In Pursuit of a Living Kidney Transplant: It’s About Your Donor Finding You!

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In Pursuit of a Living Kidney Transplant;
It’s About Your Donor Finding You!

By Harvey Mysel

AAKP RENALIFE • JANUARY 2010 •

When someone in need of a kidney transplant
is instructed to “find a living donor,” one of
their first thoughts is, “How am I going to ask
someone to donate a kidney to me?”
In reality, most living donors say they
volunteered to donate once they heard about
their family member or friend’s need. Health
care professionals need to advise their patients:
rather than “ask” someone to donate, just let
them know about your situation. Although it’s
a subtle difference, it could have a significant
impact on a patient’s willingness and
state of mind about pursuing living
donation.
How do you start the quest to have the
donor find you? It’s very important
to start by learning as much as you
can about living kidney donation. The
more you know, the more confident
you’ll be when discussing the subject
and informing others. You will likely
be the person to educate your donor
about the process. Therefore the more
accurate information you provide, the
more you will dispel some of the myths
and misconceptions surrounding living
donation.
There are many resources you can seek to gain
information about living kidney donation.
Start with your transplant hospital and meet
with the coordinator of their living donation
program to learn how they can help you. For
additional information about pursuing living
kidney donation, visit the Living Kidney Donor
Network Web site at www.lkdn.org.
Once armed with knowledge about living
kidney donation, you’ll then need to effectively
communicate your need and the information
you’ve learned. If you have initial unease
discussing the subject, practice and rehearse
what you want to say with someone who is
willing to share your story with others, such
as a family member or friend who can also
become an advocate on your behalf. Advocates
are often the ones to educate the person who
ends up being your donor.
When letting others know about your need,
speak from your heart, make it personal, and
tell your story. You and your advocates need to
be positive. Tell others how you envision
your life improving after the transplant. And
remember, you are not asking outright for
anyone to donate.
Technology has changed the way we
communicate. Some people use less personal
channels such as the Internet to reach out
and let others know about their need. A word
of caution, some transplant hospitals are not
receptive to these less personal outlets, so
you should speak to your transplant hospital
about their living donor policies. There’s
no substitute for “high touch” personal
channels, “high tech” electronic channels
come with risks and many people have been
disappointed after months of email contact
when communication stops, so pursue these
cautiously.
“High touch” and personal channels abound.
There are many success stories of donors
coming from places of worship, schools,
reunions or local media feature stories. The
only limit in reaching out is your comfort level
of letting others know about your need.
There are myths and misconceptions about
living donation that you may confront and need
to dispel. One of the most common myths is
that only a close relative can be a match and be
able to donate. Medical advances have enabled
a much easier matching process of donor and
recipient. The need of a “perfect match”
no longer exists. New anti-rejections drugs
have allowed a much wider range of people to
become donors.
For example, in 1998, 77 percent of the living
kidney donors were from close blood relatives.
By 2008, only 57 percent of the living kidney
transplants came from close blood relatives and
this trend should continue. Also important is
the fact that medical procedures have advanced
dramatically. Today, donor surgery often uses
the minimally invasive laparoscopic procedure,
or a minimal open approach, both of which
allow many donors to return home within 1 to
3 days after surgery.
The emergence of paired kidney exchange
programs has also had an impact in facilitating
transplants between incompatible pairs. A
paired kidney exchange occurs when two or
more incompatible pairs of recipients and
donors donate or swap between each other.
More information on pair exchanged kidney
donations can be found in the November issue of
aakpRENALIFE located at
www.aakp.org/aakp-library/Big-Swap.
The laparoscopic procedure is still considered
major surgery and as such, the surgical risk,
emotional and psychological implications need
to be taken into consideration. When properly
screened, the surgical risks for the donor are not
high, and trained social workers speak with the
recipient and donor to make sure the donor is
donating for the right reason and is not under
any pressure to donate.
Letting people know about your need
for a kidney transplant may at first seem
overwhelming. However, once you get started
it’s often not as difficult as you might imagine.
Develop a plan and start slowly. The more
people you speak to, the easier it will get and
the greater your chances will become of a
donor finding you. Donors often come from
the most unlikely connections, and as such,
reach out to everyone you know. As a final word
of encouragement, in the U.S. there are more
than 16 successful living kidney transplants
performed every day. Perhaps the next happy
ending will be yours!

Harvey Mysel is a kidney transplant recipient
and Founder of the Living Kidney Donors
Network, a nonprofit 501(c)(3) organization
that offers workshops to educate people in
need of a kidney transplant about living kidney
donation and helps prepare them to effectively
communicate their need to family members and
friends. The Living Kidney Donors Network
Web site is: www.lkdn.org and Harvey could be
reached at: harvey@lkdn.org

Kidney Facts
Types of Living Donation
From Living Donors Online http://www.livingdonorsonline.org
Living related donation: the living
donor directs the donation to a specific
recipient who is a blood relative (such
as a parent, child, or sibling). Looking
at United Network for Organ Sharing
(UNOS) data for living kidney donations
made since 1988, about 75 percent were
living related donations.
Living unrelated donation: the living
donor directs the donation to a specific
recipient who is not a blood relative
(such as a spouse, a friend or co-
worker). About 24 percent of living
kidney donations since 1988 were living
unrelated donations.
Living non-directed donation: the living
donor does not direct the donation.
Instead, the recipient is selected from
a list of compatible people on a kidney
waiting list. This form of donation is
also sometimes called “anonymous”
donation because the donor and recipient
do not necessarily ever meet. Only about
1 percent of living kidney donations are
of this type.

http://aakp.org/userfiles/File/Jan%20RL%20Final.pdf