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Des
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« on: November 18, 2009, 01:57:51 AM » |
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I have read and heard that with PKD you still pass urine..... but it just doesn't "filter" the way it used to?
Please tell me about all the PKD'ers experience with this?
Edited: Fixed subject line error - okarol/admin
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« Last Edit: November 20, 2009, 11:16:52 AM by okarol »
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...
South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
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whiskeyfrank
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Posts: 46
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« Reply #1 on: November 18, 2009, 04:49:16 AM » |
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I have had PKD since 1986 and my urine production was totally normal up to the 2nd of October, when i had to have both kidneys removed.
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PKD - diagnosed 1986 Fistula added July 2009 Bilateral Nephrectomy Oct 2009 Fistula Failed Oct 2009 HD started Oct 2009 Live donor from mum Jan 4th 2010 mum and me both great Started a blog on my condition from stable now to Living Donor transplant (hopefully) My Blog - http://pkddiary.blogspot.com/ |
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lizabee
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« Reply #2 on: November 18, 2009, 07:12:21 AM » |
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I have PKD and I still pee, until they take out my last kidney.
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willowtreewren
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« Reply #3 on: November 18, 2009, 07:16:16 AM » |
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Hey, Des,
This is the only place in the world where talking about peeing is perfectly normal! Hahaha
Carl still has normal output with PKD. That means we don't need to pull off extra fluid during dialysis. We still need to cleanse his blood, though!
Every once in a while, especially if we have eaten out and he has had extra sodium, his weight is up. I'll take of a bit more fluid then.
But peeing is still a go! Haha.
Aleta
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Wife to Carl, who has PKD. Mother to Meagan, who has PKD. Partner for NxStage HD August 2008 - February 2011. Carl transplanted with cadaveric kidney, February 3, 2011.  |
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RightSide
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« Reply #4 on: November 18, 2009, 05:46:14 PM » |
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This is the only place in the world where talking about peeing is perfectly normal! Hahaha
Oh, no, you forgot about the Urology forums on the Internet. And you should see what they talk about on the Irritable Bowel Syndrome support forum! http://www.ibsgroup.org/forums/ |
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Des
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« Reply #5 on: November 19, 2009, 12:26:14 AM » |
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So far it seems that PKD people do go on pee-ing..... as long as they keep their kidneys....
Keep the responses coming please....
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...
South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
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Ang
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« Reply #6 on: November 19, 2009, 04:08:12 PM » |
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if your kidneys are removed so does the peeing,generally speaking you will stop peeing at some point in the journey,just depends on your situation
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live life to the full and you won't die wondering
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cloud393
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« Reply #7 on: November 20, 2009, 09:06:57 AM » |
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I was diagnosed with PKD in 1990 and my urine output has decreased significantly. Mostly in the last year and a half. I started PD in Feb. 2009. I also had two uncles with PKD and they lost all output. I guess it goes with the territory.
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May you live as long as you want and never want as long as you live.
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charee
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« Reply #9 on: November 20, 2009, 06:50:45 PM » |
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I lost most of mine after about 6 months on hemo , before that it was fine .
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Home Hemo 18 months
Live donor transplant 28th October 2008
from my beautiful sister
Royal Prince Alfred Sydney Australia
Live donors rock
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Ken Shelmerdine
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« Reply #10 on: November 21, 2009, 04:47:03 AM » |
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From my experience on IHD I do believe that PKD patients generally keep a good urine output for longer than usual in kindney failure. I don't know why that is. Maybe the build up of cysts which causes the problem in the first place is only obstructive to kidney function rather than the directly destructive pathology associated with other kidney deseases.
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Ken
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