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Thread: Transplant

  1. #161
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    Default Re: Transplant

    @gilders

    Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much your bloods might fluctuate during recovery? I surely hope this result is a short-term anomaly...
    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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  3. #162
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    Default Re: Transplant

    Quote Originally Posted by Pete View Post
    @gilders

    Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much your bloods might fluctuate during recovery? I surely hope this result is a short-term anomaly...
    I haven't been given any time frame for how long it should take to recover. I have mentioned on a couple of occasions that I expected to be physically fitter sooner, but the drs and nurses have repeatedly reassured me that I am making good progress (before the likely rejection episode) and that I need to realise that I have had major surgery and my body is having to get used to some drugs that are very hard on your body.

    A few days after surgery my eGFR was around 45%. The surgeon was hopeful that it would improve after I'd got rid of the post-surgery infection and once my anti-rejection meds had stabilised. I didn't really improve from 45%, but I was more than happy with that function, so long as it didn't decline.

    I asked the post-translant specialist nurse if 45% function was good, bad, or average after transplant. She said that they consider anything from 20%-80% as successful and as I was in the middle of those figures, I should be very pleased. She explained that rather concentrating on how high the function is, what's important is how stable that function is.

    To be honest, I feel the lowest I've felt since the transplant. When my function dropped 11% a week ago I was obviously concerned, but action was taken straight away (3 days of IV steroids). The treatment immediately stopped the decline in function and after the 3rd day of steroid infusions I had a nice surprise of a good jump in function.
    It has been very worrying since then. The results from the biopsy I had on Wednesday hadn't come through by Thursday, so it will be next Tuesday at the earliest when someone will actually look at the biopsy. Within 3 days of dropping down from 500mg/day IV steroids to 20mg/day oral, my function has dropped 9%. This is why I'm feeling a bit low at the moment. I'm sat at home feeling like my kidney is rejecting at a rapid rate and beyond taking 20mg pred, NOTHING is being done due to Easter and I have to just wait and hope that this rate of rejection slows down, otherwise I can see my kidney function dropping so low before the biopsy results are back that it will be beyond saving. I can phone up and pester a registrar dr, but I'm sure all they will be able to do is say we don't know the most appropriate route of treatment until the biopsy result comes through.
    Diagnosed April 1995

  4. #163
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    Default Re: Transplant

    I am an IT leader in a plant. We ALWAYS have work to do on holidays and take turns providing coverage. What I do is much less important than improving health or saving lives. Sad state of your results are delayed due to resource constraints.


    Sent from my iPhone using Tapatalk

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  6. #164
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    Default Re: Transplant

    Please everybody don’t jump all over me. But I am wondering, Pete, if it would be safe for you to increase your oral prednisone until you talk to a doctor. Boy, Keith is right on! Even our grocery and retail stores are open. Shame on the doctors.

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  8. #165
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    Default Re: Transplant

    Keith, I'm struggling not to go on a mad rant, but, I'm really not happy that, at least in the UK, hospitals (except A&E) grind to a complete halt during weekends and especially bank holidays. How they can morally expect patients who are in precarious positions to receive no care from Good Friday to the following Tuesday is beyond me. My wife works at a supermarket and she has to work bank holidays, yet people who have others lives in their hands can just say "no thanks, I fancy taking 4 days off in a row". They should of course not lose these bank holiday days, but should have them spread out throughout the year so that there is some limited cover for bank holidays.
    Saturday is not actually a bank holiday in the UK, so surely if they're getting Good Friday, Easter Sunday and Easter Monday off, they could put a shift in on Saturday.

    Over the years I've learnt to cope and "wait and see" while giving treatment chance to work, but just sat around feeling like my kidney is rejecting at a rapid rate and nothing beyond 20mg of pred is being done, is very hard to stomach.
    Diagnosed April 1995

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  10. #166
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    Default Re: Transplant

    Quote Originally Posted by Masha View Post
    Please everybody don’t jump all over me. But I am wondering, Pete, if it would be safe for you to increase your oral prednisone until you talk to a doctor. Boy, Keith is right on! Even our grocery and retail stores are open. Shame on the doctors.
    It's a tricky one. It's really not the "done thing" in UK. Unless we have specifically been told that we self regulate a medication (usually painkillers and things you can buy over the counter), you're not expected to alter doses of any prescribed medication. Obviously if you feel your life is in danger then to hell with "the done thing". I am presuming it was the IV steroids that helped last week, but nobody really knows what's going on with my kidney, until the biopsy result.

    I am tempted to ask a dr tonight or tomorrow, but think it will just be a registrar, who tend to not change things without checking with the regular drs. Chances are I'll wait until Tuesday morning and speak to a fully experienced dr. If I speak to a registrar I probably won't feel much more relaxed and may end up not speaking to an experienced dr on Tuesday, worried that I may be coming across as someone who constantly pesters drs everyday.

    Thanks for your advice. I certainly won't jump all over you! You make good sense and probably is the best choice, but I don't want to lose the good relationship with the drs that I have.
    Diagnosed April 1995

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  12. #167
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    Default Re: Transplant

    Wow, such a crazy roller coaster Hold tight, Pete.

    I totally understand the resentment over the health system taking their break

    I am also with Masha, 20mg pred might not be enough. I took on my own even 30mg pred when I felt that I needed it, but Israelis are rude and not as polite as the brits are, right ?

    Tuesday is over the corner so you will soon get more answers. You deserve to get them so please insist.

    I have no doubt that our prayers are holding you, our prayers are powerful - because nothing is impossible with God.

    Will continue to pray and will wait for your updates.
    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.
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  14. #168
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    Default Re: Transplant

    I can only echo the above sentiments, and now it's almost Tuesday here, and it is for you, in the wee hours. I hope you get some satisfactory answers, and some insight into whether more pred would make a difference. I have a hunch it would. Looking forward to hearing the biopsy results. Good luck, hoping it's good news.

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

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  16. #169
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    Default Re: Transplant

    I have no idea as to what steroid dosage is appropriate for treating a patient after a transplant. But to me 20 MG doesn't seem like much. I had a boost to 15 mg from my usual maintenance of 5mg this winter just to deal with some increased flare symptoms and it really helped. But when I was in the ICU units knocking hard on death's door nine years ago I got 1000 units of Solumedrol which equals 1650 units of prednisone. Of course such large dosage have great side effects but it was probably an essential part of why I survived and didn't lose my kidneys totally. My follow up for next year from a taper down from 80 to 20 mg pf pred and then from 20 to 5mg the next year after I switched from CTX to AZA for maintenance.

    Your situation also care also makes me appreciate the quality of care I received and my present treatment team. The only time I had anything like a three day wait were the times I tried getting care at the"world's best largest famous treatment center" in Minnesota. And my experiences may have been unusual and not typical of the care most patients receive there. And I was able to get good quality care at other facilities right away.
    Last edited by drz; 04-23-2019 at 02:48 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  18. #170
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    Default Re: Transplant

    I phoned earlier today.
    The biopsy result still hasn't come through. The dr is happy for me to continue on 20mg pred. It obviously wouldn't be enough by itself, but I am on 2 other anti-rejection/immunosuppressants (Tracolimus and Mycophenolate).
    I will be having blood tests tomorrow and just hope that my kidney function hasn't declined further.

    I think tomorrow will be the day when I start getting answers (after blood and biopsy results come through) and a plan will be put in place.
    Except for this Easter period, I have been very happy with the care. They have kept a close eye on me and responded rapidly. I'm just happy this bank holiday period is over.
    Diagnosed April 1995

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