I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Fatkidney on December 03, 2012, 08:39:41 PM
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So I just found out today that I'm classified as having high antibodies. Which royally sucketh!!!
This is a portion of what my coordinator wrote to me, "...usually the PKE swaps we do transplant 3-12 patients who otherwise may not have been able to get a transplant because of high antibodies (like yourself)." I was unaware that I was in the "like yourself" category.
So have any of you been told you have high antibodies and still been able to get transplanted? How long did it take?
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I guess it will depend on how high your antibodies are... right now I'm 7 yrs & still waiting!
If you have someone willing to donate but is not a match for you, look into the "paired donation program" if your hospital does that. I've been told you have a better chance at finding a match that way when your antibodies are high.
Good Luck & God Bless!
:grouphug;
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My brother was involved with a paired exchange. He had extremely high antibodies and was considered 99% sensitized to the general population.
I have high levels of antibodies too. They aren't as bad as my brother's were. I'm FINALLY being listed (have to redo several tests/exams) and then they'll try matching donors. My hope is to get into a paired exchange program if I have a willing living donor that doesn't match me.
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In addition to "paired donation" is "donate to the list" - buying a spot at the top of the waiting list based on someone donating a live kidney to the list in your name (you can't donate a cadaver kidney and get credit). This isn't quite as good as paired donation since you get a cadaver kidney rather than a live one, but you still get one faster. Just be sure you get a standard criteria, rather than extended criteria, unit.
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If you go to Transplant discussion there is loads of information on a high PRA (panel reactive antigens) and lots of people who go through a process called plasmsphorses (sp) and yes people still get their new kidney.
http://ihatedialysis.com/forum/index.php?board=27.0
:flower;
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Plasmapheresis. ;D
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Plasmapheresis. ;D
This spell check only goes so far..... :shy;
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Thanks peeps! I am involved in the paired exchange with one of my friends. I'll be asking others to sign up for that as well. I've been told I have 44% class I antibodies and NO class II antibodies. I don't actually know what that means, but she said they've had patients with way worse levels than that so it's not going to be easy but also not impossible.
I saw a YouTube video with a woman describing the process of plasmapheresis. Both cool and disturbing at the same time.
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I have high antibodies and been on the list for 3 years now and at the top for over a year and still waiting. Guess it depends on the circumstances on how long you wait like antibody level and antigen match. Like anything with this disease there are no precise wait times you could get a transplant in 6 months or wait 20 years it's just a waiting game.
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There are desensitization programs... I'm not sure how well they work, but I know they're out there. I have high antibodies as well, but I'm not currently on the wait list as the docs advised against another cadaver tx. I was on the list for 5 years before my last tx which lasted only 9 months because my antibodies kept creeping up. Or so that's what U of M told me. ::) They did plasmapheresis and IVIG and even some experimental chemo treatment with my last bout of rejection (the big one) that did absolutely NOTHING to help.
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44% is high but not that high. If you have potential live donors for a paired donation, you have a very good chance of getting a transplant IMO. I am highly sensitized with a 98-99% PRA and A donor became available after about a year on John Hopkins list. The only reason that it didn't happen was that they found a previously urn diagnosed issue with my husband and he couldn't donate.
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If you have potential live donors for a paired donation, you have a very good chance of getting a transplant IMO.
Thank you! I hope you're right.