Kidney Patient Guide

Hi All,

Its been some time since I posted here. I was wondering how others with a blood creatinine level of over 1,000 feel? I've been on dialysis for 3 years now and I have started to feel this odd sensation, its hard to describe, its almost like a numbness or pins and needle feeling throughout by legs, arms and hands. Has anyone else experienced this sensation. I am still working full time and studying part time however I have noticed I seem to be a lot more tired lately.

Would be interested to know how others feel.

thanks

Alison

Shouldn't you be feeling better on a creatinine level of 63.7 or is it 637? I'm transplanted for 10 years and my creatinine is never higher than 130 or lower than 120. Pre dialysis I was in the 1800's.

He is over a 1000, how is that possible when your doing dialysis.

It is certainly possible to have creatinine of over 1000, mine sat at c1200 for the last couple of years before tx - it is very individual just how well you tolerate that level. For me I have a problem with clotting so HD was problematic and I was only able to stay on PD because I could tolerate that level of creatinine.

Are you a PD or HD patient? If HD, is that pre or post dialysis? Mine was always >1000 pre-dialysis, and somewhere in the 300s post-dialysis. I always felt a bit energised after HD, and as I was twilight shift patient I usually didn't get to sleep before 1am.

Once I moved from PD to HD, I had enough energy to return to work, though during the last few months before I received my transplant, I found I was increasingly tired.

As for the numbness, pins and needles talk to your renal team about it. I don't recall suffering from either of those specifically. That said, I used to get leg cramps a lot at night.

sorry - I am a PD patient, have been on PD for 3 years now while waiting for a transplant. I mentioned the numbness to the nurse, she thought it was likely due to my poor blood results, to try and help me stay on PD they have increased my bags from 2l to 2.5l and I am happy to say, day 3 of doing this and the strange feeling seems to have gone (fingers crossed). My boyfriend is being looked into being a possible donor so fingers crossed, I know others seem to manage well on Haemodialysis but I can't see it working for me - I always like to be out and about doing things and as I currently live alone, doing it at home wouldn't be an option. Thanks for all who have replied.