How does it feel?

[Mgt8]

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?

[clem556]

Hello there, it took a while for my kidney failure to be diagnosed, so, I have experienced kidney failure.

Firstly you will still pass urine, but your kidneys will not clean your blood sufficiently.

So, you will feel ill, your skin will not be nice and pink; it may be very pale, grey and or yellow. When you eat something, it will make you feel worse, you will vomit frequently, you will feel sleepy and have no energy. Things that you liked doing, will not interest you.

The longer you leave it the worse all your symptoms will get. Every thing you eat is basically poisoning you, the toxins will build up, and you are heading towards many things that can kill you. Which I don't think will be helpful to know. You can easily find them out else where.

As you are already being monitored you will NOT, repeat NOT, get anywhere near that. You and your medical people will know when you need to start dialysis, and hopefully never get to feel so ill.

Good luck for the future, dialysis is a new thing but, you will soon adapt, and take it in your stride.

I have been dialysing for 8 years, and apart from the odd hic up feel well.

I hope this helps?

Clem

[fredinspain]

You wont know they have finally failed as dialysis will start before that to assist your kidneys in removing toxins such as excess Potassium and Phosphates taken with your food. When I first went on PD I felt fine some 4 and a half years ago. Two years ago I had a fistula put in for when PD started to fail, which it hasn't yet.

If you sign up to Renal Patient View you can look at your blood results yourself and it tells you whether they are in acceptable range but it may not be available in every Trust. In my Trust bloods taken at 10 am are often available mid afternoon the same day and always by the next day.

I am sure if you can access them someone in the dialysis unit will explain the meaning of all the results. Merry Christmas & a Happy New Year.

Fred

[Kibibi90]

I promise you, you will know when failure is imminent. I say imminent because you will reach a point where even getting out of bed is not worth thinking about and this is the time to contact the dialysis unit and start dialysis. As one of the other correspondents has said, you will not be allowed to reach total failure because your renal team will notify you when they think the time has come for you to start. Either way you'll find arrangements will be made for you quickly once you have started you will begin to feel better.

The main thing is to be sensible, listen to your body and be honest with yourself. Accept guidance from your doctors, and you will know the right time for you.

All the very best for the future - take care...

[Mgt8]

Thanks for the comments guys. All very helpful. Useful to get the points of view from people who have experienced this.

Feel I have a better understanding now.

Best wishes

Margaret