On this thread share with others what stage you were diagnosed at. When you were told about your kidney disease, what did you know and how did you find the information and support you needed at the time? What do you know now that you wish you had known sooner? Share your experiences that might help someone else on their journey.
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I was diagnosed with stage 3 last year but only saw it on the nhs app, no information given to me by gp.
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I âcrash landedâ into diagnosis in Sept 2018
Mine was an incidental finding and was rushed to emergency care as egFr was 15 creatine over 1000 within 3 month on dialysis and on transplant list.
Diagnosis stage 5 no indication, biopsy confirmed IgA nephropathy.
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Hello everyone,
My name is Nicky I have had kidney disease since I fell pregnant for my son he is now 32, when I was pregnant for him on a 20 week scan I was told I had cysts on both kidneys and would be referred to a kidney specialist.
2 years later fell pregnant for my middle son who is now 30, was told then my cysts had grown so I asked why have I not seen a specialist I got no response.
Since then my daughter who is now 27, and still havenât seen a specialist asked my own doctor what was going on and why I had not been referred. It wasnât until 6 years ago that I finally met with a Consultant and was then told my cysts on both kidneys had spread to my Liver and now that is covered and they canât drain any of the cysts.
I was shocked to say the least. When I saw my scans it was horrific I cried and then was told that my children could have this disease and that they had to go for tests when they where 21 years old, so they all went for tests and yes both boys have got it and they have regular tests and scans to make sure thereâs are not spreading.
Now Iâm stage 4 and will end up dialysis as not having a transplant assessment as I donât want it.
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Do you mind me asking why you do not want a transplant?
Hi Tinokay,
Of course I donât mind you asking me about the transplant choice.
- Epilepsy
- Brain Damage
- Complications during operations
My survival during surgery is very low hence choice of not having transplant.
I hope this helps.
Thank you for asking.
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I have been diagnosed with stage 2
I was diagnosed at 3 weeks old, at that time my egfr was 33 and I had one single small Kidney
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Diagnosed with Ckd following an operation to remove my left kidney in 2018. A tumour was found during a routine medical check. The tumour was non malignant but my problems started there. EGFr has fallen from 24 to 21 in the last few months.My hospital nephrologist is very good, but my GP is not supportive in any way ,with no advice or comment ,just âabnormal but expectedâ being the only comment I get.
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Hi Denise,
Iâm stage 4 itâs a nightmare when you find out you have this disease. Have good days and bad days.
I suffer with a lot of pain. Some people do and some people donât. We are all in the same boat on this group. We are here to support each other.
Love Nicky x
Ok ism sorry you have reached stage 4
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Gosh what a shock. 
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I accidentally found out I had CKD in 2017 aged 26 when I started eating healthier. I still find it difficult to get my head around it 
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I had a very similar experience, I only found out about my disease on a referral form, no discussion or any kind of follow up from my gp other than a request for routine bloods and urine test
At least I had a phone call but nothing else
You are not alone there. My GP was most unhelpful . Luckily I have a very proactive Nephrology department at my hospital . Best Wishes B
I was diagnosed purely by chance. I was feeling a bit tired, so my GP wanted to check for anaemia. The blood test came back showing my GFR was borderline stage 2/3a; so Iâd had undiagnosed CKD for a while. I wasnât in an at-risk group (other than raised BP). Had I been diagnosed earlier, my kidney âjourneyâ may well have been different. I think that screening and testing of at-risk groups needs to be much better.
Hi my name is aura Iâm 56 and was diagnosed when I was 40yrs old. I didnât know I had ckd but one day I woke up and was bleeding loads when urinating and was in the worst pain of my life when reaching the hospital and ct scanned they found a 10cm renal stagnorn(massive kidney stone) I had to have 3 operations to remove it but I still have some fragments left but could do more damage if removed. Iâve had 30 operations on my k7dneys trying to save them Iâm now at stage 4 with secondary hyperparathyroudism as well. I try to stay positive as m6ch as I can as they told me my kidneys will fail at some point so I try and enjoy my life with family and deal with problems as they arise.
Hi, i was diagnosed at stage 3 13 years ago following a medical at work which showed very high blood pressure.
Over the next 9 years I steadily declined to stage 5 and started dialysis in 2021. On 16th November 2023 i had a transplant and thankfully, so far, everything has gone well. My one kidney has an EGFR of 64 %
Hi Iâm Laura and I crashed into dialysis in August 2024 aged 37. I had a blood test as I felt tired all the time. 111 then called me in the middle of the night to advise I needed to go to hospital as my egfr was 4.
I started training for home hemo dialysis in October 2024 and came home from training in December 2024 and have been on dialysis since. Was finally activated on the transplant list in May 2025 and continue to go on dialysis at home four times a week. Itâs a lot and as people have said, you have good days and bad days, but itâs important to remember that dialysis is allowing you to live your life, it is not your whole life (although it does feel like it at times) 
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