PKD Charity for Autosomal Dominant PKD
618 members133 posts

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.

1 like

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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