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TO those with NO underlying systemic disease please respond

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  • TO those with NO underlying systemic disease please respond

    I am doing some research and would like for those who have ckd due to birthdefect/reflux or simply scar tissue that causes protein to spill or just high b/p {NO-underlying systemic disease} that caused ckd to respond to this .I am curious as to what your treatment is and what stage your in and if you are or have ever looked into stem cell treatment and if so what info.have you found.Thanks!
    ckd,stage3,due to birth defect/refulx,controlled b/p

  • #2
    Re: TO those with NO underlying systemic disease please respond

    Jen,

    I think I may fall into that category. My kidneys failed due to scar tissue in both kidneys. I am in stage 4 they have totally failed and I pee only a tablespoon a day. I do dialysis twice a day. I do a manual at 6pm and do my night time dialysis about 10pm. It was very unexpected, I am the one who sees my dr, dentist regularly, eat pretty good and I am the one who is so sick.....sometimes makes you wonder why you work so hard to take care of your body.... :P but I am working so much more to stay feeling good. Being sick is so much harder than it used to be "before dialysis". I am on the transplant list but I don't really know much about stem cell procedures......

    Patty
    Patty Lewis
    Stage 5 CKD
    PD Dialysis since Dec 2009
    On transplant list July 15, 2011
    patty.lewis 19@ yahoo.com

    Comment


    • #3
      Re: TO those with NO underlying systemic disease please respond

      Hi i have been told my ckd is due to reflux, i only found out a year and a half ago when i was 48 after constant kidney infections. My daughter is waiting to see a nephrologist to confirm that she has the same condition but she has never shown any symptons. My consultant told me that it was hereditary my son has been given the all clear but my daughters kidney scan showed problems. I haven't looked at any research with stem cells but if you want anymore information let me know.
      Millie

      CKD Stage 4 with protein

      Comment


      • #4
        Re: TO those with NO underlying systemic disease please respond

        Originally posted by jenjen76 View Post
        I am doing some research and would like for those who have ckd due to birthdefect/reflux or simply scar tissue that causes protein to spill or just high b/p {NO-underlying systemic disease} that caused ckd to respond to this .I am curious as to what your treatment is and what stage your in and if you are or have ever looked into stem cell treatment and if so what info.have you found.Thanks!
        Hi jenjen,

        I may fall into that category as well since my kidney's main loss of function was due to hospital error in not rehydrating me after caesarean and blood loss.

        I am GFR9 9% and the rest of my body is fine. Not on dialysis as of yet, being tested for transplant. ,No BP control, normal blood pressure. On phosphate and protein restriction but not potassium. I restrict potassium anyways and only have potatoes 2 to 3 x a week. I feel lucky. Husband being tested for me for transplant.

        To answer stem cell question: Someone posted on here a link about them using stem cells on cats where they have full renal failure - fatal - and the stem cells regenerated the kidney fully and cat is doing just fine. Sorry dont know the youtube link but that stuff is out there. Lots of it. Hopefully if there studying animals now then it hopefully wont be long until they can help out people like you, me and Patty.

        Best of Luck!!

        LanaB
        TRANSPLANT SCHEDULED NOV 14, 2011 THANKS TO MY AMAZING HUSBAND!!!
        Today oct 11th.Still no dialysis -and at 9% GFR,
        think i'm gonna make it!!!

        Diagnosed 2005 CKD3.
        Benign Glomulersclerosis- not hereditary, no known cause
        Non-diabetic, normal BP
        Hospital error 2008 caused me to plummet straight to CKD5
        07/2011 -CKD 5 -GFR 11 - Not on Dialysis
        Awaiting transplant, doing eval, hoping for live donor match

        Comment


        • #5
          Re: TO those with NO underlying systemic disease please respond

          and milly too!! Sorry Milly your response must have come as I was responding too.
          TRANSPLANT SCHEDULED NOV 14, 2011 THANKS TO MY AMAZING HUSBAND!!!
          Today oct 11th.Still no dialysis -and at 9% GFR,
          think i'm gonna make it!!!

          Diagnosed 2005 CKD3.
          Benign Glomulersclerosis- not hereditary, no known cause
          Non-diabetic, normal BP
          Hospital error 2008 caused me to plummet straight to CKD5
          07/2011 -CKD 5 -GFR 11 - Not on Dialysis
          Awaiting transplant, doing eval, hoping for live donor match

          Comment


          • #6
            Re: TO those with NO underlying systemic disease please respond

            Hi Jen,
            No underlying systemic disease with me as well. Probably caused by medications and fleet prep for colonoscopy (I had three in a row over a few months). My BP is not that much higher without BP medication (125/85 without meds and 115/80 with meds) therefore probably not BP related. Not diabetic and no protein in urine (no microalbumin either).

            I am not being treated by stem cells but I am interested in the process. Let me know what you find and if anyone has found real lasting success in this kind of treatment.
            Goldminer
            CKD-Stage 2
            non-diabetic, controlled HBP
            GFR-65, Diagnosed August, 2010

            Comment


            • #7
              Re: TO those with NO underlying systemic disease please respond

              No underlying systemic disease here, but it is basically undetermined as to how I got CKD. The great suspicion is high blood pressure, although nephrologist admitted that the history of kidney disease in the family has caused my high blood pressure. I have scarring from a few cysts. One kidney is smaller than the other.

              I've only heard of stem cell treatment for cancer patients as a last resort when chemo has run it's course for treatment. I did not know it was possible to regenerate a diseased kidney, and wouldn't that be great! I wonder what the risks are?
              Stage 4 Chronic Kidney Disease, 17% renal function, 11 years
              *Non diabetic *Non dialysis
              High Blood Pressure, controlled


              "Never be afraid to trust an unknown future to a known God."
              ~Corrie ten Boom

              Comment


              • #8
                Re: TO those with NO underlying systemic disease please respond

                Here is the link on how stem cells cured fatal kidney disease. It's the one I was telling you all about: Watch it!! It will give us all hope for a cure one day.

                http://www.youtube.com/watch?v=5kvAzulCSwE
                TRANSPLANT SCHEDULED NOV 14, 2011 THANKS TO MY AMAZING HUSBAND!!!
                Today oct 11th.Still no dialysis -and at 9% GFR,
                think i'm gonna make it!!!

                Diagnosed 2005 CKD3.
                Benign Glomulersclerosis- not hereditary, no known cause
                Non-diabetic, normal BP
                Hospital error 2008 caused me to plummet straight to CKD5
                07/2011 -CKD 5 -GFR 11 - Not on Dialysis
                Awaiting transplant, doing eval, hoping for live donor match

                Comment


                • #9
                  Re: TO those with NO underlying systemic disease please respond

                  Mine was idiopathic globular membranous nephritis. Dx 2001 CKD stage 4. No stem cell just cyclosporine and diet and fluid and exercise.Stage 5 Dx 2006 and the rest is ESRD.
                  best regards
                  Cicero
                  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

                  Comment

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