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Thread: Transplant

  1. #131
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    Default Re: Transplant

    Hi Alysia,

    Thanks for asking how I'm doing.

    I've had quite a few blood tests that have been well out of range, but everything now seems to be heading in the right direction.
    I'm walking further and quicker each day. Stir in quite a bit of discomfort, but nothing too bad except for the occasional sharp pain (mostly getting out of bed).
    I'm passing around 3.5 - 4 litres of fluid/day, so kidney is working well and all the numbers associated with my kidney have been great from the start.

    My main concern (except for the stent removal, due in a couple of weeks) is my vision. Before surgery my eye sight was excellent. Then around 5 days post transplant I was struggling to fill in my fluid balance chart as it was very blurry. Since then my near sight is very poor. The last couple of days I've noticed my longer vision is slightly worse also.
    I saw the eye specialist at the hospital yesterday. He did scans and had a good look in my eyes. He could not see anything wrong in my eyes. He had me read the chart at distance and whereas I previously could read the bottom line, I could only read the third line up.
    He said that, for my age, my eyesight is normal and suggested I just buy a pair of reading glasses. In his opinion it is just age related vision loss. I totally disagreed with this and he said that because of everything I've been through with surgery that I'm probably being over sensitive to everything and just hadn't previously realised how my eyesight was deteriorating. I think this is crazy, I now struggle to read which is something I couldn't have just not realised before the surgery, I read every night in bed.
    I'm not sure what to do. I believe that physically my eye looks good, so think that if someone else has a look they won't be able to make a different diagnosis.
    Diagnosed April 1995

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  3. #132
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    Default Re: Transplant

    @gilders

    I think youíre rightly concerned to be concerned about a sudden change in your vision. Iím glad the specialist didnít see anything wrong. Perhaps a second opinion by another specialist (preferably an ophthalmologist) would be in order. Perhaps, as your healing progresses, this issue will resolve spontaneously. If it doesnít, glasses, contact lenses, or laser refractive surgery could be good options.
    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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  5. #133
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    Default Re: Transplant

    Hi Pete,
    I think the eye specialist was a ophthalmologist (I'd just forgot what they were called).
    I'm also hopeful that my eyesight may return to normal once everything settles down.
    It does seem to vary at different times of the day, which leads me to believe that no permanent damage must have occurred as I wouldn't expect to have periods improvements.
    I have previously tried my wife's glasses on, just for fun, and everything was very blurry. Since my eyesight has deteriorated I have tried them on again and they help immensely with reading. So it's good that I know my vision can be corrected with glasses, but I'd still prefer to have my pre-surgery vision.
    Diagnosed April 1995

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  7. #134
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    Default Re: Transplant

    Thanks for the update, gliders. I am so glad your new kidney is working well and that you are recovering

    As for your eye sight: have you been on high pred in the surgery and after ? It might be related.
    You need an eye dr.'s Check to see if there is a cataract. Mine grew after periods of high pred. Also it can be temporary side effect of the pred or of another med. I also had deteriorating vision when my nutrition was very bad because of diarrhea.

    Please update us.
    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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  9. #135
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    Default Re: Transplant

    Quote Originally Posted by gilders View Post
    Hi Pete,
    I think the eye specialist was a ophthalmologist (I'd just forgot what they were called).
    I'm also hopeful that my eyesight may return to normal once everything settles down.
    It does seem to vary at different times of the day, which leads me to believe that no permanent damage must have occurred as I wouldn't expect to have periods improvements.
    I have previously tried my wife's glasses on, just for fun, and everything was very blurry. Since my eyesight has deteriorated I have tried them on again and they help immensely with reading. So it's good that I know my vision can be corrected with glasses, but I'd still prefer to have my pre-surgery vision.
    I don't know if this pertinent or applicable, but when my blood sugars are off, my vision is worse. One optometrist recognized this and had me do vision tests three times to try correct my vision to what it was with my average BG levels. You state you still have some abnormal labs yet while in recovery from surgery. Maybe some of them are related to something that affects your vision like blood glucose levels. The opthamologist should be aware of this but it might be good to ask the specific question in case they forgot to check this area.
    Knowledge is power! Wisdom is using it to make good decisions!

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  11. #136
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    Default Re: Transplant

    Alysia - One of the reasons I liked the hospital that was doing the surgery and after care is that they don't continue with pred for the life of the kidney (my body has had enough pred and I get bad side effects now). I did have one IV bag of pred immediately after surgery, but the eye issues started about 5 days later, plus I never have eye problems after the pred I receive with Rituximab infusions. But I don't know what dose, so if it was especially high, then there's a slight possibility it could be related.
    I did already have a sub-capsular cataract. He did spot this (without me telling him about it), but said that it was minor and for someone my age, was normal. He did not have previous results from other hospital to compare, but estimated that it must not have got worse as it was very mild and shouldn't effect my vision, except for night vision, which has been a little poor even before surgery.
    My stools are very soft, but I wouldn't quite class them as diarrhoea and I'm eating well, so don't think it's nutrition related.
    My main anti-rejection med does list vision disorders. The ophthalmologist seemed to dismiss, saying that drug companies list almost every side effect to cover their backs. Although there are other anti-rejection meds, this is the best one for me. I would only start to request to change this drug if my eyesight becomes any worse as I don't want to put this kidney in jeopardy.

    Drz - It is appropriate that you should mention blood sugar/glucose levels. Many patients do acquire diabetes after transplant (think it is due to drugs). Mine has consistently been climbing very slowly and is still in range - 5.6 mmol/l (range is 3.5-7), so shouldn't be effecting my vision. The
    ophthalmologist did think of this along with what happens with many renal transplant patients - before transplant most do not produce enough urine, so their body's are overloaded with fluid. This happens in the eye also. So after transplant when they begin to pass plenty of water, their eyes shrink a tiny amount and this is enough to alter the lens and consequently their vision. I was fortunate enough that pre-transplant I passed plenty of water (it just wasn't getting filtered), so this scenario doesn't apply to me.

    Thanks for all your advice!
    Diagnosed April 1995

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  13. #137
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    Default Re: Transplant

    I'm just glad the transplant is done and you seem to be doing pretty well. I hope you get the vision issues sorted out or they go away on their own as your body adjusts to what it has been through.

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

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  15. #138
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    Default Re: Transplant

    Wow, gilders, you have become such an expert on kidney's transplant. There are so many issues related. Thanks for sharing all that info.
    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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  17. #139
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    Default Re: Transplant

    This post is not a very positive one I'm afraid.

    It is looking like I am rejecting the new kidney.

    My blood results have shown a decline the last 3 times from 47%-36%. I need to return tomorrow morning for repeat blood tests. If my function has not improved, I will be having a scan (it has already been booked) and I will be admitted to the ward. Usually a biopsy would be used to confirm rejection, but due to it being the weekend and the fact that they are so sure it's a rejection that's occurring, they'll begin treating me for rejection. I'm not sure how long they'll keep me in for, maybe it will be until blood results show my kidney is stabilising.

    I was so pleased when I found out that this hospital doesn't use prednisolone long term after transplant (my body doesn't do well on pred) and now it looks like I'll be on high dose pred for 6 months.

    I'll keep you all updated. Please keep the positive vibes heading my way. I think I'm going to need them these next few days.
    Diagnosed April 1995

  18. #140
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    Default Re: Transplant

    Oh, no, Pete. I will be thinking of you, praying, in my way, and sending positive vibes, as much as I can, and fervently hoping for a solution or resolution to this problem. I hope you can avoid going on high dose pred, as that sounds just awful for you. Just know there are many here that will hold you in their thoughts and prayers and will be sending unlimited positive vibes! We love you!

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

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