Donor Newbie: Antigen matches: I've been... - Kidney Donation

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Donor Newbie: Antigen matches

Greenflower08 profile image
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I've been told I am a negative cross match (good) for my intended recipient but have 0 out of 6 antigen matches (HLA). I had to ask about those - they didn't even consider it during my evaluation and when I did it was brushed off by the nurse who said the medications SHOULD take care of that. When I asked, she told me the pairing list was only for people without cross matches and we couldn't apply to find recipient the best possible match (at least some HLA matches). I requested to speak to the surgeon and nephrologist. Later in speaking to another nurse who was surprised I was "so knowledgeable" - she told me we had a good case to be listed on the NKR (registry) to find a better antigen match because we are so young and she understood we wanted to find the best possible match. The surgeon agreed that we could go that route. However, We also have another donor who was never followed up with and has done all of their own testing with results to present.

Now the nurse is telling me we have to choose which way to go - look into that donor or be listed on NKR so "resources aren't wasted and it doesn't become a big mess" The thing is - the transplant center never followed up with that other donor so we could have had them evaluated at the same time I was and I've explained we are less focused on getting this rushed rather than trying to get recipient (and possibly someone else through the pair program!) the best match possible. There are so many things we cannot control in this process - rejection, the diseases themselves, etc. Why wouldn't we try our best and explore all options to make this surgery as productive as possible? It feels so disheartening to be told things like "we dont usually do this because of how expensive it is" or "time and resources" when you are trying to save somebody's life..

Has anyone else had success in finding better HLA matches? Or please tell me about matches you've had with 0 HLA matches.

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Greenflower08
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Greenflower08 profile image
Greenflower08

They even told me "In the future, we want to get every pair on the NKR so that they CAN get the best antigen matches" ... so you do know this is important but wont offer it because of time and money? :(

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