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Thread: Gave Up on Facebook Groups

  1. #11
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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by GPA4Me View Post
    When I checked in to the hospital in 2017, my creatinine was 8 and my GFR was 6. I did dialysis for a year and when I came off, my creatinine was around 3.5. It started getting a little better over time and it has been anywhere from 2.14 to 2.8 over the past 2 years. So my GFR has fluctuated between 23% to 30%. I'm ok with that and just hope it stays there for a long time.
    Hi Larry. Welcome to the forum.
    Glad your kidneys healed somewhat after a year of dialysis.
    I hope your function stays above 20%. I found that once my function dropped to 18% it was a steady and permanent decline.
    Diagnosed April 1995

  2. #12
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    Default Re: Gave Up on Facebook Groups

    I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?

  3. #13
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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by GPA4Me View Post
    I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?
    My kidney damage was initially caused by decades of diabetes but Wegener's granulomatosis nearly finished them off. I had been told by my nephrologists that it is normal to lose about 5% kidney function each year as you reach a certain age. I have been fortunate for several years not to be experiencing such an annual decline but with aging and ongoing diabetes further loss of kidney function is most likely.

    One of our more active user years ago was Jack who often warned about the risk of losing your kidney function very quickly with little or no warning. That had happened to him. So it is important to monitor our kidney function on an ongoing basis.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #14
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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by GPA4Me View Post
    I can't explain it but a recent lab report has my creatinine at 1.96 now which gives me a GFR of 34%. Of course I'm very happy about that but need to accept that it may go down again one day. Until then, I'm going to embrace it and pray that it continues to get better. Do you have a DX of what is causing your decline? Is it from the Wegener's?
    Kidney function can jump around quite a bit, be it a different lab, what you've eaten and most importantly how well hydrated you are.
    Your best route to keeping kidneys healthy is to be well hydrated at all times, keep your blood pressure at a good level and if there is a disease/illness (e.g. vasculitis/Wegener's) that is "attacking" your kidney, get that disease in remission and keep it in remission.

    My kidney function decline was caused by Wegener's. I have had a long journey with Wegener's and in brief (sticking to kidney issue) I lost all function 24 years ago, but regained a good amount after treatment for Wegener's and about a month or two of dialysis. During those 24 years my kidney function was quite stable until I had various relapses which would knock a good percentage of my function off permanently. My function hit 18% around 5-6 years ago and at that point my function went on a steady downward trend even without any flares of Wegener's. I had my kidney transplant 2 years ago and as far as my kidney is, it;s going very well with a function that fluctuates between 42% and 49%.

    If you want any more detailed answers regarding kidney issues I'm here to help.
    Diagnosed April 1995

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  7. #15
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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by drz View Post
    My kidney damage was initially caused by decades of diabetes but Wegener's granulomatosis nearly finished them off. I had been told by my nephrologists that it is normal to lose about 5% kidney function each year as you reach a certain age. I have been fortunate for several years not to be experiencing such an annual decline but with aging and ongoing diabetes further loss of kidney function is most likely.

    One of our more active user years ago was Jack who often warned about the risk of losing your kidney function very quickly with little or no warning. That had happened to him. So it is important to monitor our kidney function on an ongoing basis.
    I would be really worried if I lost 5% every year. My nephrologist told me starting at age 45 you start to lose 1% a year. Several answers from a Google search showed a value that I believe works out to be 1%. This excerpt is taken from an NIH document.
    In the original studies of Davies and Shock the average decline in GFR was 0.96 ml/min/year or about 10 ml/min/decade (7). The filtration fraction (GFR divided by Renal Plasma Flow or RPF) tended to remain constant until about age 65 years and older (7).

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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by GPA4Me View Post
    I would be really worried if I lost 5% every year. My nephrologist told me starting at age 45 you start to lose 1% a year. Several answers from a Google search showed a value that I believe works out to be 1%. This excerpt is taken from an NIH document.
    In the original studies of Davies and Shock the average decline in GFR was 0.96 ml/min/year or about 10 ml/min/decade (7). The filtration fraction (GFR divided by Renal Plasma Flow or RPF) tended to remain constant until about age 65 years and older (7).
    So did your research suggests the rate of decline increases at the age of 65 and older. I was over that age with about 40% normal kidney function at the time so I understood the doctor to say if I lost another 5% of the 40% it would be an additional 2% loss and bring me down to 38% normal kidney function. Being an older senile citizen I may have misunderstood or recalled the statements incorrectly. I do remember being pleased that my annual checkups did not reveal any further decrease in my kidney function for several years and they even improved from my initial severe attack of Wegener's for several years.
    Knowledge is power! Wisdom is using it to make good decisions!

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