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Author Topic: Just joined IHD Message Board  (Read 2255 times)
louman1961
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« on: July 21, 2019, 02:33:57 AM »
Hi,
I was diagnosed with PKD in 2010, I found out by a catscan that showed bubbles on my kidneys on the diagnostic imaging scan.
I'm currently doing PD at home about a year and a half.
It was quite a life changing event and getting used to this new daily night dialysis routine.
I have my ups and downs, emotionally and physically and getting used to chronic pain on some nights.
I found this message board while searching on Google, for support for people who are on dialysis.
I'm looking forward to hear from members of this message board for support and some advice how to cope with dialysis and it's challenges and how to stay positive when dealing with kidney disease.   
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cassandra
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When all else fails run in circles, shout loudly
« Reply #1 on: July 22, 2019, 04:24:07 AM »
Welcome to the site louman1961


   :welcomesign;


Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #2 on: July 22, 2019, 04:43:51 AM »
 :welcomesign; Sorry you have to be here.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #3 on: July 22, 2019, 05:05:20 AM »

Welcome to IHD!

Chronic Drain Pain can go a couple of different ways, either getting better in time, or continue.  I was on PD for my first 3 1/2 years and I soo learned I would wake up with drain pain while flat on my back. Turning on to my left side and it was much much better.  However in my sleep I would again roll onto my back and within a couple of cycles the drain would again wake me up and I would again have to turn onto my left side.  So for me, body position did make a huge difference.

I have other chronic pain from permanent injuries and my VA Pain Specialist has me taking Methadone.  Not being a Heroin addict I was shocked when he suggested Methadone but I soon learned it was originally invented as a pain med.  And it works wonderfully, NO Constipation which is a serious problem on PD when using any of the opiate based pain meds.

So if body position doesn't help you much then have a serious talk with your Dr's.

Take Care,

Charlie B53













Sp mod Cas
« Last Edit: July 23, 2019, 09:11:00 AM by cassandra » Logged
fightingPKD
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« Reply #4 on: July 26, 2019, 12:02:58 PM »
Hey OP, PKD guy here as well.  Diagnosed when I lost a kidney to it in 2004.   Last one is slowly dwindling away now. Just went to register at my local transplant hospital this week.

Hang in there man, it is all pretty terrible.  Keep fighting.
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louman1961
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« Reply #5 on: August 03, 2019, 04:01:47 AM »
I would like to thank everyone for welcoming me to this message board site. :)
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