Blood creatinine over 1000, how do folks feel?

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balib310582
Posts: 9
Joined: Tue Mar 12, 2013 3:42 pm

Blood creatinine over 1000, how do folks feel?

Post by balib310582 »

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
Last edited by balib310582 on Thu Jul 03, 2014 4:35 pm, edited 1 time in total.
33 years old
diagnosed with Alports syndrome
started PD dialysis March 2011
joined transplant waiting list March 2011
transplant received 5 Nov 2014
From Aberdeenshire, Scotland, UK :)
jstuartrobson
Posts: 36
Joined: Thu Apr 17, 2014 1:48 pm
Location: Spalding, Lincolnshire

Re: my creatinine is 63.7..how do others with same level fee

Post by jstuartrobson »

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.
Chris In Trowbridge
Posts: 94
Joined: Fri Jan 03, 2014 10:46 am

Re: Blood creatinine over 1000, how do folks feel?

Post by Chris In Trowbridge »

He is over a 1000, how is that possible when your doing dialysis.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Blood creatinine over 1000, how do folks feel?

Post by MandyV »

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.
Adam
Posts: 69
Joined: Wed Jul 27, 2005 11:31 am
Location: Southern England

Re: Blood creatinine over 1000, how do folks feel?

Post by Adam »

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.
July 2008 - transplant - living related donor
April 2005 - dialysis - tunnelled neckline, then CAPD (15 months), then HD (left wrist AV fistula)
January 2004 - diagnosis - IgA Nephropathy
balib310582
Posts: 9
Joined: Tue Mar 12, 2013 3:42 pm

Re: Blood creatinine over 1000, how do folks feel?

Post by balib310582 »

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.
33 years old
diagnosed with Alports syndrome
started PD dialysis March 2011
joined transplant waiting list March 2011
transplant received 5 Nov 2014
From Aberdeenshire, Scotland, UK :)
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