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The organ donor/transplant system in the United States is a fragmented universe consisting of hospital-based transplant centers, organ procurement organizations and educational organizations. Thanks to the Internet, this universe is becoming easier to navigate.

Carolyn Olivarez, LVN, is senior organ procurement coordinator at LifeGift, the organ procurement organization in Houston. Olivarez says the Internet is a great vehicle to disseminate information to the public and medical professionals who don't have direct contact with transplant institutions or procurement agencies.

For the general public, the Internet provides factual information. For nurses and other medical professionals, the Internet provides a resource to access baseline knowledge.

"We get a lot of calls from student nurses and medical students who are writing papers and theses," Olivarez said. "We also hear from working nurses who may not have exposure from organ procurement agencies. If you're working in a rural hospital, helping a family make end-of-life decisions, you can use the Web as a resource."

Within the organ procurement and transplant world, Olivarez said, the feasibility of Internet-based donor lists is still a challenge. Because of the issue of confidentiality, some donors may not want to put their name on a Web site in real time.

In addition, Olivarez said, "Not all the agencies we contact have the feasibility to manage something like that 24-7."

If you need a transplant, you want somebody with a track record of good outcomes. Potential recipients now can look at data produced by the United Network for Organ Sharing to research how many transplants are done by a specific center, graft survival rates and patient survival rates.

That's what potential recipient Susan Baram did. After reading a newspaper article that mentioned UNOS, Baram went to its Web site and checked every hospital in the United States that performs transplants.

"Initially, I was looking for the hospital that did the most transplants," Baram said. "As I continued to pull up statistics, I found other hospitals were in the ballpark. Because I have small arteries, which make access very difficult, I began looking for places that do pediatric transplants even though I'm an adult. My insurance pushed Houston as a destination and my statistics concurred."
Baram complains that while she hit numerous cancer support sites and chatrooms on the Internet, she has not been able to find similar sites for people awaiting transplants.

The Internet's potential drives the mission of The Living Bank, a Houston-based nonprofit that claims to be the oldest and largest donor education organization in the country.

Now, families in hospitals at or near the time of death make most transplant decisions. Jon Eiche, president and CEO of Living Bank, wants to move that decision point from the hospital into the home. Through its education programs, the Living Bank approaches and signs up potential donors on a computerized donor data list for future retrieval in an emergency.

"We are in the process of placing our registry, which is national in scope and composed of future donors, into a database that will be accessible to organ procurement organizations and tissue banks," Eiche said. "They will have access through a secure password system."

When this registry comes online, Eiche said, organ procurement organizations will be able to download a copy of the original registration document containing next of kin and signatures. "The registry will allow a family to know that the decision on organ donation has already been made," Eiche said. "And they can see some good coming out of tragic circumstances."