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Author Topic: When will the pain stop  (Read 3161 times)
heatherh
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« on: December 30, 2008, 02:27:12 PM »

I started cycler on Dec 18 and everything goes pretty good except the pinching. Every night and every drain I wake up in pain from the pinching. I move around from side to side but most times the only way I can get relief is to sit on the side of the bed or get up and move around. I fill with 2000 ml and it can start pinching as early as 1200 mls. I would really like to sleep through the night without the pain. I have on a couple of times hit the bypass button in desperation however you cant do this too often as it defeats the purpose. Any suggestions? Will it get better?








EDITED:Moved to home dialysis area-kitkatz,Moderator
« Last Edit: January 01, 2009, 07:45:42 PM by kitkatz » Logged
breezysummerday
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« Reply #1 on: December 30, 2008, 10:31:15 PM »



                   can I get a witness?       
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caregiver to Ray
renal failure 6/08
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~thank you epoman~
peleroja
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I have 16 hats, all the same style!

« Reply #2 on: December 31, 2008, 07:24:46 AM »

Sounds like something's wrong with the catheter.  It could bee too high, too low or scraping on something.  I'd talk to your doctor and describe the sensation.  Whether doing manual or cycler, I never had a "pinching" sensation, just a feeling of emptiness when my drain was almost done.  Good luck to you, and be sure and come back and tell us what happens.
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dh514
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« Reply #3 on: December 31, 2008, 09:24:37 AM »

I started on Pd in mid October. During training the pinching was horrible. After a couple of weeks it went away. The only pinching I have now is during the initial drain and that is bearable. The pinching starts for me when I am almost dry and they told me if I wanted to avoid the pain I could do a bypass which I do not do. Last night I was awake during my third drain and I felt nothing.

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rookiegirl
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« Reply #4 on: December 31, 2008, 12:07:41 PM »

Heatherh,

I know exactly what you are feeling.  I'm going to share with you my experience so far on PD, but remember everybody is different and not everyone experience the same thing.  I've been on CAPD for over 1 year now.  During my PD training I did CAPD and practiced on CCPD (cycler).  I was only on the cycler for 4 nights and that is all I can tolerate because of the pinching as you describe.  Four nights of no sleep is all I can handle and I begged my Neph to put me on CAPD.  This is what I've been doing since Oct 2007.

I still have the pinching problem at the end of my drain.  But, as soon as I feel the pinch, I close/stop my transfer set.  This is working out best for me.

When I had my transplant work up, they did an ultra sound and x-ray of my abdomen.  Come to realize my catheter is pretty low.  I was told by my Neph there is only 1 size cath and I'm pretty short with a short torso.  Guess this would explain the pinching which will most likely never go away, but I'm able to tolerate much better.

I guess to answer your question about will it go away?  It really depends on each individual.  For some, like me "never" but you get used to it.  For others, the pain goes away or they never had it to begin with.  Those are the lucky ones.  I'm so jealous.

Good luck to you and I hope you will be one of the lucky ones.  Crossing my fingers for you.

~RG
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
pelagia
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« Reply #5 on: December 31, 2008, 02:29:30 PM »

Only one size catheter?  What's wrong with the manufacturers?  That seems really dumb to me.  Oh right, this is medicine for profit...
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Red from Canada
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« Reply #6 on: January 01, 2009, 08:19:08 AM »

The pinching pain can be avoided by being put on a TIDAL program, where they leave some fluid in and don't drain completely.  After being on Tidal for several months, I weaned myself off up to the full 2000 ml and haven't had any pain since.  Once your peritoneum toughens up and you get used to the treatment, the pain DOES go away.
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pelagia
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« Reply #7 on: January 01, 2009, 07:23:37 PM »

 :flower;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
heatherh
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« Reply #8 on: January 05, 2009, 12:25:39 PM »

Wow thanks for all your feedback. I recently had 2 nights where I slept through a couple of the drains. Maybe this means I am getting tougher. I really hope so because I find cycler so much more convenient than twin bag. I guess I will hang in there a bit longer. Also my nephrologist took me off a final fill so I am empty during the day. I do like that as some of my clothes finally fit again.
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