Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: YoungProspectiveDonor on September 08, 2015, 08:37:52 AM
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What level of disclosure should transplant centers provide to potential recipients official on the list in terms of their position, points/score in relation to others on the list, and/or estimated expected time remaining? Should transplant coordinators readily know this information and is it easy to obtain?
Thanks!
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While they could not tell us exactly where my husband was at on the list, they were at least able, at any point in time, to give him a general idea of time frame for wait. They could not share anything in relation to other people and their position on the list. We have talked to people who waited two days and others who waited eight years. It does depend not only on the points and position on the list, but if the kidney matches. We have several people in our support group who had multiple calls with a potential kidney, only for it to be found that it was not a good match for them.
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They really cannot say where someone is on the list because it's impossible to know the tissue match of a person who becomes deceased.
It's more like a pool, than a list, and there are points given for different scenarios.
You may already be familiar with this info about kidney allocation, but here's more if you're not:
"The New Kidney Allocation System (KAS) Frequently Asked Questions" http://optn.transplant.hrsa.gov/converge/ContentDocuments/KAS_FAQs.pdf
It's been my daughter's experience that the hospitals have been unwilling to guess or state a length of time.