Wednesday, June 18, 2014

Antibodies are good......unless you need an organ

I'e mentioned before that my husband is going to be my living donor and that we started the process with the U of M.  Joacim did the initial blood workup 2 months ago, and he had to give a saliva sample a few weeks ago because too much time had passed since his blood work.  I also had to go to the U to do bloodworm for the antibody comparison.

Honestly, I've been incredibly disappointed by the lack of engagement and response from the U's transplant center.  In my ideal world, I would've thought that we'd get great service.  It isn't every day that a living donor comes along, right?

Guess I was wrong again.  Finally, I decided to follow-up with my original transplant coordinator (Joacim and I have different ones), and I left her a message to get information about the results.  Some lady named "Ann" called this morning from the transplant center, but didn't leave a last name or a phone number on her message (nice, right?) so I called Joacim's coordinator.  She looked at our file and flatly said, "There are antibodies."

Okay, for those of you that know nothing about organ donation....antibodies aren't a good thing.  Essentially one of us has antibodies in a percentage high enough to indicate a high risk of rejection.  Transplantliving.com gives a much better explanation:

Antibody Screen: an antibody is a protein substance made by the body's immune system in response to an antigen (a foreign substance; for example, a transplanted organ, blood transfusion, virus, or pregnancy). Because the antibodies attack the transplanted organ, the antibody screen tests for panel reactive antibody (PRA). The white blood cells of the donor and the serum of the recipient are mixed to see if there are antibodies in the recipient that react with the antigens of the donor.

 She's going to call into an immunologist, and the transplant team is meeting next week for review.  She said she'd follow-up but I'm doubtful.

I'm kinda stunned.

She's saying that he most likely won't be able to be my donor.

What the hell does that mean for me?  What do I do?

Honestly, I don't have a fucking clue.  I'm freaking out, no doubt.  Joacim's willing to be part of a paired exchange program (where he donates a kidney to someone else, and in turn, someone else donates a kidney to me as part of a chain) so all hope is not lost, but things just got a HELL of a lot more complicated and uncertain.

In my mind, for the last 2 years, I've just assumed that this would all work out.  Joacim would donate his kidney to me, I'd recover and then be off living life again.  Now, that all feels incredibly optimistic.  Does this mean I'll have to go on dialysis?  Will I have to wait a long time for a kidney?

I'm going to have to be someone that asks strangers and friends to make a supreme sacrifice for me.  How heartbroken will I be if no one steps up?  How emotionally rattling is this all going to be.  I hope that, when I look back on this one day, that my current freaked-out state will give me a good laugh.

I'm just wondering what the hell I'm doing with my life.

7 comments:

  1. I am so sorry. I just got the same news a few days ago that my very enthuiastic donor isn't a match because of the dreaded antibodies. Going through the same mind-numbing analysis. And, I agree, hitting up folks dor a kidney isn't fun at all.

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    1. Oh no....you too? Did they give you any specific info about the antibodies? Any other options that you're pursuing?

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  2. What are you doing with your life?.......You are living it to the utmost. I see you as one of the strongest life living people I know. But the news is a bummer. I would give you one of mine.

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    1. I don't know who you are, but thank you :) That's what I'm trying to do, but news like this sidetracks me, so it's so helpful when people like you take the time to comment and try to lift my spirits ;)

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  3. I hear you. It is an incredibly gut-wrenching, heart-aching, emotional process on both sides of the coin. I burst into tears the moment I found out antibodies were NOT yet another hurdle the person I hoped to donate to wouldn't have to deal with. His diagnosis was FSGS too and I started dating him when he was already 5 years into dialysis. We recently celebrated our 9th transplant anniversary. (Wedding anniversary is coming up). Take heart. Things can and do work out-- even if they feel (and are) really fucked up for a very long time.

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    1. Wow, Vanessa...you were a donor? That's truly, truly awesome! Thanks so much for your helpful words...I know this will somehow all shake out. Did your husband's FSGS come back in your kidney?

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Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I...