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Thread: Transplant

  1. #41
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    Default Re: Transplant

    Thanks Pete.
    That's correct. They won't remove either of my kidneys. They usually don't remove kidneys unless they are cancerous, you have polycystic kidney disease, or you already have multiple kidneys from previous transplant.
    Diagnosed April 1995

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  3. #42
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    Default Re: Transplant

    Hey Gilders, This sounds like you are moving along. Only on this site could we all understand what you are saying about the Rituxan, antibiodies, etc. Positive thoughts are being sent your way. Keep us posted.

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  5. #43
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    The transplant looks like it's still on!
    I had a phone call today to say that at the latest meeting, they have decided that I can have the kidney direct from my dad. I checked with the transplant nurse that they had reassessed their thinking that it was Rituximab which was causing the rejection problem. They do now agree with me and my vasculitis specialists that RTX wouldn't be effecting the tissue match tests so long after my last RTX infusion .I.e. it is MY antibodies causing the rejection.
    When they first saw that I had antibodies against my dad they said that they wanted to try and find a swap for a better match, rather than direct from my dad.

    I asked the nurse why they've changed their mind and she said that all she knows is that at the latest meeting they've decided it's worth the risk and I will be having twice as many antirejection drugs.

    I'm a bit in shock. I'm so happy it's happening soon, but have concerns as every tissue match has come back positive for rejection and they previously suggested trying to find a better match.

    I can only pressume they've considered my dad's age, the unlikelyhood of me being able to avoid dialysis and the odds of finding a match in 12 months so slim, that they're really delaying the inevitable direct transplant for no likely gain.

    I really need to try and be positive, but the risks do worry me and after repeatedly getting told it's going to happen then not, I won't believe it until I wake up with 3 kidneys.
    Great news. Thank you for sharing. Sounds like your docs have done some serious consultations and thinking, and are going on the best option.

    You must be SO excited

    Happy Birthday to your wife tomorrow, wishing her the best of gifts, a new kidney for you
    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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  7. #44
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    Default Re: Transplant

    Quote Originally Posted by Alysia View Post
    Great news. Thank you for sharing. Sounds like your docs have done some serious consultations and thinking, and are going on the best option.

    You must be SO excited

    Happy Birthday to your wife tomorrow, wishing her the best of gifts, a new kidney for you
    WOW, you have a great memory, it is my wife's birthday tomorrow!
    She is very happy about the transplant being back on. She's still having the tests that had already been booked, to check that she is fit enough to donate. We've been told too many times before that it's happening, only for them to change their mind.
    Diagnosed April 1995

  8. #45
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    WOW, you have a great memory, it is my wife's birthday tomorrow!
    She is very happy about the transplant being back on. She's still having the tests that had already been booked, to check that she is fit enough to donate. We've been told too many times before that it's happening, only for them to change their mind.
    Do you mean that your wife might be able to donate you a kidney instead of your father ?

    I remember her birthday as it is the same day as my sweetie's. Thank you for remembering his.
    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.

  9. #46
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    Default Re: Transplant

    Quote Originally Posted by Alysia View Post
    Do you mean that your wife might be able to donate you a kidney instead of your father ?

    I remember her birthday as it is the same day as my sweetie's. Thank you for remembering his.
    We have incompatible blood groups and were originally told that the only option would be for my wife to join the paired/pooled swap scheme. She still needs all the same tests as a direct donor would need. During these tests they've discovered that I don't have many antibodies against her. I still have incompatible blood group, of course, but they can try to work around that if everything else is a good match. But this would be as a last resort as incompatible blood donations aren't as successful.

    So as it stands at the moment, my dad is the one that will be donating directly. If this doesn't happen for any reason then my dad and wife will join the pooled donation swap scheme. If no matches/swaps are found for me, then they would look at direct donation from either my dad or wife.

    I am unsure what is riskier as far as rejection - receiving a kidney from my dad who I've already shown antibodies against or my wife who I have less antibodies against, but incompatible blood group??

    It's not a nice consideration, but they have mentioned before than with multiple donors it's often best to chose the oldest donor first as I'll have a better chance of receiving another kidney in the future as there's more of a chance the oldest person would not be fit enough (or passed away) by the time the original kidney I receive has stopped working.
    Diagnosed April 1995

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  11. #47
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    We have incompatible blood groups and were originally told that the only option would be for my wife to join the paired/pooled swap scheme. She still needs all the same tests as a direct donor would need. During these tests they've discovered that I don't have many antibodies against her. I still have incompatible blood group, of course, but they can try to work around that if everything else is a good match. But this would be as a last resort as incompatible blood donations aren't as successful.

    So as it stands at the moment, my dad is the one that will be donating directly. If this doesn't happen for any reason then my dad and wife will join the pooled donation swap scheme. If no matches/swaps are found for me, then they would look at direct donation from either my dad or wife.

    I am unsure what is riskier as far as rejection - receiving a kidney from my dad who I've already shown antibodies against or my wife who I have less antibodies against, but incompatible blood group??

    It's not a nice consideration, but they have mentioned before than with multiple donors it's often best to chose the oldest donor first as I'll have a better chance of receiving another kidney in the future as there's more of a chance the oldest person would not be fit enough (or passed away) by the time the original kidney I receive has stopped working.
    Thank you for explaining, Pete. You have become an expert in kidneys and transplants. I am glad that it might also work with your wife, giving you another option, plan B or so. Praying it will work for the best, this way or another.

    I guess you will soon need to have your suitcase ready....
    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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  13. #48
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    Default Re: Transplant

    Gilders,
    I'm happy for you that your transplant is coming soon. Both of your options sound very complicated. You are a true warrior! May God cover you in this!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  15. #49
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    Default Re: Transplant

    I am due to have a scan (August 18th) around the pelvis area to choose as suitable site for the new kidney. But, as always with me, there's a bit of a problem. The dye used for the scan has a risk of causing damage to kidneys. Usually this isn't a problem as it's a low risk (for healthy kidneys), or people are already on dialysis (the dye will be dialysed out), but for people with very poor function it's risky. I spoke to the radiologist who suggested I check with the dr who requested it, but warned that it may be necessary for the transplant to go ahead.
    My latest blood tests have also shown a drop in function from 13% to 11%.
    Diagnosed April 1995

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  17. #50
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    I am due to have a scan (August 18th) around the pelvis area to choose as suitable site for the new kidney. But, as always with me, there's a bit of a problem. The dye used for the scan has a risk of causing damage to kidneys. Usually this isn't a problem as it's a low risk (for healthy kidneys), or people are already on dialysis (the dye will be dialysed out), but for people with very poor function it's risky. I spoke to the radiologist who suggested I check with the dr who requested it, but warned that it may be necessary for the transplant to go ahead.
    My latest blood tests have also shown a drop in function from 13% to 11%.
    Thanks for the update, Pete. Such a roller coaster... I hope they can find a way to scan you without any risk....
    I keep you allways in my thoughts and prayers ❤
    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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