User Tag List

Likes Likes:  123
Page 4 of 5 FirstFirst ... 2345 LastLast
Results 31 to 40 of 50

Thread: Transplant

  1. #31
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    62
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Gilders, I cannot put into words how sorry I am that you are going through this treacherous roller coaster ride. Such positive hopeful news to be followed with a major let down had to be a hard pill to swallow. My husband and I are wishing, hoping and praying that somehow there will be a more expeditious way to solve your situation. Please, keep all of us posted on your status.
    Masha

  2. Likes gilders, Jaha liked this post
  3. #32
    Join Date
    Dec 2013
    Location
    Mobile, Alabama
    Posts
    256
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Gliders, my heart is broken for you. I'm so sorry, and sending thoughts and prayers....miracles still happen, I'm praying for one for you. Blessings, Lilly
    Life is a Gift~ Lilly

  4. Likes gilders, Jaha liked this post
  5. #33
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    3,843
    Post Thanks / Like
    Mentioned
    15 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Dear Pete,
    My heart is going out to you... keep on fighting in all ways.
    Can the 2 clinics make a consultation about you, maybe together with some experts who understand how rtx works, in order to come to agreement what would be the best for you ?
    How is your nose so far ?
    Keeping you allways in my 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.

  6. Likes BenHornsby, Jaha liked this post
  7. #34
    Join Date
    Sep 2013
    Location
    England
    Posts
    645
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Hi Alysia,
    The RTX experts are consulting with their transplant team. Then hopefully, they'll contact my transplant team and decide what is now happening.

    I was prescribed some antibiotics and my nose is a little better I'm quite certain that it's a slight infection on an already delicate, permanently damaged nose, rather than a relapse. I think the reoccurrence of B cells is RTX losing it's effectiveness quicker than expected, rather than me relapsing.

    Hope you are well.
    Diagnosed April 1995

  8. Likes Alysia, Jaha liked this post
  9. #35
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    62
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Hey Gilders,
    Haven’t had an update from you in a while. Hope this means no news is good news. You are in my prayers.
    Masha

  10. Likes gilders liked this post
  11. #36
    Join Date
    Sep 2013
    Location
    England
    Posts
    645
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Hi Masha,

    As far as the slight worry that I maybe relapsing, I'm certain there's no relapse.

    I haven't done an update as nobody is telling me what is happening. I'm hoping my phone calls to the various hospitals have got them talking to each other.

    I did get the results from the latest cross match and it was the same, i.e. my antibodies attacking my dad. But on the results it mentioned that the reaction could be to do with something external. I presume the "something external " is Rituximab, but the other hospital doesn't see how it would effect the results, now 18 months since my last RTX infusion.

    I now think it's highly unlikely to happen with my dad.
    I'm also thinking that I won't be able to refuse dialysis for much longer, each day is getting harder to just get out of bed.
    It's frustrating that one hospital first brought up transplant and dialysis in October 2015, it took 13 months to get an appointment with the transplant team, a further 13 months to say the transplant will be going ahead and a further 6 months of yes/no decisions about it.
    Diagnosed April 1995

  12. #37
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,016
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    @gilders

    Hang in there buddy!! There’s gotta be a good way forward for you!!
    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

  13. Likes gilders liked this post
  14. #38
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    62
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Oh, geez, Gilders, I don’t know what is worse your physical weakness or emotional frustration. You have been through so much for so long. I have no right to complain about my Wegeners when I know what is going on in your life. I will continue to pray that everything reaches a positive resolution for you very soon.
    Masha

  15. Likes gilders, Alysia, Keith liked this post
  16. #39
    Join Date
    Sep 2013
    Location
    England
    Posts
    645
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    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.
    Diagnosed April 1995

  17. Likes linda1226, mishb, Alysia, seied, Jaha liked this post
  18. #40
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,016
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    @gilders

    Hope all goes well for you and your Dad. Am I correctly understanding that they’re not going to remove your kidneys?
    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

  19. Likes gilders, Alysia liked this post
Page 4 of 5 FirstFirst ... 2345 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •