Chronic Kidney Disease - I'm only 35

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I've recently been undergoing some investigation for poor kidney function. I had an ultrasound scan on Tuesday. My GP called yesterday to say that the scan has identified chronic kidney disease, and has referred me to a urologist. I've just had a baby 5 months ago and have a 7 year old son. I'm terrified I won't see them grow up. Does anyone have any experience of CKD at a younger age they can share to help me feel more positive?

Not at a young age but Dh has had this for the last 7 years (he was 49 at diagnosis. I have a little knowledge.

Try not to panic. For a start ckd can mean a lot of different things to different people depending on your levels of function. Your urologist will be able to tell you what it means for you, or likely to mean. Be prepared for a lot of information. While the kidneys don't tend to improve function, there is excellent therapy and treatment for it. Dh is well at the moment even though his levels are very low.

I know of people who have enough function to live normal lives that only involve regular monitoring.

Good luck with your appointment.

A family member has had this since he was 29. He's now over 70. Has had a lot of ups and downs including two transplants, one of which lasted 25 years. It's been no picnic but he is very active and so are his adult children. He's had great treatment. Everyone's different , but don't despair.

Thank you this has given me some reassurance, it was shocking to hear over the phone and I'm not sure when I'm seeing my urologist. I don't know what stage I'm at currently, I think my egfr is around the 45 mark, plus protein urea and elevated creatinine levels. It's all a bit of a blur. I'm just trying to carry on as normal like nothing is happening at the moment. I feel ok, a bit fatigued, but otherwise alright. Fingers crossed 🤞🏼

I have CKD, diagnosed in my early twenties. I’m now late forties and it’s starting to deteriorate quickly now and I’ll need dialysis/transplant in the next year or so.

I’m naturally upset but feel I’ve done ok to get this far with no real issues apart from kidney/urine infections (which I imagine most people get from time to time)

Good luck. Do you have a diagnosis yet?

Hi @HairyPotter - sorry to hear you are going through this also, but pleased you have been doing well. The only diagnosis I have is what my doctor (GP) has said over the phone yesterday about the ultrasound results. I am yet to see a urologist. The scariest thing for me is that apparently my kidney function has been poor since 2010 (!!!) but nobody thought to mention it to me until I was just about to have my ds in April and my bp went through the roof.

OP - I'm going to PM you.

Mine has rumbled away for over 25 years with no real problems so try not to worry too much until you know what you’re dealing with.

My condition, IGA nephropathy, has a 20% chance of complete kidney failure so good odds. I’m a bit miffed that I’m in that 20% but can’t moan as I’ve been fine up to now.

I’ve had CKD for 10 yrs. not progressing and a nephrologist told me the tests weren’t totally accurate and go away and not worry. So I mostly don’t

Thank you everyone, I really do appreciate the kind words of reassurance and support. I have only told my husband and SIL in real life, because I don't know what I'm dealing with yet. I might use this thread as a bit of a diary to look back on. Will update when I find out any more.

Thanks again everyone, and best wishes to everyone going through the same.