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GFR 21....Anyone Been There?

Posted , 10 users are following.

rob96807
rob96807

I have had pretty low GFR for the last 2 years.  If I go on steroids I can get it up to around 45.  Outside of having side effects from steroids, etc I do not have any symptoms.  The doctors say one say a transplant/dialysis will be needed. 

I am just curious if anyone has had something similar to this where they have no issues from the low GFR.

 

0 likes, 19 replies

19 Replies

  • louise5027
    louise5027 rob96807

    Posted

    Hi. I have ckd 3 and my Gfr has been around the 48/60 mark for the last 15yrs since diagnoses. I have a fairly healthy lifestyle and don't drink or smoke. I have dangerously high blood pressure which is controlled perfectly with medication. I don't have any side effects at all, I may get the occasional infection but no more than the average female without ckd
    • john85166
      john85166 louise5027

      Posted

      Louise

      You are so lucky to have stabilised for 14 years.  Although that sounds like quite a swing from 48 to 60.  You must be doing something right and I only wish I knew the secret.  

      I spent most everyday thinking how to nurse my kidneys with clean foods and rest and exercise.  My gfr is 20, having just dropped to 18.  All caused (what I'm told) by high blood pressure.  I hope I can stabilise for years yet because I only just retired and would like to live my dream retirement wishes, for a little while at least.

    • louise5027
      louise5027 john85166

      Posted

      John,

      Thank you, i was very lucky that my blood pressure was controlled as soon as my new doctor thought it might be related to the kidney. I had seen other doctors before who just put it down to the contraceptive pill without any investigations. My urologist suspects that the damage may have been caused I in childhood with untreated Uti's. I do try to lead a fairly healthy lifestyle but unfortunately where I live the fruit and veg isn't great quality so I just do my best which is all any of us can do.

  • trollking
    trollking rob96807

    Posted

    My GFR is normally around the 30 mark although yesterday it was 18 (eeek) but im hoping that was due to having a virus / sore throat etc when i had the blood test.

    My low gfr has the effect of being unable to concentrate properly, "not with it" feeling almost like i have had a few brandies, strange feeling

  • helen54849
    helen54849 rob96807

    Posted

    Hi,

    I didn't really feel the effects til I was 12% each time you drop your body gets used to it and you reajust and get on ok.  By the time I was 12% if I sat down I would go to sleep and even the thought of food made me sick.  I'm on dialysis now and feel much better smile

    • rob96807
      rob96807 helen54849

      Posted

      That is interesting.  I had those same symptoms a few weeks back, but they could not figure out the cause.  I had just gotten off of steroids so they thought that was it.  They did just put me on 5 mg of steroids and that seemed to get me feeling better, but didn't really do anything for me as far as the kidney function goes.

    • helen54849
      helen54849 rob96807

      Posted

      Hi,  Yes it is interesting the steriods are meant to make you feel better (They wouldn't have done anything for my condition so I never had them) Have they said what your creatinine levels are, the higher it is the worse state you are in mine was around the 500 mark (they measure things differently in the UK) and my GFR was 9% when I started dialysis. With the steriods I think they are given to preserve kidney function rather than increase it, the only way it would ever increase would be if you had an acute illness of your kidneys sometimes people can go on dialysis for a short time to help repair the kidneys but for the majority of people once kidney function declines thats it sadly.  At least there is dialysis and transplant now up until 60 years ago there was nothing that was done so we are lucky.

       

    • rob96807
      rob96807 helen54849

      Posted

      I will go get another creatinine test next week. My last test a month ago was 3.1. Higher doses of steroids can get it down to 2, but I have been taking them too long so that is why I am off for the most part.
  • realsis
    realsis rob96807

    Posted

    my GFR is 29, so I'm only 8 points above you. However I'm experiencing having to urinate at night every single hour, I'm swelling in one leg larger than the other, I feel as I can't catch my breath, I'm very fatigued from sleep interruptions. Count yourself blessed if your not having symptoms yet. I put in to get a new kidney doctor so it's been over 6 months since I've had my GFR tested. I could have dropped. six months ago I did not have these symptoms . they came on me within the last two months. my general doctor took some tests and will be referring me to my new kidney doctor but I won't know my new GFR until the 13th when I see him again. Things can change FAST with symptoms so count yourself blessed. Hopefully you can continue without having any!! That would be wonderful for you!! I wish you the best.
    • trollking
      trollking realsis

      Posted

      Hello, i have messaged you in another forum post before reading this one, keep me posted on how you get on :-)
  • RhondaS
    RhondaS rob96807

    Posted

    Hi Rob I am only at GFR 38 but have no symptoms.  Sometimes people don't have symptoms  until right before dialysis.  Mot people with CKD will need dialysis.  Has your doctor talked to you about your dicisions for dialysis yet?  Sometimes people don't go to dialysis until about GFR of 10 but get prepared before that so they are prepared,  Steroids of course give your kidneys a break.  Not sure why they won't put more people on them.  If you get a transplant I believe that they use steriods so you don't reject you kidneys. 
    • helen54849
      helen54849 RhondaS

      Posted

      Hi,

      You only have steriods for a short time, you take anti rejection drugs for life.

    • RhondaS
      RhondaS helen54849

      Posted

      Helen sometimes prednisone is used for an anti-rejection drug after transplant but others are also used. 
    • helen54849
      helen54849 RhondaS

      Posted

      Rhonda, I am well aware what drugs are used they are not necessarliy used long term (only the anti rejection) the steriods are stopped after a while.
  • HollyMarie1984
    HollyMarie1984 rob96807

    Posted

    For a long time I had no symptoms. I was in stage 4 from age 16 to 30. From ages 16 to 26 I had little to no symptoms. However, at 26 I started to get tired a lot and yo-yoed with a little weight gain and then loss for a couple of years. By age 28 I was experiencing a lot of symptoms and I now am 31 and it is hard to manage. I am in stage 5 now and I have my transplant next month.
    • trollking
      trollking HollyMarie1984

      Posted

      Holly, please keep us posed on how that all goes, how long was you on the transplant waiting list ?  Are you from the UK ?
    • HollyMarie1984
      HollyMarie1984 trollking

      Posted

      I am from the USA. I have been on the transplant list for a little over a year. I am getting my kidney from a living donor. I was told if I didn't find a living donor I would be on the wait list for 6 years because of my blood type. I am B+ the + doesn't matter but I guess a lot of people with B's don't donate often at least in the USA. My cousin is O+ so she is universal and was a 95% match for me and we were going to do it until my coordinator found a perfect match for me. We are doing a paired exchange. 3 donors and 3 recipents. My transplat is scheduled for next month Feb 23rd is the surgery date. My donor is a male from Florida and that is all I know. I can assume he is around my age. My coordinator let it slip he was a he. But I already knew they were from out of state.
    • yehyeh
      yehyeh HollyMarie1984

      Posted

      hi holly marie

      you in stage 4 ckd so long from age 16 to age 26. that was 10 years?

      how u able to do that? mind sharing?

    • HollyMarie1984
      HollyMarie1984 yehyeh

      Posted

      I got ckd from a rare strain of strep throat. I was healthy otherwise. I do like junk food such as pop also called soda but I am from the Midwest and we call it pop and I love chocolate and chips but I also eat a lot fruit and vegetables. I never smoked and I can count on one hand how many times I've had alcohol in my life. I never did any recreational drugs either.
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