Just going into CKD stage 5 and need your advice please

I have been a steady 18 EGFR for the last 16 months and I had my latest blood test on Tuesday and I have dropped three more % points in the last two months which now takes me down to 15% EGFR and so just going into CKD stage 5. I don't have my next appointment with the nephrologist till end of December although presumably she will see my latest blood results. Do you think I should see if I can get the appointment with her brought forward or just leave things as they are? Aside from feeling tired I am generally well most of the time and still work full time. I really have no idea what to do (if anything) as I enter this stage so any advice will be most welcome.

20 Replies

  • If it were me,I would check with the consultant before December. It's okay to have lengthy periods between appointments when the eGFR remains stable for a long time but I think I would want to check there isn't something going on to cause a sudden drop of 3 points just in case it is something that can be corrected - blood pressure, blood sugar etc. Very best wishes.

  • Thanks very much for the good advice. I am seeing the GP tomorrow morning.

  • Hi, after the last chat you were due for your check up, when I hadn't heard for a wee while I guessed something might have changed. Im sorry to read that you have moved to stage 5. Hopefully, someone at Stage 5. reads your message and is able to put your mind at rest. Although I would agree with reply from "Celtic". Take care, I will follow your progress.

    Doreen (dorry65 )

  • Thanks for writing back Doreen. The last time I saw the consultant was mid August and I was still at 17% although that was down 1% from the test before that. It was only after last weeks blood test that I was at an all time personal worst with 15%. I have had so many nice replies with sound information so it is really good to be part of this forum. Hope things are good with you.

  • This is the stage that they talk to you about dialysis options they will send for you if they think you are suddenly dropping a lot faster than they expect just try not to worry they may just ask for a repeat of bloods next month or 2 weeks time it all depends really

  • Thank you. I have been called to the GP tomorrow morning so I envisage the consultant has asked them to do another blood test. Thanks for the advice.

  • I moved home some 6 years ago. My new consultant advised monthly appointments and blood tests as my EGFR had been declining quite rapidly (50% down to 20% in about a year). My new results started to fluctuate and when I asked about this he said that results can vary by 1 – 2 %. It could be that your result was just such a fluctuation. I would certainly check that there are no other problems. I too get tired and no longer have the energy levels that I once had. I’m now retired – aged 71 – but try to stay active. I’ve been fortunate that I have stabilised around 18% EGFR and now have an estimated date for dialysis in 2045!

    Best wishes.

  • Thanks for writing Yes I guess it could be just a fluctuation and I have been told before that there is a couple of % tolerance either way on the results but that said a year ago I was up to 21% from 18% at diagnosis which I put down to life style changes (cut out all salt etc) So to get down to 15% is quite a shock I hope you continue to stay at 18%.

  • Your results do fluctuate. Remember when I first started this I was at GFR 12! Now with changes I am at 17. If it would put your mind at ease, I'd say go see your doctor. DONT PANIC! You are still in a good place. I too get tired more easily and sometimes my back gets tired but just keep going. You can bring it back up!! I drink lots of water. I take a lot of supplements. If you want to know what they are let me know and I'll be glad to share with you. As always, prayers for you. God can do anything!!!

  • Thanks very much Bunkin. Yes I know how well you have done. I will concentrate on bringing the levels back up. First thing is that I am going to cut my hours down at work. I get a lot of stress from work and I don't think this is helping me at all. So new start, starting from Monday! Thanks as always for your support. Will keep you update and you do the same for me. Take care.

  • Work is stressful, that's for sure. I'm in process of looking for another job that's less stressful!!

  • Went to doctor today. Labs are much improved all across the board. Doctor said it was spectacular😀😀😀 you can do it too!!! Prayers for you. God can do anything!!

  • Wow that is great news Bunkin, I am really pleased for you. I think I need to spend less time worrying and more time in prayer.

  • Hi

    I'm 55 yrs old egfr 5 and not yet on dialysis. Like you I feel generally well except I do get very tired. My next appointment with my kidney consultant is early December. I have everything planned for home haemodyalisis which will kick in when I need it.

    The most important thing i feel is to be fully aware of your options and well informed of your prognosis. Then you can feel confident that everything is covered and can get on with enjoying life in the meantime.

    If you feel you need more information then certainly contact your kidney unit. You should have a particular renal nurse assigned to your case who you can contact with questions. I find that they have more time than the consultants.

    Best wishes, Hoping it goes well for you. Margaret

  • Thank you Margaret for writing back. I am just coming up to 50 years old. You are doing incredibly well at just 5% EGFR, I did not know it was possible to function at this level so that has calmed me down somewhat knowing that (with luck) I still have a way to go. I don’t have a renal nurse or anyone assigned, maybe I will do now as I go into stage 5. I see the renal consultant once every four months but as you correctly concluded she does not have much time to talk to me and after a quick review of my latest blood tests she packs me on my way. The whole session only takes about 5 to 10 minutes. We have never discussed progression of my kidney failure or options for treatment but then I have been a stable 18% or so since diagnosis back in April 2015 so I guess she did not want to worry me as it was imminent. Thanks very much for your support and advice.

  • When I asked my doctor about transplant and dialysis when I was at 15 GFR, he said not even time to think about that yet, so don't worry rabbit01!!

  • Go to you tube and type " ginger treatment for kidney failure "


    ALSO WHEN U VISIT YOU TUBE, TYPE 'apple cider vinegar ", start using it

    Doing so my GFR rose from 28 to 98 , this no doctor will beive,

    wish u good health

  • Thanks very much for writing back with your advice.

  • are u taking kidney friendly diets ?by now u must be knowing what to eat n what not to eat,

    i think your doctor has mislead you,

    I was able to boost GFR by resorting to apple cider vinergar Brew and and GREEN APPLE IT TOOK ALMOST 2-3 MONTHS FOR ME TO DO THAT,





  • To Kithsirid, I don't believe that you went from 28-98, why did you ask for the person above's private email, this forum is suppose to be a safe haven for us to talk to one another?

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