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Thread: Kidney donors?

  1. #21
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    Gilders and Sangell ,I am sorry you are both having to go through dialysis. I pray that you are both able to find a suitable donor soon.
    Life isn't about how you survive the storm, but how to dance in the rain !

  2. #22
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    Quote Originally Posted by gilders View Post

    My wife is getting blood tests tomorrow to, hopefully, find she's compatible with me.
    She stole my heart......now I get her kidney! That's a fair deal!
    Pete, a friend who read this thread sent me the following link for you:

    Renal transplantation for end-stage renal disease following bone marrow transplantation: a report of six cases, with and without immunosuppression. - PubMed - NCBI
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #23
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    Hi Alysia,
    Thank you and your friend for thinking about me and taking time to post some info.
    At first, I thought it was study to show that there is an improvement with kidney transplants if you also receive a bone marrow transplant from the kidney donor at the same time. But as I read it through I don't think that is the case.
    I have had a bone and bone marrow biopsy, but not a bone marrow transplant (I don't need one).
    It is good to see 5 out of 6 were still alive up to 31 months. I guess I'm being greedy but I want to live much longer than a few years.

    I'm learning more each day about dialysis (even though I was on it for a few weeks 20 years ago) and although this is a Wegener's forum I'm happy to answer any questions about dialysis. If I don't know the answer and I'm happy to find out as I want to increase my knowledge and to be prepared. Likewise, if anyone has any experience/advice I'd be happy to hear. Obviously, my main concern is choosing the best dialysis for me. Dialysis at home, through the night sounds the best in theory. But in reality, if it prevents me from sleeping then during the day I will feel terrible. The other extreme is dialysis 4-5 times/day, every day.
    Diagnosed April 1995

  4. #24
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    Quote Originally Posted by gilders View Post
    Hi Alysia,
    Thank you and your friend for thinking about me and taking time to post some info.
    At first, I thought it was study to show that there is an improvement with kidney transplants if you also receive a bone marrow transplant from the kidney donor at the same time. But as I read it through I don't think that is the case.
    I have had a bone and bone marrow biopsy, but not a bone marrow transplant (I don't need one).
    It is good to see 5 out of 6 were still alive up to 31 months. I guess I'm being greedy but I want to live much longer than a few years.

    I'm learning more each day about dialysis (even though I was on it for a few weeks 20 years ago) and although this is a Wegener's forum I'm happy to answer any questions about dialysis. If I don't know the answer and I'm happy to find out as I want to increase my knowledge and to be prepared. Likewise, if anyone has any experience/advice I'd be happy to hear. Obviously, my main concern is choosing the best dialysis for me. Dialysis at home, through the night sounds the best in theory. But in reality, if it prevents me from sleeping then during the day I will feel terrible. The other extreme is dialysis 4-5 times/day, every day.
    Dear Pete. My friend sent the link for the idea that transplant of bone marrow can help with the kidney transplant.
    Your offer about dialysis is very kind. Maybe it will be good to open a new thread under the title of dialysis.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #25
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    Quote Originally Posted by Alysia View Post
    Dear Pete. My friend sent the link for the idea that transplant of bone marrow can help with the kidney transplant.
    Your offer about dialysis is very kind. Maybe it will be good to open a new thread under the title of dialysis.
    I think your friend could be right after all. It was the first sentence that confused me, "Over 12000 bone marrow transplantations (BMT) are performed in the USA each year. This procedure is associated with significant morbidity including acute and chronic renal failure (CRF)". I read that as bone marrow transplants cause problems such as renal failure.
    The study didn't actually say that the patients whom had bone marrow transplant had it for the sole purpose of helping to reduce kidney transplant rejection, but I think that must be the case as I've found other information regarding bone marrow transplant to help with kidney transplant. So thank you for bringing it to my attention.

    From what I've read elsewhere the theory is good, but there is not enough long term evidence as it is a new idea. Patient are often still given immunosuppression drugs, so this also makes it hard to distinguish if it's the drugs or the marrow transplant that is helping prevent rejection.
    Last edited by gilders; 04-23-2016 at 08:38 PM. Reason: Spelling
    Diagnosed April 1995

  6. #26
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    Isn't bone marrow transplant often used to treat many blood cancers? That might be a higher number. I knew of one women who asked about it as possible treatment for her lymphoma and was told she was not appropriate because of high risk of mortality from the procedure. And her prognosis from her cancer was not likely to be terminal for several years.
    Knowledge is power! Wisdom is using it to make good decisions!

  7. #27
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    Quote Originally Posted by drz View Post
    Isn't bone marrow transplant often used to treat many blood cancers? That might be a higher number. I knew of one women who asked about it as possible treatment for her lymphoma and was told she was not appropriate because of high risk of mortality from the procedure. And her prognosis from her cancer was not likely to be terminal for several years.
    I know almost nothing about this issue. I think that you are right. Thanks for the input.
    Pete will still have time to check with his docs if kidney's transplant is more safe with bone marrow transplant (to reduce risk of rejection) or without it (not to add unnecessary risk). Tough decisions to make...
    When I was with Phil in the hospital, I had a neighbour in the hostel where I slept, whose husband had a kidney transplant at that time. Without bone marrow transplant, I think. It was totally amazing how fast he recovered and went home, as good as new.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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