User Tag List

Likes Likes:  949
Page 15 of 26 FirstFirst ... 5131415161725 ... LastLast
Results 141 to 150 of 259

Thread: Transplant

  1. #141
    Join Date
    Oct 2017
    Posts
    126
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Oh no! Iím so sad to hear this. Iím hoping for positive news to come. My thoughts are with you. Please keep us updated. We are all cheering for you!


    Sent from my iPhone using Tapatalk

  2. Likes gilders, annekat liked this post
  3. #142
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,150
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    @gilders

    Rats!! I thought the stars were aligned in your favor on this. Hope they get the problem solved muy pronto!!
    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

  4. Likes gilders, annekat liked this post
  5. #143
    Join Date
    Sep 2013
    Location
    England
    Posts
    765
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    From what I understand -
    There's 2 types of acute rejection, acute cellular rejection and antibody-mediated acute rejection. The acute cellular rejection responds well to steroids and the the antibody one is much trickier to control.
    Unfortunately as they already knew before my transplant that I have 1 antibody against the donor, it looks extremely likely that I have the complicated one.
    I had IV steroids yesterday and today and my function has dropped very slightly again. I had a ultra sound scan yesterday which showed that I have good blood flow through the kidney, no blood clot and no massive lesions or anything that would cause these symptoms. This was good news as I don't think physical damage to kidney can be treated.
    I will be having a biopsy tomorrow that should give some clearer answers. I am concerned that my original illness (vasculitis) may be relapsing as I'm showing some signs and this could cause permanent damage to the kidney. It is unlikely though as some of the anti-rejection meds are the same as those used for vasculitis, but it can't be ruled out until I've had the biopsy.

    If it is my antibody attacking my kidney (which I think is the most likely scenario) there is ways to combat this with plasma exchange and various strong drugs that will completely deplete my immune system. The problem is they can't keep my immune system so drastically suppressed for long (I would need to live in a bubble). So I think the plan will be to lower the immuno-suppresion and hope when my antibodies begin to build back up, they don't detect the new kidney. I really don't know what my chances are for that?
    Diagnosed April 1995

  6. #144
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,150
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    @gilders

    You’ve had several miracles to get this far. I hope there’s another one in the offing for you.

    How is your Dad doing?
    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

  7. Likes Alysia, Masha, annekat, gilders liked this post
  8. #145
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Thanks for the updates, gilders. I am so sorry you are going through all these and I pray that your kidney will settle down with no more issues. If it will demand the pred, so be it. We will provide you "a pred support group".

    Why do you think that your wg might be active ? Since you are on cellcept it should work for the wg as well. I've noticed that when I am stressed, even when my body is full of rtx at its best working time, I still get some wg symptoms (nose bleedings, ears and joints pains) which disapear when the stress is gone. Maybe this is your case now too, because of the stress. Try to calm yourself as much as you can. You are a fighter and have the best docs and treatments. You are in the hands of Our Lord who loves you more then you can ever imagine. You are embraced by many prayers from all around the world, even from heaven, by @pberggren1. Relax, breath, smile and keep on fighting.
    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. Likes Masha, annekat, drz, gilders liked this post
  10. #146
    Join Date
    Sep 2013
    Location
    England
    Posts
    765
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Hi Pete - Dad is still doing great. He's just worried about me at the moment. He jokingly said just after the transplant (when things were going well) "I've looked after that kidney for over 66 years, now you've got to do the same". I totally understand that this rejection is not my fault, I've done everything the drs have asked of me and taken my many meds exactly how I'm meant to, but I still fel really guilty that my dad had to go through quite an ordeal during surgery and now I'm rejecting it.

    Hi Aysia - The reason I think there's a slight chance of Wegener's being active is that I was struggling walking yesterday, my throat has become more hoarse and my hips were realy hurting all night with pain radiating down my legs to the knees. I'd managed to avoid taking anything stronger than paracetamol the last few days in hospital and since I've been home, but I had to take codeine through the night. It's usually my knees, feet, hands and other small joints rather than my hips when I'm relapsing, so it might be connected to the increased walking I've been trying to do?
    I am stressed at the moment. I wanted to feel somewhat better after surgery (once I'd initially recovered), but feel that steroids will make me feel worse than before the operation.
    I think when I know exactly what is happening and what to expect, I'll be able to be strong and get on with however good or bad it maybe.

    If the kidney can't be saved I won't be able to avoid dialysis. My wife has offered me her kidney. We know from some early rounds of the matching process that she has incompatible blood, but there is ways to try and resolve this (but I would be again at an enhanced risk of rejection), I don't have antibodies against her, which is one big positive. We didn't get as far as the tissue matching test, but the odds are never good without a blood relative. Therefore it would be most likely that my wife would swap her kidney with another (or a chain of) people in the same situation as us. My main concern is that I have many antibodies due to previous blood transfusions and finding the right blood group and tissue match would become very tricky once my antibodies are thrown in to the mix.

    I really thought I'd get a good 10 years or more from this kidney and the prospect of maybe having to go through the stress of waiting for a match and going through the surgery relatively soon, makes it hard to keep my spirits up.
    The one thing I won't do is refuse dialysis (even though it's tempting) and accept the inevitable - death. I will fight even if the awful steroid mood swings try to tell me otherwise.
    Last edited by gilders; 04-15-2019 at 02:56 AM.
    Diagnosed April 1995

  11. Likes Pete, annekat liked this post
  12. #147
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    185
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    Oh Gilders,
    I ditto what Pete and Alysia said. One day or one hour at a time. My prayers continue.
    Masha

  13. Likes annekat, gilders liked this post
  14. #148
    Join Date
    Sep 2013
    Location
    England
    Posts
    765
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    I don't want to come across as being a negative person and want to reiterate that even with some of the Wegeners relapse symptoms, I still feel physically better, at the moment, then before transplant.
    Also I'm pretty certain my eyesight is slowly returning to it's pre-transplant excellent vision.
    Diagnosed April 1995

  15. Likes Pete, annekat, Masha, drz, Alysia liked this post
  16. #149
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,907
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    I'm glad to hear it's not all bad and some things, like your vision, have improved. As Alysia said earlier, all your descriptions of what you are going through show how much you've learned about the whole process, and you are giving us a great education, in case it ever happens to us! Best wishes for better news soon.!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  17. Likes Masha, gilders, Alysia liked this post
  18. #150
    Join Date
    Sep 2013
    Location
    England
    Posts
    765
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Transplant

    I had my third and final steroid infusion today.
    Biopsy did not occur today as I'd expected for 2 reasons - 1. I had been told to cease warfarin on Saturday, but carry on with heparin jabs. I followed this plan, but was told today that the heparin has to cease the night before the biopsy (I had taken my heparin jab at 6pm yesterday) 2. The main reason - The biopsy had not even been booked.


    As a day/outpatient the earliest they could book me in for biopsy would be Thursday. The problem with this is that biopsy results are ready the next day, except weekends and bank holidays. This Friday is Good Friday and results wouldn't be ready until next Tuesday, i.e. after Easter Monday. This is leaving it too long in my and the dr's opinion.
    As an inpatient you can jump the queue as an urgent case. I was due to be admitted tonight ready for biopsy on Tuesday, or Wednesday at the latest. BUT there is definitely no beds available on the renal ward. They are trying to get me on a general surgery ward, but as it stands there's is no bed available for me and unlikely that one will become available by tonight. This is a bit of a national crisis within the UK's NHS and has been going on for a few years now. I don't want to come across as anti-immigration and can't say for a fact that any of the beds are been taken up by immigrants, but realistically it is putting a massive strain on the NHS.
    They have even said that a bed can't be guaranteed for me tomorrow.


    I hate spending the night in hospital, especially when it's just to "jump the queue", but I really need this biopsy doing before Thursday, so appropriate treatment can commence this week, not from Tuesday next week!


    My kidney function has been stable at 35% (it had dropped from 46% within 5 days) since I started IV steroids (500mg) each day for the last 3 days, but from tomorrow I will be on oral steroids at a MUCH lower dose. I don't know if this lower dose will keep my kidney function stable, or if it will begin to rapidly decline again.


    If only there was an available bed and a slot for my biopsy, I would feel much safer!


    Thank you for showing interest and wanting updates. It helps as a release to report what I'm going through and hope it helps anyone else in a similar situation now or in the future.
    I'm still happy that I chose to have a transplant and hope my story doesn't put people off. I am a complicated case and most patients won't go through these difficulties. Even if the worse happens and I have to go on dialysis, I will know that I gave transplant my best shot!
    Diagnosed April 1995

  19. Likes annekat, Keith liked this post
Page 15 of 26 FirstFirst ... 5131415161725 ... 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
  •