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OUR PHILOSOPHY
The Living Organ Donor is perhaps one of the most vital members of the transplant process. Without Living Organ
Donors, many recipients would continue to wait on the transplant wait list in hopes of receiving a cadaveric organ. Some would
even die before an organ was allocated to them from the list. The Living Organ Donor should be viewed as an active member
of the transplant team with more importance placed on the donor, than the organ itself. As in any member of a team, the Living
Organ Donor needs to be educated in Living Organ Donation in order to facilitate the best outcome. Living Organ Donors should
have informed consent on all aspects of Living Organ Donation. No donor should feel coerced into becoming a Living Organ Donor.
Living Organ Donation is a gift that should come from the heart, not from guilt.
THE LIVING DONOR ADVOCATES
Currently the Living Donor Advocates are Registered Nurses. Each nurse has more than five years experience as a nurse.
Some have advanced degrees such as Nurse Practitioner. Some of the nurses hold positions on various nursing boards/committees
and transplant organizational committees/boards. We do have some nurses who are Living Organ Donors or transplant
recipients.
Since the nurses live in different cities in the US, communication is by phone and the internet. All have access
to the e-mail addresses on this site.
Each nurse upholds the philosophy all patients have the right to good medical care. They are committed to advocating in
behalf of Living Organ Donors. They realize the Living Organ Donor is a whole person with emotional, spiritual and
physical needs. Each nurse volunteers their time to advocate for Living Organ Donors and are not paid for their time.
OTHER MEMBERS OF LODAP
The other members of LODAP have experience with Living Organ Donation. Most are Living Organ Donors themselves
while others are the family members or friends of Living Organ Donors. These members also volunteer their time and efforts
to support Living Organ Donation. Their efforts vary from fund raising to writing letters to legislators.
HOW WE ARE FUNDED
LODAP is just in the beginning phases. Currently the funding comes directly from the LODAP nurses. Presently no
one receives compensation for their time and spend their own monies for long distance calls, supplies and postage for mailings.
It is their gift to those who have given to others.
In the past we have given donor kits and pins at the request of donors. We are now limited in what we can do. It is our
goal to obtain funding through fund raisers and selling of T-shirts. By the Summer of 2005, we hope to have a link in which
people may buy items such as T-shirts and CDs, the proceeds will go to helping Living Donors.
THE HISTORY OF LODAP
In 2001, a Registered Nurse donated a kidney to her relative. The pre-donation process was lacking teaching material
and information regarding living donation process. When she requested printed teaching material, she was informed there was
not any information in print available. Frustrated, she went to the internet which produced very little results. There
was no Living Organ Donor Registry tracking outcomes for the Living Organ Donor, even though a registry had been in place
for recipients. Realizing there wasn't any teaching information or assistance available for Living Organ Donors, she began
researching, developing and practicing her own plan of care. The plan encompassed the emotional, spiritual and physical aspects
of donation. Her main contact was with another Living Organ Donor who offered emotional and informational support.
Complications occurred after donation. In order to find resolution and assistance with her problems, she contacted organizations
regarding the problems she encountered. Since very few people seemed concerned or willing to assist, she began searching Living
Organ Donors who had problems in hopes of finding an answer. During the networking, she found other donors who voiced
their concerns with the lack of information available. While some of the problems were physical, other problems such as loss
of jobs, health insurance and financial difficulties were cited. After listening to the stories from other living organ donors,
it was decided reform needed to take place. In November 2002, she went to Washington, DC where she joined another woman whose
husband had died while in the hospital after donating an organ. They attended the ACOT conference and met with various aides
and assistants to U.S. Senators.
The media was most helpful in bringing forth the issues to the public's attention. While financial and physical problems
were a concern, the lack of support spurned her to place a separate phone line in her home for Living Organ Donors to call.
She also developed a comprehensive donor advocate plan after a Senator's aide called in 2003, requesting a solution to the
issues. A program was designed in which a Registered Nurse would act as an advocate for every Living Organ Donor throughout
and after the Living Organ Donor process. The goal of the program was to protect the Living Organ Donor by instituting
a Standard of Care for Living Organ Donation developed by Medical Doctors and Nurses. The program would also provide educational
material to the donor and transplant center. The plan was sent to various people and organizations involved with Living Organ
Donor transplantation without any results. In order for the plan to exist, government funding similar to the OPTN contract
would need to be enacted. Knowing public pressure would need to be placed on legislators in order to obtain funding, she continued
to make the public aware of Living Organ Donor.
In 2003, she went to Chicago to participate in a March for Living Organ Donor Rights. The march was organized by
Rita Kocian, a Registered Nurse who experienced problems after donating a kidney. It was during the trip to Chicago nurses
joined together in behalf of the Living Organ Donor. Rita passed in 2004. Even with Rita's passing, she and another nurse
continued the efforts.
The two nurses became more frustrated as time passed because nothing was being done to insure every Living Organ Donor
had an independent advocate throughout the whole donation process. They decided to attempt a donor advocate program on
a smaller scale. While the goal of the original program outlined was to become proactive to protect the donors, they realized
they couldn't do this without government funding. On a much smaller scaled they could begin providing educational resources
and links for the Living Organ Donor via the interenet. One night a posting appeared on a website from a donor who
was experiencing problems after donation. The donor was desperate asking for help and spoke of the receiving the worse after
care she could have imagined. The donor seemed very confused and the nurses were both concerned over the posting. Both nurses
e-mailed the donor and informed her she needed to go to the local ER and seek care immediately. The next morning one of the
nurses called the transplant center, informed them the donor was experiencing problems post donation, they needed to intervene.
The donor was admitted to the hospital where she remained for sometime. Her issues were resolved but if she hadn't been admitted
and treated, the results could have been devastating. The nurses realized time was of the essence, so the group
of nurse began to take form to advocate in behalf of the Living Organ Donors via this website.
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