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.

26 Replies

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  • 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 START EATING A GREEN APPLE EVERY DAY TILL YOUR CREATININE LEVEL DROPS, in other words GFR will go up,

    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,

    dID U VISIT YOU TUBE AND FOUND ANY THING?

    SEND ME YOUR EMAIL ID ?

    PL WRITE ME BACK

    WISH U GOOD HEALTH

  • 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?

  • Hi Rabbit01,

    I am responding to your post, which i see is 4 months ago. Ihave always been a huge consumer of MEAT, with rice and potatoes. Anything vegetable was never eaten.

    We are all different and i do not think that a ONE SIZE FITS ALL is applicable to our illness, however i do believe that ones own mindset and a MEAT FREE diet should be tried.

    MY symptoms at Stage 5 are the following:-

    ITCHY SKIN- Maybe once a week, not all over, akin to a mosquito bite in one spot.

    FATIGUE and Out of Breath:- When having climbed about 20 stairs. Went to a PULMONOLOGIST WHO HAS GIVEN ME AN INHALER TO USE WHEN NECESSARY. THIS REALLY HELPS.

    BACK ACHE:- HAVE BEEN FOR ULTRASOUND, however the report says NOTHING REMARKABLE SEEN, OTHER THAN DETECTING A KIDNEY DISEASE

    THE ABOVE ARE THE ONLY SYMPTOMS THAT I AM EXPERIENCING.

    NORMANDY

  • Thanks very much for replying. Yes I certainly get tired easily and out of breath too. Like you I have been given an inhaler which helps a lot.

  • Hi, I suffer with exactly the same as you. My itchiness isn't there constantly just some times..but drives me completely bananas when it starts.

    Out of breath like I smoke 60 fags a day and could fall asleep pretty much as soon as I wake up, although dinner time is my worst time for going drowsy.

    Also my backache which I have suffered with on and off for many years. My GP says that CKD5 doesn't cause backache will be a strained muscle or something 😡😡 obviously I new what I felt and how I feel regular to be told by a pro I'm a liar. Didn't feel nice coming from someone who should be listening and giving advice.

    Hope you are well

    Xx

  • Thanks for writing back. Yes, I feel awful when I get up but I am generally ok by about 9 in the morning. There is obviously a technical reason for this but not one the doctors have been able to tell me about. My theory is the body does most of its repairs while we are asleep so a lot of waste products get generated and our ailing kidneys struggle to process it all hence feeling unwell in the morning. Like you around 6 pm to 8 pm is when it hits me hard as well. I don’t feel unwell at that time but boy do I feel tired. Lots of people note having backache with kidney problems so it sounds like you doctor is not well informed on that aspect of it. As you have described I get out of breath. Just walking up a short hill and I am puffing away. I got one of those blue inhalers and it helps when I do run out of air. My EGFR bounced back from 15% to 18% over Christmas and I did feel better but it has the gone to 17% and now 15% again . I guess it won’t be long before they are talking to me about what form of dialysis I should be on. I can’t stand needles either but I think the HD would still be better. I often get looked at oddly by the other patients in the kidney waiting room like “why is he here?” In my experience, they are all in their 70s and 80s. I am only 50 and I see you are only 28. What caused your kidney problems in the first place?

  • Yes I'm the same. It knocks be about dinner time but come the evening when it's time to settle down I get my second wind 🙄

    What you said, does make sense - the repairing whilst resting. I keep getting told to rest but have 3 children youngest being 3. So keeping busy or atleast on my feet in a day time makes it worth while when bedtime comes round. My breathing is the same, just going up and downstairs does me 😬

    My function has been the same Over the last month and a half... luckily. But creatinine levels are creeping up at the mo they are 414!

    To be honest I did want PD until I was stupid and watched the video. Stuff like that doesn't bother me as a rule but that made me feel sick also watching it being done with just local anaesthetic 🤢 Sooooo hate needles but it's just gotta be done hasn't it. I think exactly the same when I go to my renal clinic their all in between 60 - 80+. I was born with reflux something something lol.

    My mum is best to tell the technical term. I know I've only ever had 1 working kidney as the other is the size of a kidney bean and my "good" ( if I can call it that) is badly scarred. How about you. 😊

  • On my 48th birthday in Oct 2014 I got a chest infection. I remember it well as I felt so bad I came home from work early and thought to myself what a rubbish birthday I was having. The doctors gave me Amoxicillin and my chest infection started to get better but I started to feel odd and could not eat anything. I did notice my wee had a strong smell and I had a metallic taste in my mouth but did not worry about it too much, just assumed it was the after effects of the antibiotic. After a week or so everything went back to normal or so I thought. I then had a routine medical and as part of that they did a blood test and found my kidney function was 18% i.e. stage 4 CKD. The doctors think it was my own immune system that attacked my kidneys. It eventually stopped but the permanent damage was done. That was in April 2015. I cut out eating red meat, coffee, salt and cola. I started to drink a lot more water and lost some weight and got to the dizzy heights of 21% EGFR in August 2015 but ever since then it has been gradually getting worse. In September 2016 it was down to 15% and I was feeling so sick and tired all the time I could not function at work. I do a lot of computer work so they very kindly let me work from home 4 days per week and it certainly helped big time. I even bounced back a couple of % but that has now dropped again so I am right on the cusp of stage 5.

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