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Thread: Transplant

  1. #21
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    Default Re: Transplant

    Dear Pete,
    I am sorry it takes SO long. Stay strong. I think that they do it this way in order to make sure that they afford you the best possibility. Time will tell. Is there a way to publish your search for a kidney ? In newspapers or on the internet or maybe in a TV show ? We have a weggie friend on facebook from UK who was in the TV show "a year later" first with her bad saddle nose and then with her new nose. I can ask her if you will want me to, to see if she can help through that TV show or similar.
    Keeping you in my daily prayers. Dr. Phil is also praying for you from his good place in the presence of Our Lord ❤
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

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  3. #22
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    Default Re: Transplant

    Hi Alysia,
    I saw the TV episode about the lady with the new nose. It's available on ITV's catch up service in the UK. Others may be able to watch it if using a VPN.
    I'm not looking for a deceased donor, at least for the time being. There is only one paired/pooled organ donor exchange scheme in the UK, so if there are other people in my situation, they'll already be on the scheme.
    I can increase my chances of getting a match by having more people offer their kidney for a swap. But I can't bring myself to ask anyone. My friends and family know I need a kidney, so if they wanted to offer me one, they would have already. I don't want to put people in a position where they feel awkward saying "no" or say "yes" when they'd rather not want to.
    I could try and "advertise" my need for a kidney, but I'm no more special or deserving of one than all the other people waiting.

    If l finally give in and start dialysis (like some of the drs think I should), I may have a different view and try harder for transplantation.
    Diagnosed April 1995

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  5. #23
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    Hi Alysia,
    I saw the TV episode about the lady with the new nose. It's available on ITV's catch up service in the UK. Others may be able to watch it if using a VPN.
    I'm not looking for a deceased donor, at least for the time being. There is only one paired/pooled organ donor exchange scheme in the UK, so if there are other people in my situation, they'll already be on the scheme.
    I can increase my chances of getting a match by having more people offer their kidney for a swap. But I can't bring myself to ask anyone. My friends and family know I need a kidney, so if they wanted to offer me one, they would have already. I don't want to put people in a position where they feel awkward saying "no" or say "yes" when they'd rather not want to.
    I could try and "advertise" my need for a kidney, but I'm no more special or deserving of one than all the other people waiting.

    If l finally give in and start dialysis (like some of the drs think I should), I may have a different view and try harder for transplantation.
    I understand what you mean and I admire your courage and strength. Hang in there. You are embraced by many prayers.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

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  7. #24
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    Default Re: Transplant

    UPDATE
    I finally got to see the transplant dr at ST. James, Leeds UK (where the actual operation will take place) on Thursday. I was expecting this to be his opportunity to tell me why they decided to cancel the straight donation with my dad and try and get a match in the paired/pooled donation scheme.
    I was ready prepared with my concerns over waiting for a match that was highly unlikely to happen. I didn't have to voice my concerns though as the dr has decided that my dad can directly donate to me after all
    The dr explained that the antibodies I have against my dad shouldn't be too much of a problem. They were very surprised when my blood was mixed with my dad's and there was a severe reaction. But, apparently, they hadn't realised I had had Rituximab. The team now believes that the reaction was caused by Rituximab and not my antibodies that I have. Therefore the transplant can go ahead. I would have been given a date there and then for the operation for the end of July, but they just want haematology to do a final check on my bleeding problem, but the transplant would be completed before the end of summer.
    The news just kept getting better and better.... they aimed to have my dad in and out of hospital within 24hrs and me within 5 days! One of the best pieces of news was that I wouldn't need to be on long term steroids after the operation, which I was expecting.

    Less than 24 hours later EVERYTHING changed.
    I had an appointment the next morning at another hospital that deals with my vasculitis. This hospital has the best experts for most things, but especially vasculitis and drugs such as Rituximab. The Dr at this hospital said that as the tissue match test was performed more than 3 months (almost 12) after my last RTX infusion, there is no way that RTX could be "killing" my dad's cells. I.e. the reason the other hospital gave for allowing the transplant to go ahead, is invalid.
    My only hope now is that the hospital in Leeds tried to simplify things, or did a bad job of describing the issue with Rituximab "killing" my dad's cells. But it really doesn't look like the transplant will be going ahead. I'm just going to have to wait AGAIN to find out if it's happening again.

    As if things couldn't get any worse, the Dr isn't sure if I may be at the start of another relapse. I have to have been in remission for at least 2 years before I can have a transplant, so realistically, if I'm relapsing, it will be at least 3 years before I could look at getting a transplant. Not only that, but another relapse will completely finish my kidney function. I've been refusing dialysis for over a year now, but any further drop in function and I'll have to give in.

    The dr explained that most patients that have a few doses of RTX don't start producing B cells again for over 2 years. Apparently my blood tests from last December (less than 12 months from last RTX infusion) already showed B cells.
    My ANCA is negative, but my nose is bad at the moment.
    Diagnosed April 1995

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  9. #25
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    UPDATE
    I finally got to see the transplant dr at ST. James, Leeds UK (where the actual operation will take place) on Thursday. I was expecting this to be his opportunity to tell me why they decided to cancel the straight donation with my dad and try and get a match in the paired/pooled donation scheme.
    I was ready prepared with my concerns over waiting for a match that was highly unlikely to happen. I didn't have to voice my concerns though as the dr has decided that my dad can directly donate to me after all
    The dr explained that the antibodies I have against my dad shouldn't be too much of a problem. They were very surprised when my blood was mixed with my dad's and there was a severe reaction. But, apparently, they hadn't realised I had had Rituximab. The team now believes that the reaction was caused by Rituximab and not my antibodies that I have. Therefore the transplant can go ahead. I would have been given a date there and then for the operation for the end of July, but they just want haematology to do a final check on my bleeding problem, but the transplant would be completed before the end of summer.
    The news just kept getting better and better.... they aimed to have my dad in and out of hospital within 24hrs and me within 5 days! One of the best pieces of news was that I wouldn't need to be on long term steroids after the operation, which I was expecting.

    Less than 24 hours later EVERYTHING changed.
    I had an appointment the next morning at another hospital that deals with my vasculitis. This hospital has the best experts for most things, but especially vasculitis and drugs such as Rituximab. The Dr at this hospital said that as the tissue match test was performed more than 3 months (almost 12) after my last RTX infusion, there is no way that RTX could be "killing" my dad's cells. I.e. the reason the other hospital gave for allowing the transplant to go ahead, is invalid.
    My only hope now is that the hospital in Leeds tried to simplify things, or did a bad job of describing the issue with Rituximab "killing" my dad's cells. But it really doesn't look like the transplant will be going ahead. I'm just going to have to wait AGAIN to find out if it's happening again.

    As if things couldn't get any worse, the Dr isn't sure if I may be at the start of another relapse. I have to have been in remission for at least 2 years before I can have a transplant, so realistically, if I'm relapsing, it will be at least 3 years before I could look at getting a transplant. Not only that, but another relapse will completely finish my kidney function. I've been refusing dialysis for over a year now, but any further drop in function and I'll have to give in.

    The dr explained that most patients that have a few doses of RTX don't start producing B cells again for over 2 years. Apparently my blood tests from last December (less than 12 months from last RTX infusion) already showed B cells.
    My ANCA is negative, but my nose is bad at the moment.
    Oh Gliders,I am so sorry! As I was reading your thread I felt excitement for you then sadness and heartache. I truely hope you are not relapsing and maybe your sinus issues are a change in the weather? I will be thinking of you and sending you virtual hugs and positive thoughts!
    Natty


    Sent from my iPhone using Tapatalk

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  11. #26
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    Default Re: Transplant

    Hi Natty and thanks.
    I think the nose problems are probably permanent vasculitis damage and perhaps a bit of an infection. I can usually "feel" it when I'm having a relapse quite early on.

    I just hope that there was some sort of misunderstanding with the explanation of why my dad's cells were being killed by RTX rather than my antibodies.
    Diagnosed April 1995

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  13. #27
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    Hi Natty and thanks.
    I think the nose problems are probably permanent vasculitis damage and perhaps a bit of an infection. I can usually "feel" it when I'm having a relapse quite early on.

    I just hope that there was some sort of misunderstanding with the explanation of why my dad's cells were being killed by RTX rather than my antibodies.
    Hard news. Hopefully is misunderstanding.


    Sent from my iPhone using Tapatalk

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  15. #28
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    Default Re: Transplant

    Hi Pete,

    Words have escaped me as I read your post. I’m sorry and saddened. I hope it will all be better in time.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  17. #29
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    Default Re: Transplant

    I am sorry and sad about your situation.
    Knowledge is power! Wisdom is using it to make good decisions!

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  19. #30
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    Default Re: Transplant

    Gilders thoughts are with you, it's so tough having the excitement of a solution that does not work out the way you intended.

    Ben

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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