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  1. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Just a quick update.
    There was a delay in receiving my latest blood test results, but I'm happy to report my kidney function has improved slightly (by 1%, to 36%). It's not a big improvement, but...
  2. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    It's hard to say. I'm still having good days where I definitely have more energy than before the transplant. But my bad days seem even worse than before transplant.
    There is the possibility that my...
  3. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    As mentioned in my last post, after weeks and weeks of a slow decline in kidney function, I eventually had a 4% increase, which we thought was due to a change in dose of my anti-rejection drug.

    I...
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    9,881

    Re: Happy Birthdays Thread

    Happy Birthday Phil and Barbara (and my wife who also shares their birthday). I would have liked to tell you all about my successful kidney transplant, but I guess you were already there with me...
  5. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    I'm sorry for any worry caused by not updating as frequently as usually. My blood results from the last day I updated (June 19th) showed still no improvement of kidney function, but thankfully, no...
  6. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Hi Alysia,
    My kidney function has continued to decline 1-2% evey couple of weeks. I've also had much less energy last week or so.

    I saw one of the specialists today and they think that it's due...
  7. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    I suspect that many results may be falsely high if you're dehydrated. After all less water in your body/blood will lead to higher concentration of most things.

    My swelling went down a lot on the...
  8. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Hi Alysia,
    I thought I'd wrote an update, but mustn't have (must be the Pred playing it's mind tricks).

    The Ultrasound showed good blood flow in kidney and bladder was good. The area where the...
  9. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Just a quick update.

    My blood results showed a tiny 1% reduction in kidney function last week. Not happy that it's another drop in function, but it was so small drs aren't concerned. In fact I've...
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    81

    Non-identical organ swap

    I first became aware of paired/pooled organ donation during my transplant work up. This was for the purpose of swapping kidneys around between donors and recipients making matches for living...
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    Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,
    I was started on Cyclophosphamide and prednisolone, but couldn't tolerate Cyclo. I was moved on to pred and Azathioprine and this worked well for many years.
    But after my last...
  12. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    I don't think the decrease in pred is directly related to the decline in function. But if the decline in function is due to rejection, then the pred would have been helping to stop the rejection and...
  13. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Had my weekly appointment yesterday.
    The good news is that I can drop pred from 10mg/day to 7.5mg.
    I won't call the other news "bad news" as it's only a small drop in kidney function (42 - 40) and...
  14. Thread: Went to duke

    by gilders
    Replies
    10
    Views
    301

    Re: Went to duke

    Hi Masha,
    Even when I'm in remission and not on any immunosuppressive treatment, I almost always have a mild chest infection and cold symptoms. My pulmonologist started me on bactrim, but stopped it...
  15. Thread: Went to duke

    by gilders
    Replies
    10
    Views
    301

    Re: Went to duke

    So pleased you've found a Wegener's expert that seems to care and take time to listen.
    She sounds very thorough.

    Has she come up with a solution to the pred problems?
  16. Replies
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    9,881

    Re: Happy Birthdays Thread

    Happy Birthday Natrice!
  17. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Blood tests today showed kidney function still stable at 42%, so looks like whatever caused the previous dip is in the past now. :thumbup:
  18. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    The stent came out earlier today. :thumbsup:
    I watched the video feed while the nurse "fished around" for the stent. It was a bit tricky to grab as the stent had managed to to lie completely flat...
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    Re: Just diagnosed from Queensland Australia

    Sorry for the belated welcome Rob. I think you first posted around 5 days before my kidney transplant, so probably had my head elsewhere.
    Got to echo what others have said - your fairly early...
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    Re: Your personal experiences in treatment?

    Cawcawcaw, it's going to be very difficult to assess how quickly you personally will be able to return to a somewhat normal work routine based on other's experiences (but still worthwhile asking)....
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    Re: Hello from another new member

    Welcome Tricia,
    Your symptoms are how it all started for me 24 years ago. Unfortunately my diagnosis and treatment took so long that it had spread to other parts of my body.
    I'm sorry to hear that...
  22. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Just received phone call. The surgeon spoke to transplant drs and it has been decided that I can reduced pred from 20mg to 10mg from tomorrow. I think they will monitor kidney function and so long as...
  23. Thread: Transplant

    by gilders
    Replies
    228
    Views
    20,216

    Re: Transplant

    Well, I received it from my 66 year dad, so maybe I should call it "Old faithful"

    Pensioners get various benefits and discounts. As at least part of me is of a pensionable age, maybe I should...
  24. Thread: Dsap

    by gilders
    Replies
    4
    Views
    209

    Re: Dsap

    Hi Arleta,

    I have not heard of DSAP on this forum before, so guess it's not very common with Wegener's patients.

    I also googled some info. I'm sure after living with it for many years, there's...
  25. Thread: Nine years

    by gilders
    Replies
    6
    Views
    251

    Re: Nine years

    Jana, happy anniversary ,we're all happy you're here.
    Biopsies are the most accurate way of diagnosing vasculitis.

    Hoping you're well at the moment and good health continues.
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