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  • Just finding out I have stage 3 kidney disease

    After my dr called me I couldnt believe it. I cried. I was very shocked. How does anybody deal with this kind of a diagnosis?

  • #2
    Re: Just finding out I have stage 3 kidney disease

    Hi Mysteryeyes. First of all I'm sorry about your diagnoses. I was diagnosed in May and it took me a little bit before it hit me. There's a lot of people here who are very supportive and will help lead you in the right direction.

    CKD Stage 3 GFR 56 diagnosed May 26, 2010


    • #3
      Re: Just finding out I have stage 3 kidney disease

      Hi Mysteryeyes,

      I know its hard to take the news when you first find out but its not the end of the world , trust me. I have been diagnosed 4 years ago stage 3 , non diabetic. I was shocked but then they told me I had it as of 2000 and did not know it because the doctor did not think it was serious yet.......do you believe it???

      Anyway, the bottom line is I have been stage 3 for the last 10 years and stable with creatinine average 1.1

      Are you diabetic???? how about blood pressure ??? what was your creatinine number?

      Keep in touch and ask all the questions you want everyone here is very helpful and with lots of information.


      • #4
        Re:reaction to initial diagnosis

        I'd like to include this post about your initial response to your diagnosis in a book about kidney disease if I may. You won't have to be identified.

        I know you probably want to check me out since you've never heard of me. My website is www.gail-rae.com. My blog is http://gailrae.wordpress.com. The book is about early stages of the disease and I wrote it because I felt so alone and lost when I was first diagnosed. I thought other people's initial reaction to their diagosis would be just as important as mine was.


        • #5
          Re: Just finding out I have stage 3 kidney disease

          I'm 68, female. I don't have diabetes. I have controlled BP. I'm in stage 3 CKF (eGFR = 37).

          I diagnosed myself. I just happened to keep all my blood tests for the last 17 years and I noticed my serum creatinine going slowly up. When it was 1.8 (2 yrs ago), I told my GP about it increasing steadily for (then) 15 yrs and now I was approaching the upper limit, which at that time, for that lab, was 1.0. Total disinterest.

          Found a nephrologist. After tests and ultrasound (kidneys are "smaller than expected"), he says "Oh you don't have to worry about dialysis till your serum creatinine is 7 or 8. You'll probably never need it. We'll do another ultrasound (2 yrs after the 1st one) and I'll see you in 2 years." Are nephrologists only interested if you need dialysis?

          I began to wonder what I should or should not be eating. Should I exercise & create creatinine for my stage 3 kidneys to have to deal with? I have bad knees & can't get much exercise now, but once i get a new knee or two, I'd like to go back to being pretty active. Should I??? Or am I now an invalid, having to not exercise much, and eat just enough protein to keep from getting malnutrition? I don't have any idea. I feel my doctors aren't concerned enough. Shouldn't the nephrologist have sent me to a dietician? I'm 68 but except for my knees I feel 45. I don't want to just deteriorate.

          And then there's this business of the ACE inhibitor. I've been taking an ACE inhibitor for years, along with a diuretic since 1984 and they've controled my BP very well (it runs more or less 117/78). I know if you have high BP and you don't control it, that in itself will destroy your kidneys. But now I read about the Triple Whammy: NSAIDS, ACE inhibitors, and diuretics. I took Naprosyn for (I think) 7 yrs in the '90s. Nephrologist says this is probably what damaged my kidneys (no family problems). Now I'm told by many medical sources on line that ACE inhibitors and diuretics do kidney damage, but the Nat. Kidney Fdn says "Use ACE inhibitors and diuretics." They don't even mention the Triple Whammy. Who's right?

          I don't eat much, trying to keep my weight "down" (5'6", 144 lb), mostly dairy products, some frozen Mexican food, some meat, not a lot of carbs, and fruit. Probably too much sugar, but less than before. I guess I'm getting all the amino acids I need, but if most of my diet is dairy, am I overloading my kidneys with unneeded proteins? Should I drink more water? Less water? How can I find out the efficiency level of my kidneys? Is GFR a measure of % efficiency?

          I live alone, which doesn't help. I have no support. After looking at the Nat. Kindey Fdn site and calculating my GFR & finding out I'm in stage 3, I'm freaking out because I don't know what to do.


          • #6
            Re: Just finding out I have stage 3 kidney disease

            Hi ruby2zdy, At stage 3 maintaining a healthy diet that is right for you is important. It would benefit you to see a good dietician who can help. I believe most insurance will cover that. Don't try and cut out the protein. Our bodies have to have protein, just not as much as most people consume. What got my attention is you eating frozen Mexican food. Frozen food is very high in sodium therefore a big no no. Sodium is difficult for the kidneys to process plus too much is really bad for people with high bp. You have to read labels because sodium is in alot of food. The Northwest Kidney Centers state that people should keep daily sodium under 2300mg daily. 1800 if you have high bp. If you see a dietician you should get lists of food with the nutritional information which makes planning much easier. Drink several glasses of water a day. The 8 8ounce rule still applies at this stage unless your Dr. says otherwise.

            You must take your bp meds and all prescribed meds. Your right, there is a slight risk of these meds adversely affecting your kidneys but theres a huge risk of further damage to kidneys if you don't. Also uncontrolled bp puts you at risk for heart attack and stroke. Use only Tylenol for pain.

            I think it's pretty common to have a GP look after you at stage 3. That Dr. will normally repeat blood tests 2 to 3 times a year depending on your circumstances. I'm not sure how often Medicare will allow repeat testing. ( I'm 59 and not quite there) If at any time your bloodwork shows a fast decline, I'm sure your Dr. will send you back to the specialist.

            The next time you see your GP have a written list of questions prepared. Make it clear that you want to do everything you can to help yourself. And take someone with you to help you remember what the Dr. says.

            It takes awhile to accept this diagnosis but it does get much easier with time. It helped me alot to find this site and others. The more I learned about ckd the more I realized that finding out early was a blessing. By being proactive at stage 3, slowing the progression is very predictable. Keep sharing your feelings with us on the forum and ask any questions you have. We understand what your going through.

            May you always have Love to share, Health to spare, and Friends that care

            Acute Kidney Function Loss 12/07 - GFR 39
            Current GFR 46 - Stage 3 - Controlled HBP


            • #7
              Re: Just finding out I have stage 3 kidney disease

              Thanks for your fast answer. Finding a good kidney dietician seems to be my next step.


              • #8
                Re: Just finding out I have stage 3 kidney disease

                I was diagnosed about a month ago with stage 2 CKD. Shock seems to be the common experience. This site has been very reassuring to me. I hope it will be for you as well.


                • #9
                  Re: Just finding out I have stage 3 kidney disease

                  So sorry to hear that you are joining out group if only to watch and wait for the rest of your life. People who find that they have CKD often can reverse their standing some. Maybe fro stage 4 medium to stage 3 high. Diet, fluid and exercise, meds as necessary and otherwise normal life can and do continue. Get educated, go to kidneyschool.org and others, but thats a good start and get a notebook and start to keep records of everything that happens to you and also how the disease progresses and how life in general is going. Keep in touch here and with a great deal of trouble you can get a Nephrologist that will give you more time but understand that they are bound by the insurance laws as to what they will pay for and what they don't you have to. This is not a cheap disease, on the contrary its high. But you also can use the internet and support organizations like this one and build your own stager 2,3,4 fighting regimes.
                  Depression comes with this more often that people think and you need to be aware of that and get treatment for that if necessary, A person who does not feel good and does not believe that he/she is ever going to feel good again, seldom does. Their life span is also shortened, it just seems longer.
                  May God have mercy on us all


                  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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