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  • New and confused

    Well I haven't even been officially diagnosed yet, but I'm pretty sure I'm at Stage 3 CKD which is very frustrating. I actually went to have a blood test done with my cardiologist on 7/29, but that night ended up in the ER. Turned out I had a big kidney stone blocking my urethra. So they put a stent it so it could drain and on anti biotics to clear the infection. I discuss with Uroligist and decide we are going to to lithotripsy on 8/16. I go on for pre-op blood work on 8/14. Everything went fine and I did have another stone on other side, not as bad but knew once things settled down we would get that one done as well. So it was scheduled for 11/9 and had pre-op labs done on 11/4. So I have follow up appointment with Urologist on 11/16 and we go over a few things no big deal and I ask him for copies of my last few labs. I see on the 8/14 labs I had an eGFR of 59, but on the 11/4 labs I had an eGFR of 35! I didn't even know what this was except if had a footnote saying if <60 for more than 3 months the chronic kidney disease is present. I was actually looking at these as I was walking out the office and he was as well and asked him about this and he said "you were probably dehydrated". However, the fact is why wasn't it even pointed out to me at all both times. Also on the second lithoripsy they gave me a copy of my urine test which showed 30 mg protein. Ok so now I go back and look at the first blood test on 7/29 with the cardiologist and it shows eFGR of 53. By the way I forgot to mention I did have a follow up appointment with cardiologist in 9/9 and he never mentioned this either. Just said keep on doing what you're doing, eat right, lose weight and see you in two months. So here's how the numbers went in summary:

    7/29 – labs from caridologist show eGFR of 53
    8/16 – labs from pre-op show eGFR of 59 (this was done for a kidney stone lithotripsy done on 8/17)
    11/4 – labs from pre-op show eGFR of 35 (this was done for a kidney stone lithotripsy done on 11/9)
    11/9 - Urine test show 30 mg protein.
    11/20 - I was in the ER with fever and while I don't have copy of report yet the Doctor told me my eGFR was 48

    I understand about the hydration thing, but it seems like a wide swing for this number to be going up and down like this. Also weird that if hydration is an issue that it would be 48 when I have a fever of 104 as I would have been very dehydrated.

    Any thoughts on this would be much appreciated. I have appointment tomorrow with Urologist to discuss and next day with Cardiologist. I know I'm responsible for my health and I've been warned many times I needed to lose weight and lower blood pressure, but I just don't understand why through all of this no one has said anything.

  • #2
    Your Gfr will fluctuate depending on diet and lifestyle. Ive had CKD stage 4 for over a Year now (diagnosed) im 47 years old. My Gfr started at 20 and fluctuates. The highest its been is 40. Im not sure exactly what it is now as i. Over due to be tested again. Pay attention to your body. Ive found the more swollen i am the lower my Gfr is. I also break out in rashes from the poison in my body. Lately ive been passing small stones and small amount of blood. A recent kidney scan showed my kidneys have shrunken. This is to be expected. When a organ is not functioning well it shrinks. Ive learned to drink lots of water, no salt and eat a kidney friendly diet. You will be surprised on how a lifestyle change can raise your Gfr. My kidney doctor did nothing but my lifestyle change helped greatly. I wish you the best. Im sorry you have to deal witb CKD. It can be tough at times. I do hope you have a good support system. Best wishes

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    • #3
      good morning I am scared ,My doctor has told me my kidneys are disfunctioning .and I would like to know if there is any way I can eat or do to get them back to working right all and any information is excepted
      thank you
      jazzy 76

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      • #4
        You need to get more specific information. "disfunctioning" does not tell you much. With some testing you should be assigned a certain CKD stage (Chronic Kidney Disease) based on your age, body mass, race and medical issues. There is a healthy diet specifically for kidney health. You will find many recipes. First thing is to get specific information on your kidney function, and get referred to a Nephrology specialist. Do not put this off because if you are not careful you may continue to deteriorate function and require more advanced treatment methods. Good Luck and come back and let us know what you learn.

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        • #5
          Originally posted by Jazz1940 View Post
          good morning I am scared ,My doctor has told me my kidneys are disfunctioning .and I would like to know if there is any way I can eat or do to get them back to working right all and any information is excepted
          thank you
          jazzy 76
          Hi Jazz1940, welcome to myDaVita! I'd definitely recommend directing any specific questions you have to your local care team. Everyone's needs and situations are different. You can also attend a no-cost Kidney Smart class in your neighborhood to learn more about kidney disease, the treatment options, diet and more! Find a class near you here: http://bit.ly/2axNzHn

          I hope you have a nice weekend!

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