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Thread: Transplant

  1. #11
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    Default Re: Transplant

    Well that sure does suck

    My fingers will be crossed for you to have an amazing 2018 with everything finally falling in place
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  3. #12
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    Default Re: Transplant

    Quote Originally Posted by NatriceRomeo View Post
    I was wondering about the anti-rejection drugs. Do you know what they will prescribe? I’m just wondering because I know imuran is sometimes used & it would be nice (though I understand that it sucks since your in a drug free remission right now) to “kill two birds with one stone” as they say??
    Thanks Natty.
    Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

    I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.
    Diagnosed April 1995

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  5. #13
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    Thanks Natty.
    Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

    I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.
    Thank you Gliders,
    I truely hope the transplant medications work as well as control WG. I was on Aza and it stopped working for me as well. I tried mycophenolate but it never worked. I hope it does wonders for you! Good luck!
    Natty


    Sent from my iPhone using Tapatalk

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  7. #14
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    Default Re: Transplant

    Thanks for the update, Pete. That's a long long time of waiting.... All you can do is breath deeply and pray. You are in God's hands and he loves you.
    I know few weggies who are on cellcept, which should be as good as aza or mtx.
    Hang in there and please update us. 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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  9. #15
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    Default Re: Transplant

    I'm wishing you all the best for a speedy and successful transplant.��
    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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  11. #16
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    Default Re: Transplant

    I'm back again with another update and as usual, it's not good news
    I was told in December that the transplant would happen around the end of January. Then last month I was told it would be around July.
    All my investigative work and my father's (the donor) was sent to the hospital that would be performing the procedure, in preparation for the July date. The transplant team at this hospital has said that due to me having antibodies against my father they don't want to do the transplant at this point. They want my father to offer his kidney for the paired/pooled kidney exchange program (he would swap his kidney for someone who is a better match for me). The matching takes place 4 times a year (July, October, January, April). They want to have 4 attempts and if I don't get a match by July 2019, they will look at a straight donation from my father.

    I agree that a close match is the preferred option and that is why when I found out that I had antibodies against my father (at the end of last year), I asked if it would be best to join the paired/pooled exchange program. My local transplant dr said that a straight donation from my dad was the best choice as I have so many antibodies (due to previous blood transfusions) that finding a match with someone on the paired/pooled program would be virtually impossible.

    I do not know if the drs at the hospital where I am due to have the operation have considered my situation fully. My kidney function looks quite stable at the moment and this is a reason they are using for having me wait 15 months, but my function tends to have dramatic drops, rather than a steady deterioration. The next dramatic drop could be at anytime.
    Not only that, but if my Wegener's flares up during this 15 month wait, then the transplant will get cancelled until 2 years after achieving remission.

    If they have taken everything in to consideration and still believe that having 4 attempts at a swap will be the best option, then I'm happy with that (although I wish they would have done this 2 years ago when this journey first began).

    My wife has also offered to join the paired/pooled swap. We went today to get her signed up and double my chances.
    The crazy thing is that after been told 2 years ago that we were blood group incompatible, they are now looking at working around this and having her donate direct to me. This is still unlikely though as I need to have a close matching tissue type and no antibodies against her.

    I will now be getting my hopes up every 3 months in case there's a match.

    I can't wait until the day that I can write an update with positive news.
    At least if anyone else on the forum has questions about the transplant process I'm now in a position to answer questions, as I seem to have gone done every different route towards gaining a transplant.
    Diagnosed April 1995

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  13. #17
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    I'm back again with another update and as usual, it's not good news
    I was told in December that the transplant would happen around the end of January. Then last month I was told it would be around July.
    All my investigative work and my father's (the donor) was sent to the hospital that would be performing the procedure, in preparation for the July date. The transplant team at this hospital has said that due to me having antibodies against my father they don't want to do the transplant at this point. They want my father to offer his kidney for the paired/pooled kidney exchange program (he would swap his kidney for someone who is a better match for me). The matching takes place 4 times a year (July, October, January, April). They want to have 4 attempts and if I don't get a match by July 2019, they will look at a straight donation from my father.

    I agree that a close match is the preferred option and that is why when I found out that I had antibodies against my father (at the end of last year), I asked if it would be best to join the paired/pooled exchange program. My local transplant dr said that a straight donation from my dad was the best choice as I have so many antibodies (due to previous blood transfusions) that finding a match with someone on the paired/pooled program would be virtually impossible.

    I do not know if the drs at the hospital where I am due to have the operation have considered my situation fully. My kidney function looks quite stable at the moment and this is a reason they are using for having me wait 15 months, but my function tends to have dramatic drops, rather than a steady deterioration. The next dramatic drop could be at anytime.
    Not only that, but if my Wegener's flares up during this 15 month wait, then the transplant will get cancelled until 2 years after achieving remission.

    If they have taken everything in to consideration and still believe that having 4 attempts at a swap will be the best option, then I'm happy with that (although I wish they would have done this 2 years ago when this journey first began).

    My wife has also offered to join the paired/pooled swap. We went today to get her signed up and double my chances.
    The crazy thing is that after been told 2 years ago that we were blood group incompatible, they are now looking at working around this and having her donate direct to me. This is still unlikely though as I need to have a close matching tissue type and no antibodies against her.

    I will now be getting my hopes up every 3 months in case there's a match.

    I can't wait until the day that I can write an update with positive news.
    At least if anyone else on the forum has questions about the transplant process I'm now in a position to answer questions, as I seem to have gone done every different route towards gaining a transplant.
    Oh Gliders! I’m so sorry! I will be thinking of you and hoping for a speedy match.
    Natty


    Sent from my iPhone using Tapatalk

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  15. #18
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    Default Re: Transplant

    It sounds like a difficult and frustrating procedure. I have read about people getting transplants from pigs and also the progress on artificail kidneys seems closer every day. I know one person who had several organs done in one transplant and is doing fine years later. I have friends that do the home dialysis every night at home and they have had no problems yet.

    Sorry, you are having to deal with this stress and hope some good resolutions appears for you shortly.
    Knowledge is power! Wisdom is using it to make good decisions!

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  17. #19
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    Default Re: Transplant

    Gilders, I am putting you on my prayer list. You are going through such an ordeal and so much time waiting for answers. This sounds like stress added to stress. I worked with a girl who was years in the waiting for her transplant, but finally it happened and now twenty years after the fact and she is doing great! This is what I wish for you. Keep your chin up and stay positive. Masha

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  19. #20
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    Default Re: Transplant

    Gliders,
    I'm so sorry that it has been such a
    grueling process, for you. I don't know what I would do in your situation. Please take good care of yourself and I pray that they come up with a good transplant plan soon!💜
    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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