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  • First visit with Nephrologist opinions

    Hi,

    I had my first visit with the nephrologist today because my GFR kept going down so I kept asking my rheumatologist about a consult and he finally agreed.Well, she (the nephrologist) did already conform what the rheumatogist had wrote on my last paperwork, that I have stage 3 CKD with mildly decreased GFR, but she said since I don't have protein spillage not to worry and that even though my kidneys are working at about 50-55%that that's probaly normal for me (I'm 41) My GFR was just 90 last year before I had my sinus surgery and was 89 the two times after that, but she said oh you probaly have more muscle now.I do not see how I could have more muscle now, do not exersice since I am in pain and tired everyday and have force my myself just to go to work (have Sjogren's and Fibromyalgia) My Creatinine is not too bad (I guess) at 1.1

    Anyways she wants me to see her again in 3 months for a follow-up and to only take tylenol for any pains I may have from the Fibro. I have been only using tylenol anyways but it doens't help much at all. And of course told me to exercise and warned me that my creatinine will go up when I exercise more.

    Is this normal to be told not to worry with stage 3 as long as you have no protein spillage?

    Thanks so much,
    Christie

  • #2
    Re: First visit with Nephrologist opinions

    Originally posted by Christie View Post
    Hi,

    I had my first visit with the nephrologist today because my GFR kept going down so I kept asking my rheumatologist about a consult and he finally agreed.Well, she (the nephrologist) did already conform what the rheumatogist had wrote on my last paperwork, that I have stage 3 CKD with mildly decreased GFR, but she said since I don't have protein spillage not to worry and that even though my kidneys are working at about 50-55%that that's probaly normal for me (I'm 41) My GFR was just 90 last year before I had my sinus surgery and was 89 the two times after that, but she said oh you probaly have more muscle now.I do not see how I could have more muscle now, do not exersice since I am in pain and tired everyday and have force my myself just to go to work (have Sjogren's and Fibromyalgia) My Creatinine is not too bad (I guess) at 1.1

    Anyways she wants me to see her again in 3 months for a follow-up and to only take tylenol for any pains I may have from the Fibro. I have been only using tylenol anyways but it doens't help much at all. And of course told me to exercise and warned me that my creatinine will go up when I exercise more.

    Is this normal to be told not to worry with stage 3 as long as you have no protein spillage?

    Thanks so much,
    Christie
    Well at age 41 they might thing might be able to stay stable but also know it is a wait and see game. However, kidneys that gradually fail don't usually come back. Not unless it was something sudden and traumatic. But yeah they don't see to worry until protein is coming out in your pee. Then they worry at that time.

    Things you can do is limit how much proteine you eat and ask for Ace Inhibitors (blood pressure pills for high blood pressure but also helps kidneys last longer.
    Angie
    Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
    I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
    • Peritoneal Dialysis = 4 yrs
    • Hemo Dialysis (in center) = 2 yrs
    • 2 kidney transplants = 1990 - 2001 & 2007 to present

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    • #3
      Re: First visit with Nephrologist opinions

      My GFR was also at 90 for years. Last year I had both knees replaced, with 7 months between surgeries. The week before the second surgery, my GFR was still 90. My kidney failure was somehow tied to the second knee replacement surgery, and nobody can determine why. The neph has reviewed all the drugs I was given and says that none of them by themselves should have caused this. When diagnosed, my GFR was 27. After 3 months of being very rigorous with my diet it had come up to 35, where it has remained for 10 months. I don't expect any further improvement. My official diagnosis is "interstitial nephritis of unknown origin." That translates to an inflammation of the little tubes which run between the glomules. The glomules are where the filtration takes place. On the inside, our kidneys resemble a raspberry (a cluster of those glomules).

      You are the only other person I've encountered whose problems arose directly after surgery. I'd like to stay in touch. Take care.
      Janice
      PS - I'm 64.

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      • #4
        Re: First visit with Nephrologist opinions

        Hi Christie,

        I had a 1.1 creatinine level ( which gave me about a 53 gfr ) on my metabolic panel. I went to a Nephrologist who told me that many people ( particularly adults in there 50's and
        (60's) are now being misdiagnosed with CKD. Usually these are people who do not have a history of High Blood Pressure or Diabetes and have no other symptoms.

        He specifically made a point of checking for proteinuria and I did not have any. He said...No protein...No CKD.

        He also felt that 1.1 creatinine level was ok for my age and that the estimated GFR was not accurate and that he felt I was higher then that.

        I was just retested and my creatinine was 1.08. Not down very much....but not Up either. And, still no Protein in my urine.

        I will continue to monitor/have labs.......but only time will tell. My regular Doctor does think I have mild CKD. It is a bit confusing.

        I have cut way down on my protein intake...less salt...etc etc. Not being overweight is something to strive for as well.

        And yes...as I mentioned...my Nephrologist thinks that if you are not leaking protein you do not have a problem. (That is if you do not have high blood pressure and are not diabetic) These are conditions that tend to continually insult the kidneys and cause progression of Kidney disease.

        Well, this is the short version ;-). I suggest you become as knowledable as possible and therefore take a very active part in your own healthcare.

        Also, I see you mentioned this happened after sinus surgery so I can't speak to the impact to your kidneys from that situation. I know it can be very upsetting to think you have CKD.



        PS I wanted to add that I came across a lab result from 2003 and I still had a 1.0 creatinine level at that time. That makes 7 years I have stayed basically the same. So perhaps it is normal for me?
        Diane ~ Sonoma County California

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        • #5
          Re: First visit with Nephrologist opinions

          What if they find just a "trace" of protein in your urine? Is that a bad thing?

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          • #6
            Re: First visit with Nephrologist opinions

            [QUOTE=Christie;29899][FONT="Verdana"]Hi,
            Christi wrote:
            "I had my first visit with the nephrologist today because my GFR kept going down so I kept asking my rheumatologist about a consult and he finally agreed.Well, she (the nephrologist) did already conform what the rheumatogist had wrote on my last paperwork, that I have stage 3 CKD with mildly decreased GFR, but she said since I don't have protein spillage not to worry and that even though my kidneys are working at about 50-55%that that's probaly normal for me (I'm 41) My GFR was just 90 last year before I had my sinus surgery and was 89 the two times after that, but she said oh you probaly have more muscle now.I do not see how I could have more muscle now, do not exersice since I am in pain and tired everyday and have force my myself just to go to work (have Sjogren's and Fibromyalgia) My Creatinine is not too bad (I guess) at 1.1"



            Hi Christi: We have a couple of things in common so I would like to share my experience with you.
            I have stage 3 CKD ( no protein spillage) which my Rheumatologist and Nephrologist agree is a result of Sjogren's Syndrome. ( I am 65 yr and was Dx with Sjogren's when I was 34 yrs; CKD dx in 2007.) An Ultra Sound revealed CKD. Three years ago my creatinine was 1.3. I am maintained on low dose of Immunosuppressant ( Imuran 25 mg once/day ) Creatinine is stable now at 1 for more than 2 1/2 yrs. Of course, I follow a low protein diet and watch Phosphorous intake. I am encouraged that my CKD will remain at Stage 3 as long as the autoimmune mechanism is controlled. I hope you do well. I haven't come across very many people with Sjogren's and CKD, it apparently isn't very common.
            Best Regards
            Marian

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            • #7
              Re: First visit with Nephrologist opinions

              Originally posted by Baffledandconfused View Post
              What if they find just a "trace" of protein in your urine? Is that a bad thing?
              Are you being monitored? A trace could go either way. It would depend on the cause I would think. What does your doctor say?
              Angie
              Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
              I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
              • Peritoneal Dialysis = 4 yrs
              • Hemo Dialysis (in center) = 2 yrs
              • 2 kidney transplants = 1990 - 2001 & 2007 to present

              Comment

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