Welcome to the community @Cookey. Thanks for sharing your incredible story of surviving against the odds. Sorry to hear about your recent fall. If you wanted to connect with others currently on dialysis them you might find this category useful to explore and post in. I hope you find this community a supportive and friendly space.
Welcome to Kidney Community @ann.an035. The constant itching you mention sounds really tough. Are there any other people who have some good advice for this? We have an area for diet conversation and advice on the forum that you might want to check out. And we also have some diet advice on our website that might be useful.
Good Morning to you all. I am Beanbag , I am pushing 80 and am a CKD Stage 4 chap. I am still very positive about my life ,which I share with a very loving and supportive wife.I live in Norfolk.
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Hello, I am Alex, a PKD patient. Tolvaptan has been miraculous in slowing my decline, but the condition still presents everyday problems. I hover between stage 3a and 3b at the moment. A recent bout of cancer means I wonāt be allowed a transplant for at least five years. I was diagnosed in my 20s and am now 60.
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Hi, my names Rebecca. My kidneys (and other organs) failed suddenly after I gave birth 15 years ago. Everyone expected them to recover but they didnāt. So I had HD for a couple of years then PD. Lucky enough to get a deceased donor transplant in 2019. It took really well immediately. I got Sepsis 5 months later which knocked my function right back down again so my eGFR is around 50 these days.
I live alone and family/friends just donāt understand the extreme fatigue and other symptoms. Lovely to join a community of people who truly understand. Iām also happy to support others, wherever they are on their kidney journey.
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Hi @AlexG. Great to have you as part of the online community. Thereās been at least a couple of other people who have joined in the last day or two who also have PKD, so you might want to look to connect with them. One easy way to find them would be to use the search function at the top right of your screen to search āPKDā and that should you help you find others who have mentioned it in their posts.
Welcome to Kidney Community @GGIH. I hope, as you say, youāve found a community here who will understand your situation. And great that youāre also looking to support others on here too.
Hi - Iām Pat. Iām 71 years old. Following surgery for an Ileostomy in July 2025, I developed an Acute Kidney Injury. The diagnosis is now Chronic Kidney Disease, Level 3b. Thereās a lot I donāt understand and feel I need more guidance. I look forward to learning coping strategies from others.
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Hi everyone,
Iām a 32 year old female and had a kidney transplant about three years ago. My donor was a family member who gave me a kidney through live donation.
As someone from a South Asian background, I know it can sometimes be harder to find a match on the transplant list, so I feel especially fortunate that my family stepped in.
The journey hasnāt been easy, but we get through it!!
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Hi my name is Sofia, I was diagnosed with Primary membranous nephropathy in 2020, I was very sick by then, Iād been tryingto get doctors attention regarding my kidneys gor 2 years. I want to know about other peopleās experiences, particularly with autoimmune kidney disease
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Hi lynn iam new to nice to meet you how are you iam up its 205 am just thought i would stop by
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Hello everyone. First up, Iām really a fraud - I donāt have kidney disease, my late wife did. She was diagnosed in 2016 and went on to PD in 2018. She also had lymphoedema which increasingly limited her mobility; in 2020 she became housebound and eventually ābedroom bound.ā I took early retirement in 2019 partly to be able to help, and I basically became her carer. Initially she was on CAPD and in 2023 went on to APD; she had several spells in hospital (St Jamesās, Leeds). Initially assisting with the APD machine, eventually I was doing all the set ups. In February 2024 she was diagnosed with calciphylaxis, and died in September 2024.
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Hello Raven, I am 80 and stage 4. Itching has been a nightmare, on both legs and both arms, sometimes on my feet. I have found that Eurax cream with Crotamiton brings tremendous relief and one application lasts a couple of days, and best of all it is under Ā£10. Worth a try.
Good Luck best wishes B
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Hi ,my name is Charles. Thanks for letting me join the community. I am at stage 3 . I have been told I have 3 years to dialysis unless I get my blood pressure and diet under control. I have been eating more fibre and fruit and Dromore water wh6is helping I think . But really Iām not sure as thereās no real sign of losing weight. Any tips would be great
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Hi Iām 64. I was diagnosed with systemic lupus erythematosis at the age of 15. I had kidney disease diagnosed at around 19 but my progression has been slow. I am now stage 4/5 and on the deceased donor list with an egfr of around 10 to 12. I managed quite well on this but I dont have much exercise tolerance at the moment due to a combination of OA in my knees and renal anaemia. Overall I consider myself quite lucky to have got to this age without needing dialysis.
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Hi, Beanbag,
Ah, a fellow itcher! I do have Eurax cream. Not sure if it has crotamiton (it is upstairs by my bed, will check later). It is quite old, as I am one of the unfortunates who breaks out in chicken pox when they are stressed. If it doesnāt contain crotmiton I will invest in a new tube.
My kidney itch has been going on ever since I had a nephrectomy nine weeks ago. How long has yours been going on for? Will it ever end??
Cheers!
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Welcome to Kidney Community @PatC. I hope others on this forum can offer some useful support and advice. You might want to pay particular attention to the living with acute kidney injury area. We also have some health information resources that you might find useful here.
Welcome to our new online community @S26. Great to have you with us.
Welcome @Sofiacan. I hope you find it useful and supportive hearing about other peopleās experiences. To help find those in a similar situation to yourself, you might want to consider starting a new topic for those with autoimmune kidney disease under the āliving with kidney diseaseā category.
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Welcome to the community @JonTanner. Firstly, certainly not a fraud at all joining the community. Kidney Community is just as much for carers and family members as it is for those who have kidney disease themselves. Very sorry to hear about your wife. You might find it useful to connect with others who might have had similar experiences in the carers, family and friends category. I hope you find a supportive community here.
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