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  • Big Drop In GFR

    Hi, I've been a member of DaVita since 2010. I was diagnosed with stage 3 my GFR 57. I have bumped up and down over the past 3 yrs. last April I dropped to 53 on my six month check. My Dr. tried but I did not qualify to see neph. Now my Sept GFR is 33 and I'm having lots of issues with nausea, sweats, flushes, severe headaches and BP is intermittently unstable. My Dr is now scrambling to get me into a neph, in my area the wait can be up to a year. I'm really scared because 1-I did not see this coming and 2-what will happen in the next 6 months. I don't have 20 points to play with...if it drops again like it just did I'll be on a transplant list.

    I'm a 65 yr old female with significant health issues but not heart or diabetes, mainly thyroid, gastric, BP and severe joint issues resulting from OA. Restricted use of anti-inflammatory and NSAID. Recently put on Butran for pain.....prescribed medications have been checked for use with CKD.


    Has anyone been through this scenario....I truly expected to chug along for years without any issues.

    Thanks

  • #2
    It looks like you are moving rapidly, if not already, to ESRD End Stage Renal Disease and in need of dialysis. It's rather insensitive that your health system would not have you seen by a nephrologist already, like two years ago! It sounds like you'll enter dialysis via the Emergency Room instead of gradually and with a matured fistula. What health system are you in? That one should be avoided. When you had CKD (Chronic Kidney Disease and it was determined you were losing more and more function to Stage Three, they should have been preparing you for dialysis.

    All that "shoulda" aside, at 33 GFR you are clearly Stage 3 and moving toward stage four. Here'e the stages:
    1 Kidney damage with normal or elevated GFR ≥ 90
    2 Kidney damage with mild decrease in GFR 60 to 89
    3 Moderate decrease in GFR 30 to 59
    4 Severe decline in GFR 15 to 29

    5 Kidney failure < 15

    It's possible you went into Stage Four recently and that explains the symptom you are experiencing or it could be due to another reason. At 33 you are close to ESRD. These are symptoms of CKD (from EMedicineHealth)

    Effects and symptoms of chronic kidney disease include
    :
    need to urinate frequently, especially at night (nocturia);
    swelling of the legs and puffiness around the eyes (fluid retention);
    high blood pressure;
    fatigue and weakness (from anemia or accumulation of waste products in the body);
    loss of appetite, nausea and vomiting;
    itching, easy bruising, and pale skin (from anemia);
    shortness of breath from fluid accumulation in the lungs;
    headaches, numbness in the feet or hands (peripheral neuropathy), disturbed sleep, altered mental status (encephalopathy from the accumulation of waste products or uremic poisons), and restless legs syndrome;
    chest pain due to pericarditis (inflammation around the heart);
    bleeding (due to poor blood clotting);
    bone pain and fractures; and
    decreased sexual interest and erectile dysfunction.

    Check with your doc and ask him/her if you should be getting prepared for ESRD and dialysis and transplant. It would be much better to ease into it than to end up in the ER with kidney failure.

    Devon
    Fistula - March 2008
    Began Dialysis - August 2008
    Fistula Revision - Feb 2011

    Dialysis Patient Citizens, Patient Ambassador
    NW14 ESRD Network, Patient Advisory Committee Member
    CDC Infections Control Discussion Panel Member
    National Kidney Foundation Peer-to-Peer Mentor

    Blog: www.DevonTexas.com

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    • #3
      Hi georde100, Your GFR certainly has declined rapidly but try not to panic. I would not wait 6 months to see the specialist--travel if necessary. After having all the tests, the Neph. can better tell you what to expect. Getting your blood pressure under control is very important. Discuss seeing a renal dietician. Your dip in GFR could be caused by other health factors and hopefully is temporary. I'm not sure that the severity of your symptoms are kidney related. Usually these kinds of symptoms come on at a later stage.

      Let us know how your doing. You are in my thoughts.

      Toni
      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

      Comment


      • #4
        Hi,
        I just want to know what does one feel when they are about to go on dialysis. I have a creatinine of 6.02, GFR 10&13(I'm of mixed race). I seem to have most of the symptoms already - weakness, itching, frequent urination, trouble sleeping and cramps. Basically, I just want to know if my days are numbered, so to speak, as to when i go for dialysis.

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        • #5
          I stayed at stage 3 for 6 years then it dropped to ESRD with functions of 10 to 12 for a year before I started dialysis in May 2012. My doctor said it was all about my labs and how I was feeling but he always told me that when the time came for me to be dialyzed that my body would let me know. That time came 4-14-2012 when I couldn't breathe and went to the ER my fistula wasn't matured yet so they gave me another month but they had to put in a catheter. Each person is different so don't panic get your doctor's office to call the neph have found that when doctors office call they usually see you faster.

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          • #6
            Hello,
            I am in a similar situation. I am in my late 40's and have been in stage 3 for many years and have been very stable. My GFR was hovering around 45.
            Now it has suddenly dropped to 33. I was taken aback by this news. I realize that dialysis is not imminent, but this was a real smack of reality for me.
            No more kidding myself that kidney disease will not really impact my life. I feel scared. My doctor once told me that once a decline starts, it can go like a domino effect. I am praying that is not what's happening. I don't have high blood pressure or diabetes. I have been followed by a very good nephrologist for years. I don't know why this is happening. Anyone have any words of wisdom. This is starting to seem like a bad dream. Though I know I am very well off compared to many on this board. Crap...I am really a kidney patient?

            Comment


            • #7
              Hello Strummer,

              Welcome to the forum. Please know that you are not alone and we all are here to support each other.

              I was told that I have CKD in 2008 October and my GFR was around 32 at that time. Recently, my GFR dropped to 23%. Please pay attention to your protein intake. You may want to talk to a renal dietician to find out what you can and what you cannot eat so that your kidneys can be protected a little longer.

              pal

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              • #8
                Hello pal,
                Thank you very much for your post.
                I am just so concerned as my gfr suddenly dropped so much. This was not gradual. I stupidly thought I was going to have a life without dialysis in my future. I am not eve 50 yet. Guess there is no way my gfr is not going to drop to 15 at some point here. I was already on high blood pressure meds for rental protection. I don't even have high blood pressure. I can't imagine what else other than diet can be done here. Wonder if there is any way my gfr can suddenly pop back up?? If so, I sure hope yours does too, pal!

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                • #9
                  I am age 65 too. Three years ago I was at 32 went down to 28 and back up to 33 in six months time. I have been seeing the specialist since that time. He told me to drink lots of water. I did over the summer and was put on calcitriol which regulated the Vit. D level since my kidney's do not change the Vit. D into the state the body can use. My parathyroid along with cystic renal disease is what caused my problem. A year and a half ago, I dropped 10 into stage 4, went up one after six months. In the last two blood works I have dropped 4 each time so I am looking at blood work in Dec. to be close to 15 when they will give me counseling from TOPs(don't know what that stands for). They will explain which method is best for me and put me on a transplant list. Hope this helps. I have some mild l pain in right kidney that is cause from some of the cysts pressing on something. My throat hurts a little when parathyroid is not regulating Vit D, calcium and phosphorous levels correctly. All regulated by calcitriol and what I am eating. I eat less than 2 ounces of protein a day in meat. I stay away from milk products and eat a lot of veggies and fruit. Breads and potatoes (which I have a hard time staying away from) cause a lot of my problems with nausea. I have headaches and my eyes are causing some problems from calcium deposits. The doctor has given me eye drops to ease this. My mother also had this problem year ago.

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                  • #10
                    I was at 33 two years ago and it was after a big drop. I am now 65.
                    I have gone down and up and back down after a kidney infection about two years ago. When I went down
                    I was at 22. Last year I dropped to 19 and this year I am at 16. I changed my drinking with lots of water after I dropped and watched salt content
                    and I went up a little. When I dropped to 19 last yea I started eating less meat and stayed at 19 at the next 6 month blood work. This last 6 months I have felt worse even though eating less meat I am down to 16. Not ready for dialysis yet. That magic number to get prepared is under 15., I have my kidney appointment this month and had found out my GFR from my reg.. dr. Since I am still making urine he said I should be ok but the kidney doctor would be talking to me about this. I am to have STOPs counseling about what type of dialysis I will be using that would work for my life style before my appointment. I too fear the big drop. I have had two One that was 30 and the last one was 10 in a 6 months period of time. I am working on diet and less salt intake to keep the kidney's as healthy as possible. Hope my story of slowing down the decline helps you.
                    My biggest comfort is my faith in God and knowing He made me and has a plan in all of this. Am I fearful? .Yes, but it is of the unknown and what I have to go through with doctors and dialysis. I pray you will get in to a neph soon. I have been seeing one for 9 years when they first thought my cysts were
                    cancer tumors and they were not. Then it was three years ago thatmy regular doctor sent me back to a neph. Mine is Cystic Renal Disease which no one in my family that I know of has.

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                    • #11
                      I know the fear. I had a kidney transplant 41 years ago and my function has gone down. I am on a low protein diet and low sodium diet. I pray that will help. I like you put it in God's hands. I am 60 was 17 at time of transplant and my kidney which is my father's is going on 90 years old. Keep the faith.

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