Hello, I’m Tom I’m 75, I live near York. I was informed I had CKD by letter from my GP following a review of blood tests in July 2025. I have looked into suitable diets but find it a bit confusing to know what I shouldn’t eat. I am thinking of a consultation with a dietitian, NHS or private, anyone tried this and has any advice.
Hello Helen, I understand your feelings. I amalso considering the conservative care option. The dialysis route does seem a bit of a faf , so nearer the time anything is on the table. Your patient care group is a good way to put something back. Best wishes B
Hello Tom I fully understand the confusion . I found the CKD diets information often contradictory. I changed my diet to exclude high potassium foods like bananas, tomatoes and nuts.I have reduced my intake of dairy products and root vegetables.Make sure that you keep hydrated drinking a least a litre of water per day. This can be done using cordial , but not the high juice varieties. You wiil find a lot of information on line, and I have chosen to follow the various NHS hospital suggestions, Hope this helps, Best wishes B
Hi Beanbag.
Thanks for your email and your advice. I find diet advice a bit confusing. I asked a GP and she checked my blood results and said l was okay to eat bananas. I mainly drink fruit teas or similar with minimum decaff tea and coffee.
Hi lindy I’m aura and I have stage 3b to 4 .having no treatment for a year is really good but that doesn’t mean you should ignore your own health. Keeping as active as possible is really good and also drinl8ng as much water as possible to keep hydrated. Avoiding too much salt and foods that contain potassium in m8deration such ad bananas tomatoes beetroot will also help slow the progression of the ckd.other symptoms to look out for is hight blood pressure so get it checked regularly. Pain in lower back also muscle cramps and pain in the lower legs.itchy dry skin is also another symptoms to look out for.these all sound scary but can be treated and everyone is different so I hope you never have to experience any of these but if you do seek help from your GP.hope this helps and any questions message and I’ll try and help bye for now aura x
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Hello, I am trying to find out as much information as possible regarding kidney transplant . My partner was diagnosed June 2022 with Good pasturer syndrome, an autoimmune disease. After spending 6 weeks in hospital to discover what had caused the kidney to fail that was the diagnosis. He had, had Covid quite bad beforehand, which according to the first consultant he seen seemed to think that was the cause of the failure. He now has no kidney function, and relies on dialysis 3 times a week. He has had a rough ride with meds making him very sick. Pneumonia several times, he also has a terrible shake in his right hand which according to one specialist could be connected. We have been called over to Liverpool Royal hospital 3 times for a possible transplant, only for the kidney not be not suitable at the last minute, which had not been easy for him or us as a family. We do not have a large families in order to have a possible living doner Our daughter has young children and may wish to have another child, our son went through chemotherapy as a child, I have been tested but I am not a match. My only brother is a very heavy smoker so really not suitable, that leaves my husbands sister. He had now been on the list for 3.1/2 years. I think he is coping better now, we seem to have got used to this way of life. We had both just retired and due to travel and take it easy, but hey others have so much more to deal with. The up side is I have been able to spend a lot of time with our two adorable grandchildren, a bonus indeed! Good luck to you all on this journey, one which we never new existed, until we were part of it.
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Hi natalie your not alone I’m stage 3b but early stage 4.the weeing through the night is si frustrating I go at least 5 times a night.ive had itchy skin but was spread out now it’s a daily occurrence do you take anything for it or do anything other than scratch !!!
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Hi all, I’m Chris, (56) I found out I was at stage 5 kidney failure by accident. I was in hospital for a hip replacement and the anaesthetist stopped the operation asking “what’s wrong with your kidneys” and rest is as they say history. I’ve now been on dialysis for a year. I was told about this community by a good friend who I meet at a Kidney information afternoon.
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Hello Chris. That is one heck of a story. I cannot imagine the shock happening of going from OK to Stage 5 in the blink of an eye. Although I guess this was deteriorating but just unobserved. Good luck with your dialysis. Best wishes B
Good morning. My name is Sandra and I’m 79. My transplant was on New Year’s Eve 2014 .Lots of bumps in the road - a reminder that a transplant is a treatment not a cure but a wonderful treatment, all the same. Always slightly on edge that it might fail and I ll have to go back to dialysis…
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Hi I’m Christine. I have recently with stage 4. It was a real shock. I’m feeling confused by everything and don’t know where to start.
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I’m sure you’ll find some information under the topic heading that you’ll find useful, Christine. If you have any questions there will be someone who can answer it for you.
Maureen
Hello I have been stage 4 now for a few years. Anything you want to ask, please go ahead and I will try my best. Best wishes B
Thank you for replying. When the doctor told me I couldn’t take it in. It’s only since its sunk in I’ve started to panic.
Do you need to follow a special diet? I’ve started to be aware of everything I’m eating.
Hello Christine. The things to avoid are high potassium foods, excessive salt intake and dehydration. There are CKD diets on the web, especially those posted by the NHS hospitals Primarily avoid Bananas, tomatoes, beetroot , nuts and whole grain foods and keep yourself well hydrated to the extent of 1-1 1/2 litres of water each day.Water can be flavoured with squash, but avoid concentrated or Hi-juice squashes. My wife checks out all new food for me as potassium levels are not often shown. Try to keep an eye on your blood pressure and avoid it getting too high. I use am Omron kit that was recommended by my nephrologist and you can get on Amazon for around £30. If you are diabetic , as I am , it is a whole new ball game. My diabetes is diet controlled, ie I do not tahe any medication, but in order to keep my potassium level under control I have to break some of the diabetes rules. I eat white bread in moderation not brown , the same with pasta and rice. I am told that diabetes , or a high glucose reading, can be controlled by medication much easier than can a high potassium level. Are you being seen by a nephrologist or kidney consultant at your local hospital/ and currently what is your EGFr level? Best wishes B
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Wow thank you for all that information. I’m not seeing anyone at the moment. I d got a scan tomorrow so will see my GP again and see what she says. I haven’t got high blood pressure at all. I’m not diabetic either.
It’s strange but last year I sudden!y became intolerant to chocolate, milky drinks even I’ve cream. Bananas seemed to flog my throat. Perhaps it was the high potassium?
I will post again when I know more. Thank you once again you have made me feel much better.
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Glad to help. Keep in touch Best wishes B
Hi Everyone, I’m a Newby lol.
I’m the dad of 3. But it’s my sole son that brought me here. Here’s 40yrs old. Born with VARTERS. Which involves CKD amongst a host of other bits.
He was a Great Ormond St kid from day one. And spent 16years attending GOSH. Had his first two transplants there. And another 20odd operation for other stuff. 3rd transplant was at Addenbrooks.
Now (today) he’s just been told he’s going back on dialysis. Not a happy 40yr old. Mainly because they have no twilight slots. Plus he claims the staff don’t understand how he can hold his job down? If he’s on days. A job he’s lucky to have with a company that value him and more than tolerate his sickness.
This will hopefully be his 4th transplant.
He is My Hero. I’ve never met anyone with such guts and spirit. Determination that is truly outstanding. A “character” that has won him awards. Such as BKP young hero. I have learnt so much on this journey. About renal function, about life, about people. Shared good times and bad with fellow parents. And plenty of tears.
He puts us mere mortals to shame LOL.
Thanks for reading.
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I can tell you’re incredibly proud of him. Fingers crossed that all goes well!
Maureen
Hi my name is James,this time I have been on dialysis for two years before I was on home hemodialysis untill I got a transplant in 1999 which lasted me 25 years I’m now at home again doing hemodialysis on a very different machine that I had 27 years ago.Im 58 years old and doing fine not on transplant list yet but hope to be soon.
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