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Thread: Transplant

  1. #201
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    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 been moved from weekly appointments to fortnightly. Unfortunately this clashes with my vasculitis appointment at Addenbrooke's, so I'm now back at the transplant clinic on 3rd June (almost 3 weeks). This seems a bit too long for me especially has things haven't gone too smoothly.

    Well as it now turns out, I'll be back in clinic tomorrow. I awoke this morning with discomfort around my new kidney area. This often happens and I think it's because I tend to sleep on my side or front, putting pressure on the kidney. But this morning I had a swelling (about the size of a large fist) approximately 10cm above my kidney (just to the left of my belly button). I contacted the transplant nurses who liaised with the surgeon and they asked me to get an emergency appointment with my GP (average wait times are about 4 weeks+ for routine appointments) and it was suspected that I have an abdominal hernia (not uncommon after kidney transplant surgery). My GP agreed that I was swollen and there's tenderness and discomfort, but couldn't diagnose a hernia as it didn't move when I cough. She contacted the transplant team for advice and I need to go tomorrow morning for blood tests, an ultrasound and for the surgeon to examine me.

    I still believe that it's most likely an hernia. Although it doesn't move when I cough, it seems to when I sneeze. I was told "no heavy lifting for 6months". I think I may have overdone it. My wife has been back at work for a couple of weeks and I can't just leave all the housework for her. I didn't think that I'd lifted anything heavy, but maybe doing thing like picking up a basket of freshly washed clothes is enough to cause hernia?
    Any news, Pete ? Praing for you. Please let us know how are you doing....
    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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  3. #202
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    Default 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 swelling is didn't show an obvious hernia, but the nurse/technician performing the scan admitted that there's other scans that would be best used for hernias.

    The blood tests were fairly good/stable. Kidney function has dropped yet again, but only by one percent. I found out that this is to be expected while you are recovering. The kidney function percentage (eGRF) is calculated mostly from creatinine. As creatinine is a waste product that comes from the normal wear and tear on muscles of the body, the more you exercise and consume meat, the more creatinine you'll have in your blood no matter how well your kidneys are functioning. I have been exercising more each week as I slowly feel up to it and as the first few weeks I hardly moved (i.e. didn't use muscles) it is expected for the kidney function to look like it's dropping, when it actually isn't.

    Back to the swelling. It just so happened that the swelling had gone down a lot since the previous day. After blood tests and scan I was seen by one of the surgeons (the only one that I'm not too keen on). He tried to convince me that what I was feeling was my new kidney. I told him that I could feel the location of my kidney much lower down, near my scar. He said that what I was feeling near my scar was the fluid that occurs after surgery, that then hardens. I still didn't agree with him, but sometimes it's hard to argue with the professional. I stupidly didn't think to mention that when I had the scan about an hour earlier, the nurse/technician talked me through it and the kidney was near my scar on the scan!
    The result was to keep an eye on it and if it becomes larger or painful, to tell them. Although not the best result I understood why the surgeon seemed happy with it, as the swelling wasn't very large and had decreased in size by a lot in less than 24 hours. The blood results and scan showed nothing sinister either.

    I'm at Addenbrooke's on Friday (Vasculitis) and back to St. Jame's, Leeds on Monday to see transplant Dr. I'll mention it to both and see if they have any ideas what it could be.
    Diagnosed April 1995

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  5. #203
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    Default Re: Transplant

    Thanks for the update.

    Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

    That's interesting what you wrote about how the creatinine is affected by exercises and eating meat. What I've noticed is that the creatinine can be falsly high if I am dehydrated.

    Keep on getting better. Keeping you 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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  7. #204
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    Default Re: Transplant

    Quote Originally Posted by Alysia View Post
    Thanks for the update.

    Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

    That's interesting what you wrote about how the creatinine is affected by exercises and eating meat. What I've noticed is that the creatinine can be falsly high if I am dehydrated.

    Keep on getting better. Keeping you in my thoughts and prayers.
    I’ve noticed the same thing. Last year, my heart catheterization was delayed for several hours because my creatinine was too high. It took awhile to hydrate me to the point where my creatinine dropped into the normal range. My creatinine runs a little high most of the time. I eat red meat daily and probably don't drink enough water. (I guess beer doesn't count...)
    Last edited by Pete; 05-31-2019 at 04:54 AM.
    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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  9. #205
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    Default 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 day the surgeon examined me, but from the day after it was quite large again, although not as large as the first day. I'm still not overly concerned, I just like to know what's going on in my body.
    Diagnosed April 1995

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  11. #206
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    Default Re: Transplant

    How are you doing so far, @gilders ?
    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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  13. #207
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    Default 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 to the amount of Tacrolimus (antirejection drug) in me, that's causing the problems. I'm having my dose reduced and hopefully I'll begin to feel better and my kidney function should improve. If it doesn't they'll look for other reasons.

    My function was 36% 2 weeks ago. The results for today haven't come through yet. The dr warned me that she expected my tacrolimus level (in my blood) will have risen since last time and consequently my function will look like it's dropped.
    Diagnosed April 1995

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  15. #208
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    Default Re: Transplant

    Iím sorry gliders! I was hoping and praying that you would be recovered by now & dancing on tables! Iím still thinking of you


    Sent from my iPhone using Tapatalk

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  17. #209
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    Default Re: Transplant

    I've been wondering, Pete. Using Tapatalk I am not always informed of new posts. This journey of yours just keeps getting more complicated! Dang. It sounds like the docs are well on top of the ins and outs and the reasons why. I hope that an adjustment of your meds will indeed make a difference! And how is your dad doing? I'm assuming he's fine, but want to make sure.


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

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  19. #210
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    Default Re: Transplant

    Keeping you in my thoughts and prayers, Pete.
    I hope the fluctuations in the kidneys functions are not significant and that your docs know how to treat it. Please update us when you can.
    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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