I am new to this group and am looking forward to learning about the experience of others and how that might relate to my particular circumstances.
I was diagnosed with an overlarge prostate which caused urine retention and therefore kidney damage. At the point of diagnosis my eGFR was 24.
In the two years since prostate surgery my eGFR has risen to 52 but has now plateaued; it has remained at that number for 6 months.
I am not on any medication and have not taken any supplements. Post-surgery I have not had any medical support or consultation (so feeling a bit isolated!)
I am hoping to learn from anyone else in a similar situation and particularly want to understand if the damage to my kidneys will get any better or whether the natural healing has gone as far as it can.
And finally whether the measure of my kidneys health at eGFR 52 is likely to be stable or whether it might deteriorate over time.
I am hoping that someone out there will empathise and help me to understand further!
Welcome to the forum, @Jack. Iām pretty sure that at least some of your questions can be answered by some of our members! Itās good to hear that youāre stable just now though.
Hi @Jack! Thank you so much for joining Kidney Community
I am so sorry to hear about what seems like such a rollercoaster. I do hope you can find someone here to learn about their experience. My top tip would be to use the search bar on the home page. There are many posts with people mentioning their eGFRās so it might be useful to have a read through them and engage.
Totally understandable to feel a bit isolated post-surgery but know that all of us here at Kidney Community are here for you.
I forgot to add that I once had a fear of needles which I was lucky to overcome as I just got used to it when I had to have bloods done a lot when I was pregnant. The fear is real though and I had to always lie downā¦ blood pressure was always through the roof as a result , but I could also feel a bit faint- the fear of fainting was worse for me and still is.
I think having a fear of needles is quite common.. just talking about it can make my husband queezy which can be difficult sometimes since I am only 5ft 2in and heās 6ft 2in ā¦ picture me trying to get him to the couch then raising his legs to try and stop him passing out!
Since starting dialysis I use Elma numbing cream. I get it free on prescription but have also bought some from the pharmacy. It definitely helps me and most times I do not even feel the canulas going in. Maybe you could try using the numbing cream whenever needles are involved.
Hello Everyone. Following my last routine annual blood test I have been diagnosed with CKD stage 3a. I was shocked as I feel fine and, apart from a knee replacement about six months ago, I have had no health problems. At 83 years old I thought I was doing well, my blood pressure is good with the aid of medication which I have taken for about twelve years. I also take a low dose statin.
I have always tried to follow a healthy diet and thought I would be able to continue with this to help with CKD. I am therefore shocked to read that most of the things I have been eating because I thought they were good for me now appear to be bad for my kidneys. So, no more bananas, tomatoes, dark green veg, milk, eggs, wholemeal bread etc. what on earth am I going to eat? I donāt eat a lot of meat but do like veggies and fruit. I havenāt eaten white bread for years and have lost the taste for it but I expect I can get used to it again, especially homemade.
Hi Iām aura and have ckd stage 3b to 4 so a little further on than you and a little older at 56 but I was diagnos3d at 40 also.im glad you are stable using diet alone unfortunately mine was caused by recurring utiās and kidney infections which caused multiple large kidney stones.if you have any questions Iāll try and help if not theirs lots of other people who xan help if I canāt welcome to the gang x
Thanks for your kind message. I am sorry to hear about the utiās and kidney stones. I hope you are able to treat the uti and get the kidney stones removed.
Iām glad thereās a community Iāve never known anyone with CKD. Iām trying to stay positive and do whatās on my had although my eGFR levels keep decreasing Iām still lucky to be on a moderate stage.
Iām Jen, 58 years old. Diagnosed with CKD in 1999 following AKI in 1998, late stages of pregnancy. Turns out I had just 1 functioning kidney, the other was apparently squashed when I was in the womb so didnāt grow! Fast forward to today, Iām now stage 4/5 eGFR 15. Hoping my bmi is low enough to be put forward for transplant , really donāt fancy dialysis, though preferable to meeting the grim reaper! Iāve been granted ill health retirement from police, effective from 8th April this year as working shifts even at an average of 26 hours per week was too much.
Hi Jen. Sorry to hear about your condition. and welcome to retirement. I retired in 1996 and never really looked back because the job was becoming more time consuming and stressful . What are the BMI requirements for a transplant ? and will you have any option regarding dialysis with your EGFr whilst waiting for a transplant. I never really liked the idea of dialysis either, but being too old for a transplant , (80), it is that or the box for me I suspect. The reports on here about dialysis have changed my mind and I am now more in favourof it. Perhaps as the choice has become nearer it has also focused my mind. Hope you are successful in your transplant . Will keep my fingers crossed for you. Best wishes B
Hi Iām Debbie and Iām 64. I found out through a chance comment from a locum GP that I have Stage 3a CKD. Upon investigating my NHS App I had already had it for at least 10 years and had never been told! In fact I had been prescribed Naproxen on several occasions
I panicked initially but after researching and realising that Iād been stable Iāve calmed down!
Luckily we follow a good diet anyway and I donāt use salt or drink Coke or use alcohol, and I exercise regularly having a horse. Hoping to remain stable for many years to come
Thank you for your reply. Iāve known for a while that a transplant was my consultantās preferred choice and I think my feelings on dialysis stem from the knowledge that by the time I need it, Iāll be feeling pretty dreadful! BMI has to be 34 and under & at just 4 foot 11 inches I need to shift some weight! I have been prescribed Wegovy through my GP and 5 months in I have lost 2.5 stone. I then had to stop taking it as I was getting severe breathlessness and vomiting! I am back on it now at the lowest dose, ( I didnāt gain any weight in the 4 weeks I was Wegovy free), and being carefully monitored. I am just about at BMI 34 so Iām hoping my consultant will put me forward for transplant work up.
Retiring had been weird, I felt very guilty, am I ill enough etc. I have worked non stop since I was 17, apart from 6 months maternity leave & having been a shift worker for the last 24 years, my work colleagues are also my social life! I almost felt I needed to grieve the loss of work! On the plus side, whilst I still get fatigued, I am not permanently exhausted anymore and therefore have been cold/virus etc free since December. Iāve got the energy to explore hobbies and enjoy cooking again. Iāve started to look at local volunteering opportunities ( there are loads!) so that post 8th April I can hopefully keep myself occupied and find some new friends.
Do you know what caused your CKD and what is your function? Iād love to hear about your experiences of CKD and also your retirement
Hello Jen. About 10 years ago I had a operation to fuse the joints in my big toes due to arthritis. This meant staying off my feet for about 12 weeks. After this period , during which I had gained a few pounds, I felt very bloated and had difficulty shifting the extra weight. My GP thought that I had water retention and prescribed suitable tablets. These did not work , so she sent me for a scan. The scan found a 8 cm tumour on my left Kidney . the kidney was removed. It turned out to be non malignant, but it had gone by then. The strain on my remaining kidney seems, according to my GP, to have led to the general decline in itās function. My EGFr war around 30 in 2018 down to 25 in 29in 2023, subsequently reducing from 25 in 12/25 to 21 now.The last year has brought about the arrival of itchy skin , rashes, headaches , feeling āwobblyā and a very rapid deterioration in my eyesight. I now need a new glasses prescription every 6 months. Generally other than the above I feel fine and still work at my carpentry and send a lot of time in a quite big garden. Retirement came about when my previous wife suddenly died. I was a mining consultant in the non-ferrous metals industry that involved a lot of travelling around the world. I frankly gave up. When I got married again 23 years ago, life took a decidedly upward turn and apart from this damned kidney, is still upward. Well that is something I have not told in a long time. You asked for my story and look what you got. Best wishes B
Good morning everyone, my name is Maureen. Since October 2025 my liver and kidneys have been a bit naughty and the Doctor said my kidneys were failing. Iām diabetic type 2 with other conditions which are spinal stenosis, osteoporosis and osteoarthritis. I keep getting backache and I put it down to my spine Iām now wondering if itās my kidneys. I have been referred to Renal but have to wait till 21st April, this was an urgent referral. Thank you for letting me join this group.
Hello Maureen, Nice to see you on here. My Nephrologist has me on Empagliflozin which is beneficial to both CKD and Type 2 Diabetes. Might be worthwhile mentioning this. Yes, an urgent appointment ? was is non urgent ? Best wishes B
Good morning Beanbag, thank you so much for the very important information. Iām making a list of questions so Iāve added this to it. Iām 76 and everything has got on top of me as Iāve also got an ulcer on the heal which has made it harder to walk but itās getting better and summers round the corner!!! Yes urgent referral but the NHS is so stretched thatās the earliest appointment available but at least I have one. Thank you. Maureen
hi im brian and have stage3 ckd and have had this problem nearly5yrs, its a problem i try to stay on top with it but some nights i have to take upto 4 tramadol each night to ease my pain but some nights i only need two bud have taken more sometimes, how do others cope with the pain and discomfort
My name is George. I am 82 and have stage 5 kidney desise, as the are only operating ay 9%. I am currently awaiting dialysis. My main worry is - how sessions of dialysis is going to effect my daily life style? I volunteer for a dementure charity on a Mondsy and Wednesday and dont want ot to effect my work, as I love what i do thete and have many goŹ»d friends.
I am new to all this. In January I was suddenly diagnosed with a large Kidney tumour. My kidney was removed a week later. I am stage three cancer and needing 6 monthly CT.So now I am learning to live with only 1 kidney,.
, really donāt fancy dialysis, though preferable to meeting the grim reaper! Iāve been granted ill health retirement from police, effective from 8th April this year as working shifts even at an average of 26 hours per week was too much.
