me and my family that being
alive is a miracle and being aware of your
life is a gift. Our family has so much to be
thankful for this year!
Since Ron and I went through the
transplant process, my family has become
closer and more appreciative of each other.
I’ve been experiencing an overwhelming
sense of pride and this strange inner
peace.
I'm still recovering from the surgery. I
am very proud of the scar I wear. I was
back at work full-time in January 2000.
Reviewing my
48 ordinary
years of life,
there is one
thing I have
recently
discovered that
will forever affect
my future—even
though we may
be ordinary
people, we have the ability to do extraordinary
things. TC
Thanking Your Donor Family
A
by Maurie Ferriter
fter receiving a transplant, most of us have
thoughts about our donor. In the case where an
organ has come from a living person, it is easy to
communicate our feelings about the transplant
experience with the donor, who is usually a
family member or close friend. This is true
primarily in some kidney donations. For the
majority of kidney transplants and almost all
other organ and tissue transplants, the donor is
someone who has died and whose family has
consented to donation. This process has
traditionally been anonymous, meaning the
recipient does not know the identity of the donor
or have the ability to contact the donor’s family.
how the transplant has affected one’s life does
not need to be long and involved. The underlying
message is usually just “thank you.” If a recipient
is struck with writer’s block and just can’t follow
through with a letter, a simple card can say
everything needed in two words: thank you.
As recipients, we have relied on medical
professionals, family members and friends,
financial helpers and others who have helped us
get to this point in our lives where a transplant
has given us this second chance. But, all of this
outside help would be useless had the family of
our donor not consented to donation. We need to
take the lead in being responsible to ourselves
and to the donor family and say
thank you in some way. This
needs to be done without any
expectation of return contact. If we
never hear from them, we must
respect their right to privacy.
The system that has been set
up for recipients to communicate
with the donor family has been
through the organ procurement
organization (OPO) that
coordinated the donation.
Recipients can write a letter and
give it to the OPO, which will
For information about
forward it to the donor family. [If
communicating with donor
Regarding Communication Among:
Donor Families
the donor family chose to respond,
families there are several
Transplant Candidates/Recipients
Health Care Professionals
their letter would be forwarded to
resources available. The National
the recipient through the OPO.]
Kidney Foundation’s Donor
Any identifying information would
Family Council and transAction
be deleted from either
Council Websites
correspondence by the OPO. This includes things (www.kidney.org) both have a lot of great
like last name, phone number, address and any
material including letters. The Transplant
text that would lead to disclosure of the donor’s
Recipients International Organization (TRIO) also
identity.
has sample letters on their website
(www.trioweb.org) or you can call them at (800)
For some recipients, this process by itself is
874-6386. The Transweb Website
enough to discourage them from relaying their
(www.transweb.org) has a great collection of
feelings about their transplant. Some people do
stories from donor families and recipients, in
not want their words to be read by a stranger in
addition to lots of other transplant—related
an OPO. For others, however, the biggest
information.
obstacle to writing a letter to the donor family
Other good sources of information and
has been not knowing what to say, or how to say
encouragement
are at your transplant center.
it. Others need to sort through many mixed
Coordinators,
social
workers and most of all,
feelings about the recent events. Feelings of
other
patients,
can
relay
their own experiences
sadness, guilt, happiness and thanks are not
in
writing
their
donor
families.
Professionals can
uncommon.
help a great deal because they have probably
assisted many other recipients in this process.
Surveys of donor families have shown that
And, the next time you are in the transplant
many families do want to hear how the
clinic waiting room, ask other patients if they
recipients are doing. The message in this is that
have written their donor families. You will find a
we, as recipients, should make the effort to
wealth of help and informational tips available
express our feelings to the family. A simple,
short letter can be very effective. A description of to you. TC
National
Commun cation
Guidelines
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Transplant Chronicles, Vol. 7, No. 4
19
ids
K
o
r
n
e
r
Holiday Party for Transplant
Recipients, Family and Friends
and Health Care
at St. Christopher’s
Hospital for Children
in Philadelphia, PA.
The National Kidney Foundation recognizes the significant contributions made
by Novartis Pharmaceuticals Corporation to transplant recipients around the
country through its sponsorship of the following NKF programs: 2000 U.S.
Transplant Games; Transplant Chronicles; and transAction Council programs.
National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Professionals