CKD/Kidney disease. What will life look like?

[InterviewGhost]

Currently undergoing tests due to issues with chronic UTIs which regularly progress to my kidneys, and, localised kidney pain. Protein and blood in MSUs consistently, etc.

I’m awaiting a USS (next week) and from there I’ll know what’s what.

Ive never even thought of kidney disease or kidney damage and don’t know where this has come from. I don’t drink, I don’t do drugs, but I’ve had a lot of stress and likely unmonitored high BP for years.

I’m 40, not overweight, active, good diet.

For those of you who have experience; what does living with kidney damage or kidney disease look like?

I have CKD 3a and life is totally utterly normal, apart from blood tests twice a year and a low dose blood pressure med.

I drink lots of water, and no alcohol, but that's nothing to do with the CKD. I don't modify my diet.
Mine's autoimmune condition related and has been pretty stable for the past 8 years.

I suppose it will depend on what stage you are. I found out I had CKD stage 3b a few years ago and I was completely unaware. I don’t notice any symptoms in my everyday life at all. I have my bloods etc checked twice a year and that’s it. I haven’t received any “life style” advice from my GP. I’m just carrying on.

Thanks both - that’s helpful. Two years ago my kidneys were totally normal so that’s…something? Though I don’t know how fast it progresses. I am glad it’s not the death sentence (sorry) I thought it would be.

I used to be 3b, but have got up to 3a. It's not always one way. Try not to worry.

Oh, I never take ibuprofen or other NSAIDs.

I am on certain medications which I’ll need to come off, actually. I didn’t think of that.

your experience has been helpful and I feel somewhat calmer: thank you!

I recognise some names on here!

Hiya - I'm just here to offer you some reassurance from the other side of the coin!

I'm nearly four years out from a live donor kidney transplant, and life is completely normal, and I'm well. You'd never know if you met me.

I got all the way down to 12% kidney function thanks to an autoimmune condition, and I can honestly say symptoms didn't really affect my life until I was at the 25% mark.

Renal teams really look after their patients, as we're normally with them long term. It's a scary path to be at the start of, but you'll learn more as you go.

Loads and loads of people with kidney issues stay stable and never need treatment to the extent I did. I'm no Doctor, but it sounds like yours has a very identifiable cause, so hopefully you can get that sorted soon.

If you ever want more support, we have a fab 'Crappy Kidneys' thread here on Mumsnet.

Wishing you all the best. x

And yes, avoid ibruprofen forever!!

I used to be on the "crappy kidneys" threads, but felt a bit of an imposter, as my kidneys aren't crappy enough!

haha - fair enough! It is a fab place if you ever need a bit of support though OP. No one there will claim to be a Dr and offer advice on medical issues (that's what those highly trained renal consultants are for!) but there's a lot of people at all different stages who will offer moral support and lived experience.

I remember being told quite early on in my journey, that of all the organs to go wonky, wonky kidneys are your best bet. They keep going until the bitter end, and they can always whip one out of someone else, and whack it in to you! Actual words from a Doctor!

It'll be ok. x

Out of the blue I received a text from the surgery to tell me I had CKD stage 3! Now that's what I call good communication!
Nothing has happened or been suggested. Life has just continued as normal.