Kidney Patient Guide

Hello everyone. I'm new to posting on this forum but have been following many of your own stories for some in an attempt to make some sense of my own. I'm a 39 year old mother of two young boys and was diagnosed with IGA last spring after some fairly rapid kidney function decline over the previous year or so. When I was first attending the renal clinic two year ago I had approximately 50% function. This stabilised for a short while somewhere between 25-30 for the past 6 months or so but has recently started to decline again and my results are hovering around 21%. In general I feel fine and often forget this is there. I work full-time, exercise regularly, enjoy life with my husband and boys as though normal. But after secretly wishing for a few months that things were going to be ok - for at least a while, it seems my body has other plans and there's nothing I can do to stop the inevitable. I'm not sure what hoped to get from posting this today but I guess it helps knowing that there are so many others feeling the same things.

Hello Strega2,

I am sorry to read about your health.

Feeling low is all part of the condition so don't think you are being a baby or whatever. If you feel like a good cry then have one, best done alone I think, and just the one.

Once that is over, I think the best line of action is to quietly start to learn about the condition and probable treatments (your consultant and team will answer any questions you turn up). Why? quietly, because you don't want to upset the family, and better the devil you know.....

Best wishes.

Hi Strega

Sorry you're feeling down. We've all been there. Becoming a renal patient is a major life change and a big shock.

The good news is that life is still worth living, you will carry on enjoying many of the same things, especially your boys. Many people find the thought of dialysis worse than actually getting on with it when the time comes.

You're doing all the right things by staying active and getting on with life - being fit and a healthy weight when you go onto treatment will help a lot. When you feel ready to start researching, there's loads of information online and of course a great resource on here.

Wishing you all the very best
Amanda

Thank you for your kind replies. I really am so grateful for all the good things in my life. It was and is still such a shock to have to imagine a future that is different to the one you'd expected to have, if that makes sense. When things started to decline quite rapidly I got quite upset with my GP as I really didn't understand the implications of CKD and renal failure. She seemed to think that telling me that 'none of us know what's going to happen in the future' would offer me some comfort, when in fact it had the opposite effect as now I do know what's likely to come I just don't know when. It's the invisible ticking clock that you have no control of that seems to cruel.

Anyway, I need to get on with it, make the most of it and probably keep trying to forget about rather than dwell. Am so pleased to be able to talk about this here as it's not easy with those close to me.

After a hard long life and recently dialysis then transplant I say

THE FUTURE IS UNCERTAIN AND THE END IS ALWAYS NEAR
LIVE LIFE TO THE FULL WITH WHAT WE HAVE LEFT !
WHATEVER WILL BE WILL BE, THE FUTURE IS NOT OURS TO SEE!

Hi serizawa1234,

Unfortunately, no one can tell just how long it will be in coming. We are all different, and it is not half as bad as you think when you get there.