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Thread: Kidney function - deterioration

  1. #11
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    Thanks guys. I think it is funny how it has all turned out. Do you remember when I first joined in 2011 and I had mild symptoms to what I have now and the first specialist didnt believe me, the second one half heartedly did but stuck with me, then the symptoms grew in severity and as new things cropped up, I photographed them and now have a diagnosis of UCTD (pushing towards Lupus) - confirmed by doctor through photos and eye specialist from eye tests.

    It seems to be getting more aggressive and now I have bad lung involvement and my kidneys are starting to play up. It goes to show that you MUST stick with pushing for an expert opinion and never give up.

    One thing I dont understand, is how by the first lot of bloods, the consultant is able to say he doesnt think its drug related? He also said 'whatever happens, keep taking the cellcept and the preds' He knows I cant go above 5mgs of preds but says I have to stay on that at the least.

    I just have to wait until Wed now to get my results, I know there is something wrong with the kidneys though, I feel all 'wrong' and out of sorts and in the morning I feel sick and dizzy and my hands feel funny.

    Anyone else get symptoms with their kidneys and if so, what do you get?


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    tgal (01-25-2014)

  3. #12
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    Thanks Steve for the chat earlier, you have no idea how much it meant.

    Looking forward to catching up at the end of the month xx

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    steve.b (01-25-2014)

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    You are absolutely right. We MUST be our best advocate because too often even the doctors are not willing or able to see what we know is happening.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    chikititalinda (01-28-2014)

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    Quote Originally Posted by tgal View Post
    You are absolutely right. We MUST be our best advocate because too often even the doctors are not willing or able to see what we know is happening.
    Its a strange feeling when you feel 'wrong'. Some days I dont have any or little nausea - this morning whilst I dont feel sick, I have zero appetite either and I am a bit itchy.

    I can tell when its bad because on other days my joints are so stiff and the itching is terrible and I cannot even look at food. I just knew the disease had taken another turn but didnt know what it was and never dreamt it could be kidneys.

    I keep hoping that when the specialist rings me on Wed, he will say it is all back to normal and my results were initially out as I was dehydrated or something.

    Oh Steve, I looked into that grant for heating/cooling and we dont qualify as both my husband and myself are working. So I shall try and raise some money by doing some journalism - havent done it in ages but if I can do some writing outside of my normal job, I should be able to get my air con fund underway.

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    When I had kidney problems, I lost weight, couldn't keep anything down, was tired, had trouble breathing....but for me it turned to kidney failure. Not trying to scare you...that's just what happened to me. That was in 2011...now it's 2014 and I'm ok kidney wise but I still worry if anything close to what I experienced begins to happen again.

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    Quote Originally Posted by kimmielou View Post
    When I had kidney problems, I lost weight, couldn't keep anything down, was tired, had trouble breathing....but for me it turned to kidney failure. Not trying to scare you...that's just what happened to me. That was in 2011...now it's 2014 and I'm ok kidney wise but I still worry if anything close to what I experienced begins to happen again.
    I have had breathlessness, which I put down to the Sjogrens but my weight loss has been quite noticeable and the nausea makes it very hard for me to eat.

    I wonder how someone can just develop kidney issues so quickly? My doctor said it is common with auto immune diseases including Lupus. Some days I feel so weak I can barely walk and have to force myself to do anything and my concentration is badly impaired at times as well.

    I hope it isnt kidney failure for the fact I cannot go any higher on the steroids due to sever reactions with them - to the point I wear a medic alert bracelet, I can tolerate no more than about 7mgs and I am on 5mgs now. Doctor said I MUST stay on the steroids for the moment, assuming its to protect the kidneys.

    Its just the not knowing that gets me

    I should find out on Wednesday what is going on (hopefully)

  10. #17
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    Quote Originally Posted by Corella View Post
    I have had breathlessness, which I put down to the Sjogrens but my weight loss has been quite noticeable and the nausea makes it very hard for me to eat.

    I wonder how someone can just develop kidney issues so quickly? My doctor said it is common with auto immune diseases including Lupus. Some days I feel so weak I can barely walk and have to force myself to do anything and my concentration is badly impaired at times as well.

    I hope it isnt kidney failure for the fact I cannot go any higher on the steroids due to sever reactions with them - to the point I wear a medic alert bracelet, I can tolerate no more than about 7mgs and I am on 5mgs now. Doctor said I MUST stay on the steroids for the moment, assuming its to protect the kidneys.

    Its just the not knowing that gets me

    I should find out on Wednesday what is going on (hopefully)


    My kidney function spiraled downhill in a two month span...definitely make sure you get some lab work done to check your creatinine levels and renal function now. I waited too late...I was having blood in my urine by the time I went to the hospital. If I would have waited any longer I would have lost my life. Please make sure you checked thoroughly ASAP .

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    I had the same issue with concentration....at times I just couldn't think at all. I was in school at the time and usually my thoughts flow, but I felt like my brain was shutting down. It was crazy. By the grace of god I was pulled through and I think about it every day. I've been through dialysis, and it was scary for me. I never wanna have to need it again...I keep praying.

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    Quote Originally Posted by kimmielou View Post
    My kidney function spiraled downhill in a two month span...definitely make sure you get some lab work done to check your creatinine levels and renal function now. I waited too late...I was having blood in my urine by the time I went to the hospital. If I would have waited any longer I would have lost my life. Please make sure you checked thoroughly ASAP .
    Yep, I think they did all the kidney tests on Wednesday plus I had to fill two urine pots - I get all results tomorrow - I am wondering if dehydration stuffed up my results, or am I just wishful thinking?

    The symptoms I have had are in hindsight, speaking volumes. Oh well - we shall see.

  13. #20
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    Well no call from the doctor as yet - it is 10.40am, I am assuming all must be back to normal and think if it was that urgent, I would have been called by now surely?

    Feeling confident it was just a bad one off blood result.

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