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Doc knew for 2 years never told me GFR28

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  • Doc knew for 2 years never told me GFR28

    I recently moved to a new state , I had a copy of old medical records and new doc immediately got me into a nephroligst . My gfr has been 28 the last two years and now is at 25. I have tried to start a low purine diet and need to lose about 30 pounds . I will be having an ultra sound tomorrow for kidney function and have completed a huge amount of blood and 24 hour urine tests. I'm mad at the old doc and scared for the future I've read some of the comments, cried some and hope for the best. I was told by old doc I could look forward to 80 and now I'll be lucky to see 5 months to 5 years according to new nephroligst, I guess I'm just rambling but this seems to help some.
    Diabetic oct 2011
    CKD Diagnosed 2009
    GFR range 22-33 goes up and down

  • #2
    Re: Doc knew for 2 years never told me GFR28

    I don't blame you for being upset with your previous doctor. I'm grateful that you now have a nephrologist who seems to be doing all the right tests. As for his "prognosis" for your kidneys, however, I don't want you to take that too literally, at least not right now. He may think he can scare you into better compliance than by just talking to you (after all, he doesn't yet know you very well). When I got my diagnosis in December I was at 27. By April, after being very careful (to the point of being obsessive) about avoiding potassium and phosporus, I was up to 40, which I have maintained since. I hope to hold onto it as long as possible. It's important to let the new doctor know that you are an intelligent person and don't need scare tactics. Ask for a referral to a renal dietitian. And go to aakp.org (that's the American Assn. of Kidney Patients) and order their Nutrition Counter. It will give you potassium, sodium and phosphorus data for just every food there is. It has been a huge help to me.

    Vent anytime, and stay in touch.
    Janice

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    • #3
      Re: Doc knew for 2 years never told me GFR28

      Your words are so encouraging to me I have a request in to the local community education and they will obtain an order from my nephrologst for a renal deitary counsuler i'm eagerly waiting for that appointment. I go for my c-scan in about an hour and hope I can hold my urine for that test .hanks again for your imout.
      Diabetic oct 2011
      CKD Diagnosed 2009
      GFR range 22-33 goes up and down

      Comment


      • #4
        Re: Doc knew for 2 years never told me GFR28

        Nanbrig,

        Its a good thing you have a new Dr. That was very unethcal for your previous Dr. Not to tell you of your condition. He should have informed you in order to prepare for your future.
        There was just a webinar on this. It was about informed consent and treatment options.
        I believe the Dr. should go over all available options and inform you of everything.
        Dont be afraid to learn on your own and question your medical team. A good Dr. will not get upset when you are learning and you question them.
        The slides on the last webinar on treatment options and informed consent are available for you to preview.
        Informe Consent and Treatment Options.

        How are you dong now? You should be part of every step of your treatment. It is not u to the doctor to decide what is best for you. It is a team effort.

        HH
        __________________________
        www.nxstageusers.com

        Comment


        • #5
          Re: Doc knew for 2 years never told me GFR28

          Thanks for your information I see my doc in the a.m. for fridays test results I shoud also be getting the referral for a renal dietiation. I have had the weekend to absorb and reflect. I do feel better tonight than I did friday at least I'm not crying anymore I'm trying to do as much as I can diet wise so help what little function I have left. The crazy thing is I feel good I have lost 4 pouynds of water weight over the last week and my ankle and calf measuremunts have dropped br an inch in each area. I am cold but that is due to my anemia, my iron has been doubled ,I'll know how that leval is in two weeks fof next lab tests. I'm like the cat in the old posters , hanging in there. ThaNKS AGAIN FOR YOUR SUPPORT
          Diabetic oct 2011
          CKD Diagnosed 2009
          GFR range 22-33 goes up and down

          Comment


          • #6
            Re: Doc knew for 2 years never told me GFR28

            Welcome to this site and I'm sure you will find a lot of help. A lot of us have had many of the same problems you are going to have and the rule of thumb is when you have a new problems, ask us fist and stress second.
            I'm not at all sure why your Doc picked a number of 80 years or the second a number of 5 more years. In both cases they were inappropriate and wrong as they really have no idea except for maybe not today.
            The important thing is to live today for it is one you have. No doubts, it is here. Now if you waste it worrying about tomorrow, then you have wasted one day and probably will waste tomorrow too. Just live them one at a time.
            My advice is free, but that does not mean you should take it as golden, its just what I think I have learned in my time in stage 4 and 5 and Dialysis. Been there now in my fourth year. Have nocturnal in center hemo. Feel like a new man. Past 70 so age is not a factor except the way age is a factor in everyday living.
            I've got a procedure for new patients and I'll drag it out and put it in a high level spot and come back and give you a reference to it. It contains amoung other things two references for places to learn more about your disease.
            May God have mercy on us all

            CK

            Idiopathic globular membranous nephritis 1999-2006
            Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
            Chest Cath 4 mos in center hemo dialysis
            Fistula, button holes, self stick days 07-09 in center hemo
            Graft nocturnal hemo 4Q09 to present

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            • #7
              Re: Doc knew for 2 years never told me GFR28

              Thanks for your words of encouragemment. I have spent many hours on the internet seaking all the info I can get . Your words reminded me of something I have said all my life, [don't waste a day doing something you don't like , make the most of each day as any time you waste a day it is a day lost from your total life line ]. Thanks again for reminding me of this . I'm going outside right now to ride my bike on this beautiful day.
              Diabetic oct 2011
              CKD Diagnosed 2009
              GFR range 22-33 goes up and down

              Comment

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