cycler at night

[skinnacat]

yes i did try the cycler but this really weird strange thing happened and i am
guessing hardley nobody has ever had this problem. i had severe nerve pain in my
abdomen...it was very bad and it was on both sides and would shoot up into both sides
of my neck and my D nurse didn't know why i was getting it so she put me on this nerve
medication but it had so many bad side effects i didn't want to take it. so i decided that
manuals were the best option. and for some strange reason only when i use the machine do i experience the pain... i don't have the pain with the manuals.
i also don't think dialysis should not be that painful in the first place.
i just can't win it seems and pd is working so good for me...my labs are super good...my albumin is 4.
i want to stay on pd for as long as possible because i really like being able to eat the stuff i like and not
having fluid restrictions.  hemo freaks me out!!!  i only want do to that as a last resort when i have no other
options. 

[jeannea]

Was the pain during filling, draining, dwelling, or all the time? It's good manuals are working. However, I will tell you that for me the dreading of HD was worse than actually doing HD.

[skinnacat]

yes the pain was all the time and was the worst when i layed down to go to sleep.
that why i couldn't deal with it because every position hurt so bad i had to sleep
sitting up...no way can i do that every night and at that time i thought i might just have
to go on hemo...i certainly was not happy but nerve pain is so very painful...unlike anything
i have experienced before...thats good to know that hemo may not be as terrifying as i imagine
thanks for the encouragement...how long have u been on dialysis??

[Riki]

I used to have pain if the machine was trying to pull too much fluid.  I would go into the nurses menu and change the amounts on days when I knew I didn't need to pull as much.  I always had really high UFs, and on occasion, would accidentally dehydrate myself.  I miss PD.  It was awesome.  I agree, though, the dread of HD is not as bad as actually doing HD.  I never thought I'd be able to do HD, but when it came down to that or death, you bet I went to HD.

[jeannea]

I did 6 months of hemo and 2 1/2 years on PD before my transplant. I liked the cycler. I'm not the type to remember when to do manuals 4 times a day. Yes there were times of pain, but I think the pain was less than yours. I kept things nearby so that if I couldn't sleep I could read or watch tv or do crossword puzzles. It might be that with time doing manuals you can try the cycler again.

[Charlie B53]

When doing manual PD I would on rare occasion get a terrible low ab pain at or near the end of a drain.  Like the cath had 'sucked' up against a nerve and wouldn't let go.  It would soon so away upon filling.

I haven't yet had pain using the cycler.  My machine is set for 'Tidal' and 80%.  Holding after the last Drain until I get up so I can hit the Stop, then Go again to restart that last drain as once erect it drains abit more fluid.  Only then do I Arrow down to the 'Bypass' and 'Enter' to start my Ico fill which I carry all day.

We set the machine this way to be absolutley certain there is no possibility of an over-fill.

I have the machine on an old fishtank table near my bed so it sets only about a foot and a half above my bed,  I don't think the small difference in elevation makes any difference in pump pressure or vacuum.

Upper body pain can be caused by air in the lines getting inside you.  It is critical that you are careful handling the hoses and that the patient hose is primed to within an inch of the end so you do not get any volume air inside you.

Doing manuals for a year and a half I well understand the daily routine.  The constant interruption of any activity, stop, clean up, go do an exchange, then try to go back to doing what you were trying to get done.  More than just a bit awkward, and seriously limits your time away from home as your HAVE TO get back in time for that next exchange.

The cycler is working great for me.  I sorry that is hasn't worked well for you also.  Also sorry for writting a book, I don't know when to shut up.

Take Care,

Charlie B

[skinnacat]

thanks charlie B for the nice response....the way i see it for me is doin 4 manuals a day is still way better than doin in center hemo. i just really want to avoid that if possible.

so the manuals will be ok for now and my nurse said i can do them whenever...she said i can work them around my schedule so that it works better for me.

i actually had my checkup today and the doc still seems unsure what is causing the nerve pain but wants me to try the cycler again at some point but i dont think i will

the pain was to intense....was really horrible and i would probably have to go on hemo if the manuals stopped working for me.

but i still have lots of urine left so that will hopefully be a couple years from now...i hope!!!

[jcanavera]

My wife's pain was based on fill levels.  She was 80% tidal with a 1,900 ml fill on 8 cycles per night.  She started good on her kinetics although she did dread the treatments.  Back at the end of last year her kinetics fell below minimum and her nurse said she needed to start getting more fluid in the fill.  I protested and said no, there must be another way.  As it ended up the nurse crunched the numbers and came up with a new program using tidal 50% with 18 cycles in the same 9 hour treatment time.  We were skeptical that 15 minute cycles would work, but the first kinetics test showed 30% improvement over her previous best test, (which her doc and PD nurse were thrilled with).  In addition we are using more fluid but with the additional cycles she actually doesn't have the extremes in filling that she used to have.  Her treatment is very comfortable and she is happy.  Bottom line this program was developed by a different nurse at the dialysis facility.  Not the one who she is assigned to.  The answer sometimes in my opinion is telling your nurse that this program may need to change to see if they can minimize the pain.  Some nurses aren't willing to do the work needed to see if there are alternate ways to program the cycler, which will result in the same or better results. 

Jack

[Charlie B53]

My wife's pain was based on fill levels.  She was 80% tidal with a 1,900 ml fill on 8 cycles per night.  She started good on her kinetics although she did dread the treatments.  Back at the end of last year her kinetics fell below minimum and her nurse said she needed to start getting more fluid in the fill.  I protested and said no, there must be another way.  As it ended up the nurse crunched the numbers and came up with a new program using tidal 50% with 18 cycles in the same 9 hour treatment time.  We were skeptical that 15 minute cycles would work, but the first kinetics test showed 30% improvement over her previous best test, (which her doc and PD nurse were thrilled with).  In addition we are using more fluid but with the additional cycles she actually doesn't have the extremes in filling that she used to have.  Her treatment is very comfortable and she is happy.  Bottom line this program was developed by a different nurse at the dialysis facility.  Not the one who she is assigned to.  The answer sometimes in my opinion is telling your nurse that this program may need to change to see if they can minimize the pain.  Some nurses aren't willing to do the work needed to see if there are alternate ways to program the cycler, which will result in the same or better results. 

Jack

Great news!   Love it when someone takes the time to step in and figure out a problem, and have such a great improvement in numbers!   I thought my cycles were short at one hour each compared to 4 hours when doing manuals.   This could be a viable solution for a few of us, someday, when our labs need further improvements.

Thanks for the info.