I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Sunny on January 26, 2010, 02:31:53 PM
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I have posted about my oldest sister before.
Last month she told me she wanted to test again to donate a kidney to me. She had been approved 6 years ago by Stanford but then my kidneys rallied one more time for me. Now that I am at GFR 14% I am back to thinking about living donors again. My dilemma was that I needed this sister to either step up again, or take herself out of the running so that other family members might possibly come forward. She is still willing to come forward to be my donor if approved. So we have started the process again. Last month we both had our blood drawn for cross-matching and as we all know, that's just the beginning of the journey. As for whether she is healthy enough, we both agreed to let the doctors decide. ( She's 58 years old with controlled high blood pressure on one blood pressure medication). We shall see!
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It is always good to start the process. I am excited your sister is again willing to donate. Can your center test several potential donors at the same time? My kids all went through the process during the same time period. Then if your sister can't donate, another family member may already be tested and ready to go. Just a thought. (you know this process so well!) I always follow your story because I relate to it so much. I will be watching and crossing fingers all the testing goes very well. :2thumbsup;
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Best wishes, Sunny.
Our center will only do one donor at a time.
I hope she can carry this forward all the way.... :cheer:
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Good Luck in either situation Sunny. Either with your sister or another family member coming forward to help.
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Best wishes, Sunny.
Our center will only do one donor at a time.
I hope she can carry this forward all the way.... :cheer:
Interesting how the centers are all so different. Two of mine did all the initial blood work, social worker evaluations and general physicals of my children and another volunteer at the same time. Got the easy part out of the way and didn't waste too much time going from one person to the next. Didn't work out----but at least they were efficient! :rofl; I think yours will work out beautifully, Sunny!
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Thank you all for your well wishes.
I've never asked about more than one donor being tested at the same time beyond an initial blood test to see if the blood matches.
She was a little surprised about having to have all the tests repeated because she thought what was done 6 years ago ought to qualify her.
But I told the transplant coordinator that if she was going to be my donor I wanted her tested thoroughly again and they explained they absolutely would need to. I'll let you know how it goes.
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What a lovely sister. Hopefully it won't take too long!!
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Today my sister and I found out we are a perfect 11 point match.
In addition to the 6 point match, they also tested additional markers and we were perfect in all 11 tested. Then they tested it twice to make sure! I have PRA's of 91%, but because we are such a good match, I wouldn't even need IVIG treatment. Yaaaaay! Additionally, being an 11 point match might make me eligible for a stem cell "tolerance induction" therapy study Stanford is doing using stem cells from donor's blood.
Now the bad news:
Stanford tells me my GFR needs to be at 14% or lower consistently to get transplanted.They told my sister they were stopping the rest of her physical health tests because they wouldn't transplant me now since my GFR hovers around 13-16%. It's enough to make me crazy. What difference does a few GFR points make? I still feel absolutely crappy regardless. My body can't tell the difference.
Solution:
Next week I have an appointment to see my transplant doctor for my "Annual". I will present my case that I would like a transplant within the next year should my donor sister pass all of her physicals. I don't want to pass up this opportunity. I will never get a cadaver transplant with an 11 point match, miracles like that just don't happen. My sister is 58 years old, by the time Stanford deems me ready for a transplant, they might deem her too old.
What should I do? Am I jumping the gun regarding wanting a transplant?
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I was reading about Stanford:
The hot topic at this year’s meeting of the American Transplant Congress was how to control antibodies, Tyan said. But she added that the “holy grail” of transplantation remains tolerance. “That’s ‘true’ tolerance, which means, ‘I’m not taking any meds and my [transplanted] organ is working fine.’”
Stanford and Harvard University currently are the only two academic medical centers in the United States that have active clinical tolerance-induction protocols. Ten transplanted patients at Stanford are enrolled in an NIH-funded clinical trial, directed by Samuel Strober, MD, professor of immunology and rheumatology, to wean them off immunosuppressant medications. “It draws a lot of interest from patients because the appeal of having to take no drugs is tremendous,” Scandling said about the study, while noting that the experimental therapy is a long way from becoming routine care.
from http://med.stanford.edu/ism/2009/august/kidney-0812.html
Interesting program.
Sunny, what is your creatinine now? How long have you been hovering at your current GFR range?
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I would like to understand their reasoning. Why not go ahead with the pre-emptive transplant while everyone is in a good spot? You could suddenly have a huge drop in function, you sister could be in a accident----it doesn't make sense not to trasnsplant. Now seems the perfect time. Let us know when you learn more. Wish the centers were all on the same page so we all knew the rules. Keep asking them questions. Good luck :cuddle;
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My center will also only do one donor at a time. Personally, I think they could at least do the blood work on all donors interested. If the blood comes back as no match, then that person would be bumped. But, no. That's not how they do it either. My first donor tested in Feb 2008 and was declined in early March. My 2nd donor tested in early April and was denied in early Man, and my 3rd donor tested in late May and by middle of June we were still waiting for an answer. We found out he was declined in late June or early July. My 4th and final donor :thumbup; was tested in August and we were told at the end of Sept to "pick a date for transplant". :clap;
The only reason I was frustrated with the time between testing was because I was trying to stay off dialysis, but they weren't that concerned, even though no dialysis is always best. Go figure. You'd think because I wasn't on dialysis that my insurance would have said "test any and all donors ASAP" so that they wouldn't have to put forth the money for dialysis AND for testing donors. ???
Good Luck with the second testing of your Sister. She's a hero for sure!
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Yes, my sister is my hero.
I have always felt lucky to have her, I just never guessed to what extent our lives would be bound together.
She is my oldest sister of five sisters and I also have four brothers, ten kids in all.
My GFR has been about 15 % functioning for two years. It fluctuates as low as 13% (November 2009) and is currently 16%. My nephrologist says statistically my kidneys will fail within the year. I have been told this for two years now. Six years ago this sister was approved and we were scheduled for transplant, but then my kidney function rebounded to 33%. In the beginning I was naive enough to think maybe my kidneys would last forever.Now I realize that was magical thinking and sometimes I wish my kidneys would just get it over with and fail low enough for me to qualify for a transplant or dialysis.
I will let you know how my transplant "annual" goes.
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I had my transplant appointment.
The doctor takes the position I have another 1 to 2 years left in my kidneys considering I am at 15% GFR.
I pointed out that since my sister is a perfect match and that means her kidney has a transplanted half life of 18 years, then I see no reason to wait any longer if she passes all of her physical exams. I explained that she and I would like to just proceed, get it over with, and that way we can both get on with life.I also told him I feel lousy all the time and what is the point of feeling this way if I have a donor. I also asked if I could be in the Tolerance Induction study which would use stem cells from my sister donor with the hope of weaning me from immunosuppressives altogether.
http://transplantstudies.stanford.edu/
The doctor will review my sisters medical file and mine, and check into it. So I remain positive and hopeful.
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The Tolerance Induction study sounds interesting and promising. Positive and hopeful are a very good combo indeed.