I was reading through information on my NHS app to see I had been diagnosed in 2022 with CKD stage 3a
No -one had ever discussed this with me so I was shocked. Although websites like these were helpful I was also apprehensive.
I managed to get a GP appt pretty quickly where they told me my levels had been consistent over the time and not to be alarmed.
They are monitoring my urine, blood and blood pressure regularly. They said my last results in May were very positive.
Thanks to this and other websites I’ve read up on foods to avoid, eat in moderation etc which has posed very useful. I am reading ingredients more and being sensible.
My left kidneys have stopped working and it got to be removed this is my first time being on here and I’m very afraid when I had my daughter i had to have surgery they said I had cancer now I got to removed my left kidneys and he thinks I might have cancer with no help and no one to him help me I’m 72 years older
Hey there so when I was born with an egfr of 33 that just slowly declined throughout my childhood. I can’t remember enough about what numbers were at what point but o can say I didn’t go onto full time dialysis until I was 19 years old
Got diagnosed a couple months ago with IgA and had an egfr of 70 and it has slowly decreased over the months to where im at 57 now. I know thats technically still okay but im freaking out and dont know what to do as im on so many medications to try to help the symptoms but even though my blood pressure has reduced significantly, i’m going to the gym 5 times a week and ive completely changed by diet, the egfr is still decreasing. Im 23 and so scared!
Hi, please, take a breath, and try to focus on now.
You’re young and healthy, but I totally understand the feelings you are going through, as I have IgA nephropathy too and it’s frustrating being unable to really do anything about it, beyond the medication.
The key is to eat well, the food list can be a minefield btw, it’s not just all fruit and veg, and focus on keeping your body as healthy around your kidneys as you can.
Don’t overdo things, but at the moment it sounds like your eGFR remains stable enough and there are new meds coming like budesonide igan, which is focused on IgA symptoms which I hope to be on after I get a transplant in a few years.
Where I am now, I walk a lot and exercise, but I can find myself exhausted if I push too much and it can take a few days to recover.
Focus on things that work for you mentally, it’s tough but manageable and things can be put in place to help you.
Im at stage 3 about 30% function now. With steady decline.
I found out by chance when I moved GP in my late 20s. It took another 15 years and two biopsies and genetic testing to be diagonsed with FSGS Alport syndrome.
The nhs in my area while good for care arent able to support mental health well. We had one counsellor for the whole of Essex. They left two years ago. As far as I am aware no one else has taken the role.
Im glad I have found this forum as diagnosis and living with CKD is daunting
I was diagnosed with Stage 3b in January 25. Since January 26 there has been a steady decline I am now Stage 4 egfr 20. A biopsy was scheduled but did not go ahead because apparently they could not get a clear picture of my kidneys. I don’t know the cause of the kidney disease and don’t feel as if the doctors care about the cause. I’m trying to hold down a job and look after my family and feel there is little support. The Renal Team all seem very pleasant when I ever do get to see them but appointments are few. I sometimes feel as if I’m just being monitored whilst I slowly die.
You are absolutely right. The recent cancelled biopsy and being no closer to finding out the cause and in turn a treatment has been a blow. In the doldrums at the moment but will pick myself up again. I don’t know anybody who has kidney disease so it’s good to find a forum of people who understand.
If it helps, depending on what’s causing yours, my eGFR was 24 in July 2024, dropped to 16 by Oct 25 and then 13 in June 26.
It’s now stayed at 13 since, so things do fluctuate.
I was expecting to be on dialysis by now, following the results on October, although at that time a transplant was still on the cards, until I was diagnosed with cancer in June this year, as that was found during the tests to move onto the transplant list which started in January
So I fully understand the ups and downs mentally this puts us through.
As I see it now, I can be thankful I was ill enough to go on the transplant list, otherwise the cancer wouldn’t have been found / tested for, and who knows what would have happened if it was left untreated for another 6 months or year.
I also don’t know anyone else personally who has CKD or any form of kidney disease, so this site is a help to discuss things.
It also pays to gain some knowledge of what lies ahead, but I’d say only use NHS or the few UK kidney charity sites for info, don’t start googling …
Kidney research and kidney care uk both offer great free online and paper resource sheets and leaflets that you can obtain and get for your workplace if needed too
Afternoon all, I was diagnosed last year through bloods after being really poorly with fatigue. I was told by the GP that its nothing to worry about and just continue as you are. I was not provided with any other information. Me being curious started doing research and I was shocked to what I found. I was told I have stage 3B and I suffer from high blood pressure. I have since requested to be referred to a specialist which the dr completed and I have had my first appointment which was bloods and a physical examination with a further appointment in Dec. I still don’t know why I have CKD.
Hi sorry I’ve not been on here for a while but I’ve been dealing with some health issues I wasn’t expecting.firstly I would like to say hello to everyone I’ve already spoke to and welcome to all those new members I’ve missed lately. I’ve been a member of the ckd gang for 16 years and over the years I’ve had numerous operations on my kidneys but the ladt 6 years I’ve been very blessed and have been very stable at stage 3b to 4.lasr month I had a kidney infection but the antibiotics didn’t seem to be working so ended up in a &e after a ct scan they have found another 2 kidney stones to keep the 2 I’ve already got in my right kidney company but the issue is 1 stone which is very big has lodged itself in my tube which is causing issues as that tube has already been operated on before. The pain comes and goes and as everyone knows it’s excruciating when it does come..therefore I’m having to have an operation tomorrow. But because of all my previous surgeries it could take up to 3 operations to fix. I’m trying ti stay positive as ive been very blessed to have had 6 stable years but although you know it can happen it still came as a shock. Sometimes trying to stay positive everyday is hard when your in pain and face bit of uncertainty and I’ve told myself it’s OK NotTo be OK but I’m very lucky to have 2 amazing daughters who have been on this rollercoaster journey with me since they were 11 and 14 and are so supportive and will be with me every step of the way.ive got beautiful pictures from my gorgeous grandkids who are only 2 and 4 s9 they don’t understand and shouldn’t have to so they know nannas got an ouchie and needs bit of fixing. So as we do every day just another hurdle to climb so as soon as I’m able ill be back and I want to say thank you to all of you for the laughs we have and the support you give on those not so good times as only you guys know what we deal with and go through everyday
