Info needed on transplant list

[youngdrew]

So I have been on the transplant list for close to a year now. The problem I'm having is trying to find my status on the list. I know it's only been a year but I would still like to know. I talked to my transplant coordinator at my hospital and she said she couldn't tell me because she didn't know. That seems a little but odd to me. This is really my first brushes with this since my last transplant was living-related. My father donated. I would just like some information on how to find out or who I might call that could tell me. Thanks for any help!

[willowtreewren]

One reason your transplant clinic cannot really tell you where you are on the list is because they really DON'T know.

When organs become available the are matched across the country for the best recipients. My husband's kidney came from New England (we are in Tennessee).

You can go to the OPTN site to see what the average wait is for your transplant center, but it will only be an approximation.

Aleta

[jbeany]

youngdrew, it's a chance draw.  Asking for your spot on the list is like asking when your lotto numbers are going to come up.  When they get a donated kidney, they first look at the whole list of everyone with that blood type.  Then, in some order that only the computer programmer actually understands, they look at who has the best antibody match out of the 6 antibodies in each kidney, while factoring in wait time on the list.  The antibody match is tricky, because 6 out of 6 matching is rare.  So if we bump down into 4 or 5 out of 6, then the number of possible matches begins to multiple exponentially.   Then they have to call more than one person with similar wait time on the list and put them on notice that they might be called in.   Then they start subtracting anyone who currently has some complication that might not let them take the kidney right now.  If you survive all that, the kidney is yours, if you can get to the hospital in time.

[Chris]

Only time I found out was when UNOS accidentally taken me off the list because someone did not read the screen right when updating. Someone else with the same name got the transplant, but they marked me as getting it. So I then was told I was at the top of the list. However like previous post, you won't find out.