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  • I need help, I don't understand

    I have seen two different nephrologists over the last 8 years and they cannot figure out what is wrong. I have a bunch of different symptoms (blood work) for a lot of different things, but have not been diagnosed with anything other than Stage 3 CKD. I have seen a dietitian and followed it to the best of my ability. I have 4 small children and a husband that likes to eat meat. Below are my test results the first one from 5/10/18 and the last time was 9/12/18. On 9/13/18 my second doctor decided to do another biopsy. The last one was Feb 2010.

    5/10/18:
    Creatinine 1.68 mg/dL
    eGFR 36
    Protein/creatinine ratio 3497 mg/g
    PTH Intact 125 pg/mL
    Uric Acid 6.4 mg/dL

    9/12/18:
    Creatinine 1.95 mg/dL
    eGFR 30
    Protein/creatinine ratio 3408 mg/g
    PTH Intact 175 pg/mL

    I do not have weak bones, never had a kidney stone, no fatigue (other than the fact that I have 4 small children), no aches or pains, no nausea, or gout. We are hoping that we ruled out Lupus, but not 100% yet. My doctor believes that it is an autoimmune disease he just isn't sure which one yet.

    But I need help trying to fix this. By the way I just turned 30. I need to be here to watch my children grow-up. How can I fix this?


  • #2
    And you ask this question to a random bunch of online posters??????

    Comment


    • #3
      Kristinz, I don't think anybody here will be able to provide a diagnosis for you. The best is to wait for the results of the biopsy your doctor has recommended. The thing with kidney disease is that there are very little symptoms as you know. My suggestion is to start monitoring your diet a bit until you find out for sure what is your diagnosis. All the best.

      Comment


      • #4
        Hi. I am not a doctor only a kidney patient myself. GFR will go up and down. When i was first diagnosed my GFR was 15 with diet and no sodium i brought it up to 40. Then it went down. To stop the progression you need to find out what is causing the problem . If its something you can control, then thats wonderful! If its not like lupus for example just eat a kidney friendly diet, drink water, cut out sodium and live your life the best you can. None of us know when our lives will be over,, only God. So change what you can with healthy diet ect. And dont worry about what you cant control. Live your life, enjoy.Do what you can do and dont worry about the rest that you cant control. Hope this helps

        Comment


        • #5
          Originally posted by kristinz View Post
          I have seen two different nephrologists over the last 8 years and they cannot figure out what is wrong. I have a bunch of different symptoms (blood work) for a lot of different things, but have not been diagnosed with anything other than Stage 3 CKD. I have seen a dietitian and followed it to the best of my ability. I have 4 small children and a husband that likes to eat meat. Below are my test results the first one from 5/10/18 and the last time was 9/12/18. On 9/13/18 my second doctor decided to do another biopsy. The last one was Feb 2010.

          5/10/18:
          Creatinine 1.68 mg/dL
          eGFR 36
          Protein/creatinine ratio 3497 mg/g
          PTH Intact 125 pg/mL
          Uric Acid 6.4 mg/dL

          9/12/18:
          Creatinine 1.95 mg/dL
          eGFR 30
          Protein/creatinine ratio 3408 mg/g
          PTH Intact 175 pg/mL

          I do not have weak bones, never had a kidney stone, no fatigue (other than the fact that I have 4 small children), no aches or pains, no nausea, or gout. We are hoping that we ruled out Lupus, but not 100% yet. My doctor believes that it is an autoimmune disease he just isn't sure which one yet.

          But I need help trying to fix this. By the way I just turned 30. I need to be here to watch my children grow-up. How can I fix this?

          It seems as if you have something going on if your GFR to be so low. You can make the basic assumption (without taking a biopsy of your kidney) that your kidney is working 30-36% out of 100%.

          I would recommend seeing a wholistic practicioner or a DO doctor who can look at your whole body - not just one single test - and help you determine where this kidney disease is coming from.

          If it is autoimmune....there are some amazing, natural ways to help this.

          First, what is autoimmune disease? In a very simply way...your body is hyperfocused on cleaning your gut and repairing all the damage some food might be doing that it can't focus on anything else. So you may find that you get sick often, or you have skin issues, or you have horrible gas after you eat, this list is endless...

          So what can you do about it?

          1. Determine the foods that cause inflammation in your body by "resetting" your body and slowly adding in ONE food at a time for 3 days and assess how you feel. It takes time, but it's well worth the effort.
          2. At the same time, meet with a wholistic doctor who can take blood along the way and see how your body responds to the new diet.

          Lastly, you don't have to become a vegetarian.

          I eat Paleo (veggies, meat, fruit - all natural/organic foods) and I have been able to keep my GFR at 15 for over 5 years!! AND avoid Dialysis!!

          I am also a certified Holistic Health Coach and I help teach moms with kidney disease how to find the best diet for their bodies that reduces the toll on the kidneys and helps them feel better, so they can be fully present in their lives, care for their family, and finally live to their fullest potential without being limited. If you're interested in learning more, please visit my page, https://www.experiencepaleo.com/holistic-health-coach/

          Comment


          • #6
            Hey there. Don’t freak out. Having a creatinine under 2 you can make it another 5 to 10 years if you play your cards right. You NEED to watch your diet first and foremost. No milk, dairy. No coffee, energy drinks.Low protein, Low sodium, low phosphorus. Make sure you ask your doctor to prescribe you phosphorus binders (ie calcium acetate, reneged, renvela) and take them faithfully as if your life depends on it. Because it does. Next, get a biopsy done on your kidneys immediately. You can find out what is going on there...ie what type of kidney disease you have. The best way to prolong the inevitable is to watch your diet! Don’t freak out just yet either, there is always transplant and dialysis. Dialysis can keep one alive for up to 25 to 30 years if you play your cards right. Feel free to reach out to me anytime!

            Ed Leiske
            Edleiske@yahoo.com
            510.717.8820

            Comment


            • #7
              Thank you Ed, I just read your reply to 'Kristinz' recently and everything you said made ME feel better! I am getting fairly blue about my CKD. Im so tired.

              Comment


              • #8
                Well all I knew is I had chronic Kidney Condition. Than I found DaVita and did the GFR calculator found I was stage 4. So I wrote my doctor and said what happen to stage 1- 2- 3 he said you have been stage 3 and 4 since 2010, but you are stable. What really does that mean stable, I am at stage 4 GFR is 23 - 3 months before it was 24. I am confused 90 year old woman. Trying to watch Protein - Salt - Potassium - Phosphorus. very confusioning. I get tired and back problems ( arthritis) . I guess I just keep plugging along. .

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