I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: boxman55 on January 27, 2008, 03:30:15 PM
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My sister started the testing process to donate a kidney to me but was told that because she had an auto immune disease ( Crohn's ) with the last episode occurring in 1976 that she was disqualified. Other then this she would have been a perfect match. Is that being a little to cautious or is that just the way it is. I can't tell you all how this sucks...Boxman (Crohn's is a small intestine disease that is treated with steriods)
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That does suck boxman... sorry to hear that! Hope they weren't getting your hopes up and then at the last minute let you down. Or did they just say no from the get go seeign her history?
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That is crazy! I would demand a second opinion. I would write to UNOS (United Network for Organ Sharing). http://www.unos.org/
That is just nuts! :urcrazy;
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Wow that's hard to imagination that they would rule her out over something that appears to be inactive. I don't know anything about Chron's. I am so sorry to hear this Boxman. :cuddle;
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inevitably you let yourself think, even a little that this my chance, then they pull the rug from under you, bloody well sucks big time.
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inevitably you let yourself think, even a little that this my chance, then they pull the rug from under you, bloody well sucks big time.
ya it does, Ang. I will be calling a transplant team in another city to see what they say. I mean come on... something that has been dormant for over 25 years. My sister is very disappointed also, and is willing to try anything...Boxman
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Boxman, I am so sorry. Those of us who have had potential donors disqualified understand the pain and disappointment. One of my sons is a 5 of 6 antigen match but they disqualified him because they determined he was pre-diabetic with a blood sugar level of 99 (which is usually considered good). This was done at Johns Hopkins with their plasmapheresis program. Another son was turned down because he needs to lose 20 pounds. Three more tested and ruled out. It is so frustrating. I really hate that this has happened and I share your disappointment. :cuddle; Sometimes it is hard to keep hope alive. Sending lots of good energy and loving thoughts to you :cuddle; :cuddle;
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Boxman I am so sorry to hear this, :( I just went through the same thing myself, its so hard not to get your hopes up .
Kim :grouphug;
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Boxman that sucks, we have crohns in my family and it can "pop" up at any time so they probably just are being really careful but I would ask for a 2nd opinion, good luck we have learned evertime someone gets tested we tell ourselves there not gonna match so that way we're not disappointed so much Otto's had over a dozen turned down for diffrent reasons HANG IN THERE IT WILL HAPPEN 2008 IS IHD"S YEAR :cuddle;
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All auto-immune diseases arise from the same type of error in the immune system, which is a tendency of the killer-cells and the lymphocytes to over-react whenever there is any kind of stress or infection operating on the body. It is quite common for people to have more than one auto-immune disease, all stemming from this same lack of control in the immune system, due to a genetic error in the design of the system. Since some auto-immune diseases, many of which can damage the kidneys, are statistically closely associated with Crohn's Disease, it is only sensible to refuse to take a kidney from a person with that susceptibility, who may well someday need all the reserve nephrons possible to withstand a further auto-immune attack -- this time not directed against the intestine but instead against the kidneys. Crohn's Disease is also statistically highly associated with auto-immune diabetes, which is itself a major risk to renal function.
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thank you all for your kind words and stauffenberg for your insight even though it's not what I wanted to hear...Boxman
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I'm sorry Boxman.
I know you must be disappointed.
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Boxman, I'm so very sorry to hear this. I know very little about Crohn's, but the one person I know who has it (who also has some type of CKD), seems to have attacks pretty frequently - like every couple of months - I would think that after 25 years, you wouldn't be considered to have it anymore. Again, I don't know much about it, but I'd be getting a second opinion as well. Best of luck with it.
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:cuddle; Sorry to hear this. Hopefully a 2nd opinion will turn out with better news. Good Luck!
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So sorry Boxman. Another kick in the teeth. Don't give up tho, get another opinion. Your day will come.
Mimi
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Sorry Boxman. Keep trying. I don't know how many times people have been rejected at one place only to be accepted somewhere else. :grouphug;
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:grouphug;
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hang in there boxman. :grouphug;
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Sorry to hear it Box
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I'm sorry to hear that boxman...
I am hoping a donor will become available soon. :cuddle;
Amanda
xxoo
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Hope you get another chance with your sister another way or the phone rings real quick for ya
Tamara :cuddle;
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That sucks man...I'm so sorry. To finally have someone who is willing to do something this important and then told they can not do it is a hard pill to swallow. I hope someone comes forward soon ... hang in there buddy. :grouphug;
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This is the e-mail my sister sent out to family and friends.
Hi Everyone,
It is with great sadness that I share with you the recent notification that Mark's transplant team has turned me down as a living donor for a kidney transplant. After sending them all of my pertinent medical records, the only thing that ruled me out was that I have a history of Crohn's disease. Since it is an auto-immune disease that has the possibility of being chronic ( I am fortunate not to have suffered an episode for 27 years) they will not let me donate my kidney. I am deeply disappointed. Apparently, some of the treatment that they use for Chrohn's disease can be hard on kidneys ( longer periods of prednisone and antibiotic treatment). They will not consider the fact that I only had 3 episodes from 1976 until 1981 and have not had a single recurrence for the last 27 years. They are extremely tough in their protection of the donor.
While I was procuring information on what would eliminate one as a candidate, I found out that there are several illness or conditions that would prevent one's ability to be a living donor for the Froehdert Transplant Team (Marks transplant team of Doctors)
1.Diabetes
2.Impaired Glucose Tolerance Test
3.High Blood Pressure
4.Kidney Disease
5.Heart Disease
6.Auto-Immune disease (such as Crohn's, Irritable Bowel,Lupus, etc)
7.Smoker
8.Cancer
Please continue to pray for Mark. I know this is very difficult for all of us, but it is especially difficult for him.
Love, Lynn
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:cuddle; :cuddle; :cuddle; Extra hugs for your sister.
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Boxman, I'm so sorry to hear this. :grouphug;
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Hugs and prayers for you and your sister. This sucks bigtime! Maybe you could go through a different facility???? :cuddle;
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Sometimes the path is not clear, but that doesn't mean it's not the right way to go. It's just not always the results we expected. As disappointing as the denial of being a donor is, consider the negative impact it could have on the recipient if the donor had problems subsequent. If someone is prevented from being a donor, here's an example of how they can strive to assist in other ways. Success at transplantation requires a lot more than a donor. Your sister has already made a difference created through her offer and testing. Ultimately her efforts may lead to another donor.
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You are so right Okarol, for a while there was no discussion now e-mails are being sent, and phone calls are being made. My sister was more disappointed then I was, I had the IHD insight to cushion the blow...Boxman
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Hopefully the email your sister sent out will get more people in your respective circles to consider being tested. Sounds like it may have worked, if there is more discussion about it now. I'm sorry you're both having to go through this. :cuddle;
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What a nice letter your sister wrote. :cuddle;
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Tell your sister that we loved her letter. Very well written :thumbup;
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The fact that she tried is so wonderful! :cuddle; to your sister!
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Sorry to hear this disappointing news, but you must be very proud of Lynn for tryinf and she must love you a great deal to offer.
Big love to both of you :cuddle;
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The fact that she tried is so wonderful! :cuddle; to your sister!
I agree. :cuddle; for Lynn :cuddle; for Boxman
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:grouphug;
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Sorry your sister didn't qualify. That is a very touching E-mail she sent out and hopefully it will raise awareness of your needs to others.
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So, so sorry to read this, Boxman!
I would definitely look into trying another
transplant center, to get their opinion
Anne
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I'm so sorry, Boxman! Marvin had to go through this several times. The worst time was with MY sister -- she went through all the testing -- about four months. She was at the final test when they disqualified her. She called Marvin and started crying, and he ended up comforting HER !! Even though it's tough to swallow, we had to think that it happened for a reason. If my sister had donated to Marvin and then something had happened to her remaining kidney, Marvin would have never forgiven himself -- even though he would have not been at fault.
Love that sister, Boxman! She's a gem -- just like mine!
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Boxman- having lived through the nightmare of having living donors rejected during my path to a transplant - I will tell you that I found out that most of the transplant centers get federal funding for the transplants and the centers need to keep their success rate very high so the money continues to flow. That is one of the major reasons they are pretty darn picky about chosing live donors. Both my husband and daughter were rejected. However, I was lucky enough to have a dear friend donate.
Hang in there - I'm sure things will work out.
Take care
Sandyb
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I'm so sorry your sister was turned down, Boxman. What an awful disappointment. Her letter was great -- her love for you is clear and strong. I'm hoping this leads someone else to take the plunge...
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Boxman,
Praying things will work out for you.
Lori/Indiana
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Boxman.. I know your pain since my sister was also disqualified as a donor last year and it was pretty rough. I guess though you have to remember that they need to protect the donor's health as much as the potential recipient... and so they wanted to do the right thing by her as much as you. I had a similar issue with my sister (in her case it was her slightly elevated BP.. despite the fact she was willing to go ahead despite that they wouldn't allow it). In a way I'm kind of happy for that because if something had happened to her down the track that could be pointed to as a result of the transplant I'd never forgive myself for taking that organ and causing something bad for her...
... so now I wait for the call!