I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: IOnlyGet5 on January 24, 2018, 04:35:51 PM
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I did a couple of weeks manual & now have started cycler...but I am concerned by how much more painful my fills & dwells are compared to manual exchanges, even though I'm filling with a little LESS than 2000 (warmed solution) now. It's very painful & makes it impossible to get to sleep.
The closest I can describe is it feels like being 9 months pregnant - no position change helps, you are just in constant pain & tight as a drum from the top of abdomen down to groin area. Even though my head is elevated with a wedge, it's hard to breathe. Or move...lying on back or sides or sitting up or standing...it all feels horrible. You can't bend down or to the side without increasing pain...all the negatives of feeling like you are pregnant without the blessing of a baby to look forward to.
There's also bad drain pain but it's eclipsed by the pain & severe discomfort of each fill & dwell so that I look forward to the drain pain because at least it temporarily alleviates that tight dwell pain.
I haven't slept in 4 nights as a result of this & it's only my 4th day on the cycler!
Any advice?
Is this normal?
Will it get better with time if I hang in there?
Can anything be done to alleviate this?
My catheter is in the right place per an e.r. ct scan less than 2 weeks ago (for severe abdominal pain unrelatrd to dialysis while still doing manual exchanges).
Other than the pain & lack of sleep I like using the cycler over manual exchanges but the pain is a severe deterrent to wanting to contime dialysis.
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Well it gets better, but maybe you can't tolerate 2000 per cycle. I've been on PD for a little over a year and I don't sleep nearly as well as I used too. Always aware of if its filling, dwelling or draining, what's going on, etc. and it's noisy! Helped when I adjusted the screen to go dark after a few minutes. More cycles of less volume may be better for you, but it takes longer of course. Good luck but let your dialysis nurse know how awful it is.
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Exactly! Smaller fills and more cycles may be your solution.
Smaller and/or Leaner people may not have the abdominal space needed for a lot of fill. Selecting a comfortable fill and adjusting the number of cycles and time for each one may be the solution.
Talk to your Nurse to find out if this can be done.
Tidal may be an option. It really helped me.
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Are you constipated? If so, try a few stool softners. I felt what you are going through when I first got on a cycler. It's horrible. What kind of system do you have? If's an old Baxter, read the manual, and it should cover unpleasant stomach conditions and causes. I don't know if it's in the new manual. Those things are so thick you have to be a detective to find the information you need.
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I just had the thought that the temperature of your cycle may be much higher than 'comfortable' for you.
Seriously, find a thermometer, stick it under the bag on the cycler and see what the temp is.
How were you warming your manual bags? If you still have that heater stick a couple of bags in it over night then tomorrow take the temp on them, see if they are different from your cycler.
If so CALL your Nurse. She can walk you through how to reset the Cycler temp.
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Initially my wife's cycler was programmed to 2,000 and it was painful for her. They reprogrammed her machine to 1,500 and added more cycles. Took another bag of fluid but it took care of the issue. As time goes you may find the the fill can be upped gradually. Right now she's on tidal therapy with her fill set for 2,200. Talk to your nurse, they certainly should be able to accommodate you!
Jack