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What You Need to Know About Organ Transplants

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You Need an Organ Transplant: What's Next? continued...

It's a mistake to give up and let your health care team make all the decisions, Spicer says. There are some things you can't control, but a surprising amount you can.

Start by searching for transplant centers by organ type, and then by state or by region, on the UNOS web page. Click on "Resources" and then "Member Directory."

You can get specific reports on centers nationwide by visiting the web page of the Scientific Registry of Transplant Recipients' U.S. Transplant web site, which is maintained by the University of Michigan's Ann Arbor Research Collaborative for Health. Included in the reports are waiting times, number of living vs. deceased donors, survival rates, and other facts.

The statistics can get complicated, so you should ask your own doctor or the facility to help you interpret them.

It is important, says Spicer, to educate yourself about your disease as much as you can and gather as much information as possible on organ transplants, so that you are an informed patient.

Getting on the Organ Transplant Waiting List

To get on the national transplant waiting list, UNOS tells potential recipients, contact the transplant hospital you and your doctor have decided on and ask for an appointment. You will be evaluated by the organ transplant team, which will take into account your medical history, current health status, and other variables to see if you are indeed a good candidate for the transplant.

Every transplant hospital has its own criteria for evaluation. UNOS has also developed guidelines. If the team accepts you as a candidate, it will add you to the national waiting list maintained by UNOS.

To find out if you are on the list, check with your transplant hospital. Written notices about who is on the waiting list are not sent by UNOS. According to UNOS, you may ask to be listed at more than one hospital, but be aware that individual hospitals can have their rules about that; be sure to ask.

UNOS keeps a running total of the transplant waiting lists in the entire nation, organ by organ, on its web site and updates it regularly. In July 2012, about 115,000 people were on the waiting list nationwide for organs of all types.

What's your main post-transplant concern?