Hello I am a carer, my husband is at Stage 4 CKD. He was diagnosed with 3years ago although his Doctors knew about it for 14 years and did not mention it to him. He was also diagnosed with Kidney cancer and had a successful partial nephrectomy 18 months ago. So far so good and his condition is stable at the moment.
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Hi my name is Pat I had chronic renal failure and they had to remove my right kidney when I was 43. I am 70 now and keep getting water infections. Last year I was rushed to hospital with a blocked kidney and the pain was horrendous. Waited 27hrs for a bed and sepsis got in ! In hospital for 7 nights and I was shocked when the the doctor said “ As you are already in stage 3 kidney failure we have to push these fluids in to fast. Why was I shocked ? My GP did not tell me before hand that I was in stage 3 !! Now drinking water as if it’s going out of fashion lol
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Hiya StevieJ,
I too am on Allopurinol for Gout and also take Finesteride. Not heard of any issues with either. Do you know exactly what they are? Thanks
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John B,
On the list of possible side effects on the Finasteride tablets leaflet is Gynecomastia: male breast lumps. I had one central on my right breast. I wrote online to my surgery at 8am, saw a doctor at 11am and the local breast care unit where I had previously been with my wife, called me to come the same day for an assessment. They diagnosed a benign lump caused by Finasteride, which disappeared quickly after I stopped taking it. Quite worrying. There were three other men in the waiting area not there to support female partners…I was offered a TURP operation to enlarge the hole thru the prostate, it has worked marvellously, I can sleep all night and never need to be searching for the next toilet. As much as 80% of the prostate was removed which made a subsequent biopsy more difficult. The material removed turned out to contain low grade cancer, not previously cancerous. Can’t win sometimes!
Allopurinol leaflet lists harmful to kidneys, or similar wording (bit bizarre this). The same gp wrote to the hospital renal consultant, who had never seen me, seeking approval to prescribe me Allopurinol. A year later (!) he wrote back saying it was okay as long as I had frequent blood tests for CKD every 8/9 weeks. This is listed on my online patient records but I have to rebook an actual date each time.
We’re all different but I hope this helps?
StevieJ.
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Welcome to Kidney Community @Viv100. Great to have you as part of the community.
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And welcome to the online community to all those who joined and posted last night. Great to have quite a few more people joining and introducing themselves. So welcome to you all. I hope you find this a supportive space to meet others sharing similar experiences to your own. Please feel free to take a look at the other categories on the forum to try and find those areas that you have a particular interest in. Good to have you all with us.
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Hi there fellow kidney warriors its good to be here, I had a transpant back 21 and have functional level of 33 right now but it does fluctuate. For anyone who worries about the transplant, dont, they are experts in what they do and make you feel confident. It took a while to get the meds right and alot of side effects from the meds but once they sort your meds out they all go. If i can help anyone and give advice then feel free to ask.
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Hi I am Mary, 86 years old and my eGFR is 34. I am insulin dependant, have Liver disease as well plus high blood pressures. But life is still good, doing a lot of walking (plus coffee stops) and keep taking the pills.
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What a positive attitude you have, Mary. Mind you, I’ve always said that a positive mindset is half the battle!! Keep enjoying those walks. … and the coffee!! x
Maureen
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Hey! I’m Vik, I have not long been diagnosed with what I have been told is a rare one, Fibrilliary glommeronephritis, I really don’t know too much at the mo (but sometimes for me that is better as a semi functional anxious person lol) I have had kidney and bone marrow biopsies. Now waiting to start anti b cell therapy
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Hi - My name is Rob and I donated a kidney to my Step Son around 15 years ago.
Happy to support with answering questions that someone may have in a similar situation.
Or in any way I can.
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Hi I’m Samantha just about to turn 60 years old 
I was diagnosed with CKD stage 3a in January 2025 and my most recent eGFR put me at stage 2 (just). I think this was because I lost 2 stone using mounjaro but I can’t afford it now and unfortunately I’ve put a stone back on so it’ll be interesting to see what my next eGFR is and if the weight loss (or weight loss injection) had any effect.
My ankles have become slightly swollen (left more than right) over the past week or two. Is this happening to anyone else at the same CKD stage?
Thanks everyone 
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Hii everyone!! My name is Abbigail & I’m 24 years old, I was diagnosed with PKD at aged 5 after my youngest sister was born. PKD has affected my grandad who sadly passed away, my Mam, my auntie and now me and my sisters. My Mam has been on dialysis for 2 almost 3 years & is waiting for a transplant. I have recently been trying to fix my diet to slow down the progression of the cysts as they are currently very small!
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Hi Abigail Great attitude. Good luck with the eight loss. Best Wishes B
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Hello My name is George Mac Dougall I turn 73 on the 23 of March. I found out that I have only one working kidney. The left kidney died because of a blockage that was undiagnosed since 2003. Unlike most people I had no pain from a 15 MM KIDNEY STONE. Some say I was lucky because of the pain caused by the stone, unfortunately being left for three years it has totally shut down. The doctor says that removing it is not going to help. I am not concerned as right is working so so. I drop one point in my GFR every month last blood test was in February and sits at 27. My only concern at this time is how much pain is caused by the failure of the kidney and how long until I should have dialysis, Making up my mind on to even start it or just say goodbye.
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Hello George, I am 80 with one kidney since 2018, EGFr 21 and I am not even considering any goodbyes yet. You should look at your hydration and try to drink at least a litre of water a day. A low potassium diet and you may be able to slow the decline in your EGFr. I do not think that dialysis is required until you are down to around 15 which could be a long way in the future.
Best wishs B
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Hello, I’m SandiF and I’m not sure when I was diagnosed with CKD because I wasn’t told at the time! I only found out about 4 years ago when I read it in my notes the first time I looked at them. I was furious that I had never been told as you can imagine and as a result I changed GP and have never looked back, our surgery is amazing! Anyway, I am at Stage 3, the only symptom I have is a very itchy back most of the time so I’m lucky. I’m not on any medication and I haven’t been referred to renal or anything, I just have a blood test every 6 months and urine test. I have been advised to reduce salt and alcohol and drink lots of water (which I struggle with). I have researched dietary guidelines but as I am also Diabetes Type 2 it’s pretty tricky balancing the two! I’m a young 75 and a full-time carer for my husband who had a stroke 18 years ago and was left with left-sided weakness so his left arm/hand is paralysed and his left leg and foot are semi paralysed so I’m kept pretty busy!
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Hello,Sounds like a tough life. Have you been prescribed Empagliflozin as this has a beneficial effect on CKD and Type 2 diabetes. Itchy skin can be helped by Eurax with Crotamiton cream which is over the counter. They both helped me. Best Wishes B
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Hello B
Thank you for those tips, I will look into the Eurax with Crotamiton cream for my itching. I haven’t been prescribed anything at this stage.
Thank you again for your message.
Best regards,
SandiF
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Hi, I am Helen , age 76. I am at stage4/5 CKD and have been attending the local AKC clinic for some years. Things have been stable for a while and am happy about that. I will not be a candidate for a transplant because of numerous abdominal surgeries including a urostomy. As I live on my own in a flat, I have considered having haemodialysis in a centre rather than at home, but it may be that I will opt for conservative care
I am involved with a patient group looking at ways to improve care for patients attending AKC/ low clearance clinics. I do appreciate being part of a community like this.
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