How does it feel?

Good morning all

I'm finding this website and everybody's posts really interesting and full of useful ideas having been a member for a couple of years now. I have learnt about all the processes and procedures as kidneys deteriorate and all the things we can do to make this journey work for us. However, there is one question I cannot find the answer to.....

I have adpkd and am at stage 5 approaching dialysis. My gfr is 10 and I'm having my fistula made early January...... everything is in place for me to start dialysis when I need it. But how will I know when that is? I'm enjoying life to the full and don't dwell on this but it would be useful to know what to expect so I can recognise it when it starts to happen.

When I ask this question most people say, your doctors will tell you or when your gfr is low; but it's my body, surely I will know, but how?

It recently struck me that nobody mentions what it feels like when your kidneys eventually stop working. Having googled this, I am none the wiser..... the only info I can find is that they mostly go gradually. I figure, there must be a day though where they no longer work; a moment when you cross the line from not needing dialysis to needing it. What does this feel like? How do you know you're kidneys have finally failed?

2 Replies

  • Hi Mgt8, I cannot answer most of your questions as luckily I got my transplant before I got to dialysis but I had a gfr of 10 when I got my transplant and was working as normal but did find it harder and harder as I have a quite physical job. I was told by my consultants I could make the choice when I wanted dialysis so long as my potassium was ok, but when my gfr hit 8 I would have no choice dialysis would have to start. I think for most of us because it is a slow gradual deterioration we do not realise how poorly we have become and just get on.

  • I can only tell of my experience but by the time I reached grf 6 I did not have the energy to do anything. As long as you have got your fistula ready I would say carry on as long as you feel well enough. My neph had been saying I was ready for dialysis 2 years before I felt I needed it and I had 2 good years of normal life. You are right it's your body and you know how you feel but please do not kid yourself you WILL need dialysis soon.

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