I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MommyChick on July 31, 2012, 05:48:51 PM
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Ok... So Friday I was very excited to find out that I am officially on the "swap" paired donation list! It gave me more hope after waiting 7 yrs on the regular waiting list. I keep being told I'm at the top of the list yet not a single call so far. So the "swap program" seemed to be the way to find a match due to my situation/antibodies. Then yesterday as I'm on dialysis my coordinator calls to let me know that my antibodies were tested & there the kind that can't be decreased!
My antibodies are at 99% & none decreasing, talk about being bummed!! I pretty much will probably have 1 chance to get a 2nd kidney if I get lucky enough!
So I'm guessing I have better luck at winning the lottery ??? haha Guess I should start playing.
On the other hand... I was told I only had 1% chance to have my son & hes a healthy little boy! So I guess anything can happen, it just gets frustrating at times!
Staying positive though :pray;
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I know how you feel. I don't have the worst antibodies and I don't have the 'best' so my coordinator tells me. I have a live donor and I still can't get a transplant through the paired exchange program myself. My husband and I didn't make the cut in June when they did a matching run, so now I have to wait until October for the next matching run to see if there will be a match.
Sounds like you're on the top of the list though, that's a good sign. Fingers and toes crossed something happens soon for you!
It's very frustrating, I know, but I just keep plugging on and try to stay positive.
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Marna, you and that precious one (he's Adorable) in the picture deserve the best you can get. You are such an Awesome Mother and so very young to put up with this, but I got to tell you, you are a fighter. You got your son and that is worth fighting for. I wish you all the luck in the world. I love your positive attitude inspite of your trials. Hang in there and YES Miracles can & Do happen!
God Bless,
lmunchkin
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I believe that this is fairly standard for the antibodies not to go away. With paired donations once they find a donor it is customary to carry out plasmapheresis or reduce the antibody level by some other means. The paired donor list is precisely for people like you and me that are highly sensitised so I am sure that it will happen soon. I was on my paired list for a year before getting a call. The main thing is that you have a donor. Have you thought about going for an evaluation on another list at another hospital. Not all are in the same scheme. For example, John Hopkins is in the UNOS scheme for paired donation, whilst others are in the National Kidney Federation scheme. May increase your chances since you will be accessing another donor pool then.
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Well it's not exactly as bad, but I had 97% antibodies and I got a match in March. It was even sooner than I expected. It can happen. Your kidney is out there!
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Does that mean you have a live donor?
Lisa
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Does that mean you have a live donor?
Lisa
Yes I finally have a a living donor but for the swap program since no ones a match due to antibodies. But it's better then nothing so I'm hoping for the best :)
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You might as well hope for the kidney. I tried Power Ball the other night and didn't even win another free ticket.
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You might as well hope for the kidney. I tried Power Ball the other night and didn't even win another free ticket.
haha, me too :rofl;
One of these days luck will be on my side, so I hope