Hi, I’m Gill. I found I had CKD four years ago when I had spinal fusion surgery and it was listed as an ‘ailment’ on a letter from my surgeon. This seems to be the accidental way many people get to hear about their kidneys. There has been no help or guidance from my GPs who have said that nothing happens until stage 4 is reached.
Kidney Research UK has been great and the latest magazine gave info on this forum.
I’ve moved from 3a to 3b and want to halt progression if possible - Google gives such conflicting advice and I’m hoping I’ll learn more from here.
I’m 76 in May, my body feels 96 but my head is 36. I’m good with things like salt and processed foods but need to know and do much more. The urge sometimes becomes too great and I can hoover a bag of crisps in seconds - it doesn’t happen very often but it is SO satisfying and I can smile like the village idiot before reaching for the Gaviscon.
A diagnosis of Scleroderma years ago is the probable reason for my CKD along with heart failure, inflammatory arthritis, oesophageal problems etc etc. The things I find really hard to live with are the extreme fatigue, constant pain and lack of sleep which dictate daily life. Hate it because my brain is skipping through the buttercups and running marathons.
I’ve had hearing aids fitted today too which my family thinks is unfair because they can’t make fun of my misheard words any more The neighbours, I’m sure, will probably love the lower TV volume! Seriously though, the aids are feeling life changing already.
The next step is a mobility scooter (GP suggestion) which I’m putting off as long as possible and the family think I’ll be a menace too making motorbike noises as I rush along at 4mph. I’m still of the opinion that I can throw away my stick soon and walk miles with the dog.
I’ve written a lot haven’t I? An attack of the verbals but then it is 4am and I’ve nothing else to do. Sorry!
Hello Gill. Welcome to our forum. I am well acquainted with 4am so I am getting through a novel every 2 days. I hoover cheeselets which are no longer bought by my wife as there are never any left when see wants ONE ! Your symptoms are the same as mine along with which I used to get intolerable itching on my arms ,legs , and back. Fortunately, Eurax cream cured that. I too have hearing aids, which I seldom use as I enjoy the peace and quiet with my book.Also, people have stopped asking me stupid questions as I just look at them blankly and I always said ‘Pardon, speak up’. I too would pass on the mobility scooter as I know what I have thought about them in the past, and they are really just for old people , which at 80 , I consider to be A time in the future that I will never reach. I am EGFR21 unless my bloods tests today show something different, fingers crossed
The dietary question is messy on Google with so much conflicting comment. My advice would be to watch your potassium levels and avoid foods in that group, Bananas, Tomatoes, Dried fruits, nuts and Marmite and Bovril . Cut down on dairy products and watch your salt intake. Eat white and not granary bread and also use white pasta. The best online advice is on the NHS hospital sites as others a often vague and contradictory. You will always get some advice on here.
You appear to have retained your sense of humour which is great, and welcome to the wee small hours being greeted by the dawn chorus and sunrise , which those poor people with jobs probably miss entirely. Best wishes B
I’ve been on the overnight machine since June 2025. It can be a little tricky getting your prescription right at the beginning. I also found this when I did manuals. From what you described it sounds like you might have some fluid overload but best to mention to your pd clinic. You might just need a tweak in your prescription and a stronger bag to help with fluid overload. It does get better and you will quickly learn what your numbers should be, or there abouts. After a week, it’s still a bit trial and error. But do keep an eye on any swelling. Good luck!
Hi, I’m Gwennie from Wales and was only told about my diagnosis of CKD by a locum Gp, and my normal Gp told me not to worry it’s normal as we get older, I have a wide variety of health issues and am classed as disabled due to a few of them. My main interest would be food ideas as I am a fussy (old fashioned) eater. Looking forward to learning more
Hello, I am Bob (78 yrs). I was diagnosed with CKD about 3 years ago via a regular blood test. In autumn last year my kidney function eGGR was down to 35 (Stage 3b) having lowered 5 points in the year. Someone told me a kidney friendly diet could delay or even halt decreasing function. I’ve completely overhauled my diet with recipes for Kidney Research and my own researches on line. But I would like a trained kidney dietitian to check my findings. My GP has failed to find an NHS dietitian. Does anyone know how to find a private one? Before my new diet got going I had a weird pain in my mouth, as though my tongue had been stuck on an ice cube and ripped off. That’s got better with the diet. The itchy patch of skin has got better with the use of skin cream every 4 or 5 days
I discovered I had kidney disease when the nurse at my annual HBP review gave me a leaflet about Ramipril and kidney disease; it was quite a shock! Since then I have checked my results online after every review and my results keep going down (now at 3b 43 and creatinine is 117).
I am concerned that apart from minimum advice about losing weight as I am obese, I have not had any support from my surgery. I go and have tests annually for blood pressure, cholesterol and kidneys but no one discusses the results with me!
I am 64 and work part time.
I swim and walk in the pool but struggle with other exercise as walking far is difficult. I also get excessively tired.
I did try mounjaro last year (paid privately). I lost 2 stone but the side effects became too much to cope with as I was projectile vomiting on 5mg. However, while I was on 2.5mg I had a lot more energy and was able to walk quite long distances as any inflammation in my legs disappeared and my joints stopped hurting (knees, ankles).
I mentioned the weight as it links to the high blood pressure and decline in my kidneys.
Have other people had more support from their doctor’s surgery when they were diagnosed?
I have Stage 4 as kidney transplant 2018 now failing. Im 72 Years young. Main issues itching and oedemic legs but mostly fatigue. No chance of marathon this year!
I find that using a skin cream or moisturiser on the itchy patch stops the itching for 3 or 4 days. And strong compression socks bring relief to swollen feet
Thanks for the excellent advice Beanbag. I would be grateful for mention of any NHS sites on kidney nutrition. My Google/AI searches have come up with very similar food results to yours. Especially, and oddly I think, pasta. I eat it often and you can tell the tummy feels happy. There’s less of a war going on in there, less rumbling and flatulence as the kidneys fail to digest the food I guess. But the advice I found was clearly whole meal bread. It goes through quicker! Happy to be scientifically enlightened. I make my own soft brown whole meal soda bread without salt. The family loves it
Hi @robertsgworkman! Welcome to Kidney Community, so wonderful to have you here.
Thank you for sharing your kidney connection. It sounds like you are super proactive, especially with your diet. Would love, if you would like to, for you to share some of the info you have found over in: Your top tips for eating well with kidney disease.
Hi @Joanna! Huge warm welcome to Kidney Community, so thrilled you have joined this wonderful group of people .
Thank you for sharing your story. It’s completely understandable to feel unsettled when seeing your results decline without anyone really talking them through with you. It sounds frustrating to have so little support despite doing your best to stay active and make connections between weight, blood pressure and general kidney health. You’re so very welcome here and hopefully others can share how supported (or not) they felt after diagnosis
I am sorry to hear that your kidney transplant is failing . We are all here to help support you through this tricky time.
I hope you can find some useful information here on this forum relating to transplants, fatigue and even itchy skin. One of our users recently started a new topic on itchy skin, which is worth checking out and joining in the conversation.
Hi I’m sorry to hear all your problems at the minute I really hope you get stable soon . It’s really hard when family don’t understand or don’t want to discuss it maybe sit them down explain what’s happening and how your feeling if they still don’t want to engage everyone on here will understand and I’m always on hand any time for a chat ti listen to you if you need it welcome to the community
Hello. I am 67 and had been ill and undiagnosed for some time until February of this year when my doctor told me I had level one CKD and slightly high cholesterol. About 6 weeks later I discovered the pills he gave me for HC can cause kidney damage. So I had more tests and sat down with the nurse asking for my stats, as to date I have been given no actual advice and have been learning off the internet. She told me my original CKD reading was 58 - back to the internet to find I am actually Level 3a.
I have been very disciplined at changing my diet etc, but am struggling to keep you the momentum without more info on potassium levels etc though I have lost 12lbs in weight! Yay!! I am hoping I can pick up some advice from you lovely people. Keep smiling!!
Hello, Welcome to our forum. I understand. Potassium level is very important, but can only be checked out with a blood test. I would try and get one at your surgery every 6 months. I t sounds as if you have researched the foods to avoid , what to eat and what not to. The other important points are keep your blood pressure under control. You can get an Omrom machine from Amazon , about £30, and do it at home. Next keep hydrated, try to drink about 1 1/2 litres of liquid a day. You can use squash , but avoid High juice and Double strength versions and Ribena. Finally, cut down on dairy products. Good luck and come back if you need further comment. Best wishes B
Thank you for those kind words. I am going to my renal consultant next week to find out what is happening.
I just get so cold and s tired but I have to look at the positives. I have a very supportive husband and family and I am still here.
Kind regards
Maureen
My name is Jean-Claude and I am a CKD patient for 10 years now. I went from dialyse to transplant. I was recently informed that my kidney function is declining… I just discovered the Kidney Community and decided to join as we now belong to the same family to seek advice, share experiences and learn from others members.
Thank you so much. I’ll try to get info from my doctor on my potassium levels (or ask for a blood test). I’ve just bought a BP monitor and the results are a bit worrying - but I’m working on it. Thanks again - I look forward to learning lots from other members’ posts. It’s good to feel less alone!!
Best wishes
Beverly
and I can smile like the village idiot before reaching for the Gaviscon.
The neighbours, I’m sure, will probably love the lower TV volume! Seriously though, the aids are feeling life changing already.
eater. Looking forward to learning more 
, so wonderful to have you here with us.
