Saturday, October 4, 2008

The Transplant Waiting List

Waiting for surgery that will save your life. Unsure when THE CALL will come. Realizing that someone must die in order for you to survive. This part of the transplant process is hell.

Not knowing drives me nuts. I’d rather have too much information than too little. Yet most of the waiting process for transplants is, literally, in God’s hands. The docs might know a little something but they aren't very forthcoming.

I don't know how other transplant centers share information about their transplant waiting lists, but my center didn't disclose details about how many people were on its list, how sick they were, where I ranked, etc. So in the absence of information, I obsessed and searched the Internet for answers.

One thing I learned is that transplant priority is now determined by how ill a patient is, not by how long he or she has been on the waiting list. The protocol for ranking liver transplant patients changed in 2002 when the MELD score (Model for End-stage Liver Disease) became part of the calculation to determine priority among candidates. In general, MELD uses blood test results to determine the three-month mortality rate for each person awaiting liver transplant - the higher the score, the more ill the patient. (More about MELD scores another day).

I was able to fairly accurately determine my MELD score by using an online MELD calculator. Knowing my score, however, didn't answer my questions. But I got lucky.

During one of my Internet searches I stumbled upon a tremendous resource, the key to my questions, the portal to liver transplant waiting lists, aka: (the website for the Organ Procurement and Transplantation Network). Thirty minutes of experimenting and one advanced data report later, I had my answer: I was able to determine the number of liver transplant patients on the waiting list at my center, broken in detail by gender, race, age range, blood type, disease and more. Updated weekly, the reports kept me informed about other people on the waiting list and allowed me to better anticipate how long my wait might be once I was officially added. Simply knowing this info helped me manage my expectations and put my mind a bit more at ease.

FYI for patients awaiting other types of transplants: The website includes info for all types of organ transplants, not just liver, and includes centers throughout the US. Access is free and available to anyone.

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