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  • Where should I start

    My name is Adam. I have been reading this site for a while, and yes I have Chronic Kidney Desist (CKD) I know it is impossible for someone to help me direct because, all cases are different. I have CKD for a log time, but did not realize how dangerous it is. Unfortunately my doctor never mention to me what should I do to extend time of proper kidney function. I just hope changing the doctor is not to late for me. I am in stage 5 according to my last blood work. But only creatinine level is wrong any other test are in range; Phosphorus, potassium. Albumin, Sodium, Bicarbode, A1C etc. It is possible the blood test was mistake? It is some tolerance in those test plus/minus some percentage?

    Lets say I do have stage 5 kidney failure. Will not show any symptoms? I feel great, have no problems with anything. It is normal? I have slightly high blood pressure. I am also diabetic for 16 years but I control my diabetes A1C 5.0. for many years.

    If I have stage 5 what should I do change food intake, exercise more. Where I can find all those answers not from my doctor he has time for 10 years to educate me and he did nothing.

    Any advise will be welcome
    P.S.
    Please do not use abbreviation, my English language is not my native language.
    Thank you, and stay healthy...

  • #2
    Blood results are often wrong. In my case, my GFR number is usually quite bad, but a 24 hour urine output test gives me better numbers every time I take it. Creatine numbers can be manipulated, especially if you drink any of these 'energy drinks' (which, as a kidney patient, you should avoid completely). If you are TRULY stage 5, you are already on dialysis. If you are not on dialysis, and nobody has mentioned it, you are NOT stage 5. You need to see a nephrologist immediately.

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    • #3
      dac0214 So looks like I am not on stage 5 because I can't get hold of any doctor or dietitian. I try find answers everywhere but doesn't look like any one care. I feel in general very good has no symptoms, maybe once a while I lose my appetite, but that happen before. I just hope you're correct about creatine and I am not on stage 5 yet. I just wonder if my doctor order blood test and see the results why he never order the 24 hours urine test at the same time?
      I don't drink any (energy drinks) I drink only water now. I use to drink Diet sodas, but stop long time ago.
      Last time just after the blood test I see my doctor and visit was like 3 minutes and i was out the door, with next appointment 3 months from now.
      I am in search for new doctor right now because I can't get a hold of him when I needed.
      Thank you for your respond
      English language is not my native language please for give me my way of writing.
      Thank you, and stay healthy...

      Comment


      • #4
        Dav0412 has a good point. More blood tests may be in order to determine if you're ESRD now. For me the creatinine was elevated for quite some time before I started dialysis. It was the elevated BUN that pushed me over the edge and I was declared ESRD versus CKD and started dialysis.

        Get re-tested. If you don't have symptoms of ESRD, something is not right. Here's a site with the symptoms: http://www.freemd.com/esrd/symptoms.htm

        Devon
        Fistula - March 2008
        Began Dialysis - August 2008
        Fistula Revision - Feb 2011

        Dialysis Patient Citizens, Patient Ambassador
        NW14 ESRD Network, Patient Advisory Committee Member
        CDC Infections Control Discussion Panel Member
        National Kidney Foundation Peer-to-Peer Mentor

        Blog: www.DevonTexas.com

        Comment


        • #5
          DevonTexas I have been looking for those symptoms from the link your provide, and some of them I have but not just happen now. I have them once a while for a long time. But no one told me this could be sine of kidney failure. My last blood work is not really good about creaitine and BUN. I try locate answer for my question, how important those numbers are on this test? If they go bad for instance they go bad at the same time? or is enough if one go bad then I have a big problem. How high creaitinie goes before you're start you dialysis, and when i will know I have to do dialysis. If is any way to avoid or slow down process to dialysis? It sound simple questions, but have a hard time to find the answers. I am totally unknown the subject I don't even know where to start research in this subject.
          Unfortunately my present doctor did not telling me much about it, I am in search for new doctor. But that problem I have for years. It is anyway we can slow down this process or just wait until we die.
          English language is not my native language please for give me my way of writing.
          Thank you, and stay healthy...

          Comment


          • #6
            "I am totally unknown the subject I don't even know where to start research in this subject. "

            Check out the Wikipedia site about CKD http://en.wikipedia.org/wiki/Chronic_kidney_disease also the Stages section of that page.

            And of course, asking questions here is a good thing. Don't worry about your English, we'll get the idea and try to answer your questions.

            Devon
            Fistula - March 2008
            Began Dialysis - August 2008
            Fistula Revision - Feb 2011

            Dialysis Patient Citizens, Patient Ambassador
            NW14 ESRD Network, Patient Advisory Committee Member
            CDC Infections Control Discussion Panel Member
            National Kidney Foundation Peer-to-Peer Mentor

            Blog: www.DevonTexas.com

            Comment


            • #7
              Here's a good page about BUN and Creatinine... http://www.webmd.com/a-to-z-guides/c...earance?page=4

              Devon
              Fistula - March 2008
              Began Dialysis - August 2008
              Fistula Revision - Feb 2011

              Dialysis Patient Citizens, Patient Ambassador
              NW14 ESRD Network, Patient Advisory Committee Member
              CDC Infections Control Discussion Panel Member
              National Kidney Foundation Peer-to-Peer Mentor

              Blog: www.DevonTexas.com

              Comment


              • #8
                DevonTexas thank for warm words. I just go back from doctor office and looks like I have to go for dialysis, which I am afraid of it. My brother just die recently after few months on dialysis. I don't know much about it dialysis I know in general what they do to human, but never take in consideration I will need them. My nephrology which I have for near 10 years keep telling me I am doing OK and obviously wasn't so OK if I end up on stage 5. I am in stage 5 and I have to get prepare for dialysis, but have no idea which one, it is so many different kinds. And none of them understand in detail how they works and what kind benefit do I have from it. Which one is easier to control and how I can even control anything? I waste 10 years and did not get enough education because my doctor keep telling me I am fine. I cannot believe why he was telling me I am fine when was everything opposite.
                even here on this forum I am from 2010 member. I post few questions but did not get lucky, someone actually answer them for me.
                I guess this is my faith to just let go and die like my brother did, because doesn't mater how hard I try to get knowledge is no way to find correct road to it.

                English language is not my native language please for give me my way of writing.
                Thank you, and stay healthy...

                Comment


                • #9
                  What should your daily intake (mg) of potassium and phosphrous be for Stage 3/4??

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                  • #10
                    hello,my da had biopsy in Dec . 32 cells looked at. said it was mcd,but did not respond to ace, or norvasc,cont with 3-5 protein. Last creatinine was high normal. Doc. wanting to do another biopsy.She d/c the norvasc,started her on lasix 40.The swelling somewhat better,feels some better,but very tired.I am so afraid it may be fsgs. New to this,trying to be supportive.Son is in early liver failure r/t meds for AS,husband has parkinsons,and I am in 2nd.remission for cancer.Trying to wing this alone. Also, know anything about the study done at UAB .Any help appreciated,mother nancy

                    Comment


                    • #11
                      @nolife

                      It can be very difficult to find the right Dr. I had to leave my home town to find one. I think CKD is a difficult section of the medical profession. Dialysis can be a life saver. It is not a simple decision there are some different kinds with different goods and bads. You may want to try kidney.org They have some resources that may give you some help, they also have a phone line where you can talk with someone. I have not used it myself, but I found a Dr who was great and helped me with the whole thing. There are options out there. I hope you have some luck. All my best

                      Jeorge

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                      • #12
                        I wrote an article on this:

                        http://www.kidneydoctorbradenton.org...ms-of-ckd.html

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