Anyone else give up on the PD cycler?

[solid98]

I've been using my new (rebuilt) Liberty cycler for 9 nights and have only slept two of those nights because I didn't hook up.

If it's not the noise of the machine keeping me up, I listen to the rhythm of the drain line in the terlet. If it changes the "beat" I keep repositioning in the bed to see if it will pick up. Alarms aren't the problem (I've had 4 total in 9 days.)

I sleep on my side/stomach which doesn't aid draining. Since my cath is toward the left side, surprise, I only want to sleep on my left side. I tried to set my timer on my phone to wake me up before a drain cycle so I can roll on my back or even sit on the edge of the bed. That doesn't work all the time. I had a drain time of 70 minutes last monday morning when I was sitting on the edge of the bed and still didn't get all 2200ml out. Drain 0 on monday night was 3600ml on a 1200ml fill of 2.5. Thought I was going to explode all day monday

Doing manuals 4 times a day sucks but not as much as staying awake all night and sleeping all day to make up.

[joke]And to everybody who is going to go out of their way to post "I didn't have any problems with my cycler." here is a  because I didn't see a "flipping the bird" smiley here.[/joke]

And that's another thing, when I was only doing manuals I rarely urinated, but since I started the cycler, I'm peeing like a racehorse.

[kickingandscreaming]

Have you let your nurse and Fresenius know about this issue?  I use a Baxter cycler, so my experience is different.  I also sleep on my back in a slightly inclined position and that helps with draining.

[Fabkiwi06]

I'm on the same type of cycler. I've had the same kinds of issues. I haven't completely solved them, but I have a few little things that have helped.

My line is also on the left side... and of course that is my favorite side to sleep on. What I've done to kinda help with that is have a pillow longways on that side of the bed. I feed the line out underneath it. That way, when I roll on to that side, there is a little bit of a buffer and it keeps me sort of on my back too. Sometimes I try to time my final drain where I'm already up. So, during my final dwell I'll unhook and grab breakfast or coffee, and hook back up to drain. Sitting seems to make it worse... slightly inclined on a bunch of pillows works for me. It's actually made for a nice routine... I drink my coffee and catch up on news and Facebook.

Do you have fibrin issues? Sometimes I have to shake the line a bit if there is a bit of fibrin in there. Talk to your team and see if they can give you stuff to help that.

How is your blood pressure? When mine is on the low end, it take FOREVER to drain. My doctor said that it's kinda common for that to happen.

If you're having days where you're really full, grab an extra bag and do a midday drain/fill. I'm quite petite, and there are certainly days where I've had to do that so I can actually eat without feeling like I'm going to hurl due to being so full.

The noises also drive me insane. It was much better during the warm months because I could have a fan on as white noise to cover it up. Maybe look in to a white noise machine or fan or something of that sort?

[solid98]

I see the neph next wednesday, but, I did talk to my nurse earlier this week and told her what problems I was having but told her I'd keep plugging away and see if anything improves.

When I lay on my back, drain times are about 20 min and fills are 8 min for 2200ml so I don't think it's a fibrin issue, but the last two nights, I did load up on the heparin just in case. Bowels are empty, also.

Blood pressure has actually been better. Although how that is with less than 2 hours "sleep", I don't know.

I even tried to keep the TV on so I couldn't hear the machine "ticking" away. Didn't work. I just can't relax plugged in.

The darnedest thing is, I had been sleeping better since starting manual PD. I would fall asleep on my right side, and stay in that position all night. But since I "can't" do that anymore, I CAN'T do that anymore.

Another thing I noticed, after the dwell, I hear the machine start draining and the (for lack of a better term) "ticking" will stop in the middle making me think there is a kink in the hose. It'll be silent for 3-5 minutes, then start draining again. Could the machine be weak? I had read reports of people who found the drain cycle "uncomfortable" when drained dry, but I feel nothing when totally drained.

I just know their solution is to whack me with a CPAP. Think Jack Daniels is FSA eligible if you have an Ambien script to go along with it?

[Charlie B53]

I am half shock to learn there can be so much difference in how respond to using a Cycler.   First, I am NOT normal.  But sometimes I am brainless, or so my Wife says.

My first Cycler was noisy, but I use a CPAP so I easily got used to hearing it.  It finally died, it guess the noise was or should have been a sign something was going wrong.  Oh Well.  My new Cycler is MUCH quieter.   But I can still hear it slightly.  Once my CPAP turns on, NOTHING.

I have to ask how long is you patient hose?  Is it long enough to move the machine out of your bedroom?  Would that distance help with the sounds?    The major drawback is you having to go farther to reset whenever it alarms.

Just before mine gives me the three beep warning before a full alarm it seems to pause, sounding like it is taking a big breath before yelling.  Often I hear that and wake up and begin to roll onto my side as the first beep goes off.  Sometimes if I roll quick enough it only gets out two, rare occasion even one beep and silent running again.   I am not really a light sleeper.  Only that I have somehow become very 'attuned' to my Cycler.  Told you I am NOT normal.

I hope this works out for you.  I did manuals for over a year and really do appreciate my Cycler.  The inconvenience of set ups very much outweigh the multiple interruptions of my day doing manuals.

[kickingandscreaming]

How about ear plugs. You'll still hear the alarms. My Baxter cycler is silent.  I'm feeling so lucky.  But it does show that silence is possible.

[solid98]

I'm sure my problem is purely psychological (The voices in my head took a vote. )

The best way I can describe it is I am hyper-aware of the machine being there. Hopefully, I'll learn to relax eventually. I was talking with an ex-GF this morning and she reminded me of how many times I had to sleep on the couch, when we lived together, because I couldn't get to sleep. There was just times I couldn't relax even after three years together.

I already know if I had earplugs and couldn't hear the machine, or if it was out of the room, I would HAVE to get up and LOOK at the screen to make sure it is still operating. How wack-a-doodle is that?

[cassandra]

I'm pretty sure I was prescribed Diazepam to help me sleep during APD.

[Charlie B53]

Have you tried chemical sleep aids, OTC's like melatonin, and/or benadril?

While the Dr's had me detoxing from high pain meds there ws no way I could get to sleep until totally exhausted.  I'm talking days.  They helped when I needed it. Only thing I didn't like was some morning grogginess.  It was easy to stop them when I no longer needed them.

Some people have a hot cup of tea to relax, read a little, whatever may work for you.  Won't know until you try.

Good luck with finding a method to works.

[solid98]

Sometimes, for no apparent reason, I get super sensitive to my nighttime insulin and go hypo in the middle of the night, so, I'm a little wary of using sleeping aids for fear I might not wake up during an episode.

I hooked up last night and did pretty good. I waited until after the start of the first dwell when the machine was silent. Only woke up at one point super anxious, for some reason. I told myself to knock it off and go back to sleep and it worked. Lost 51 minutes of dwell time, fill times were all right at 8 minutes, second drain was light but third made up for it. Drain times were not bad, still floating between 20 and 30 minutes and no alarms. Total UF was 1400 with 2.5.

I have been playing around with how to place and tape up the line. The only thing I know for sure is I really have to shave my chest.

[cassandra]

Glad to hear it's all improving solid98. Good plan to shave, stay away from the wax.

Love, luck and strength, Cas

[beckums70]

I don't know how long your tubing is with the Liberty machine, but with the Baxter one I have about 20 feet.  I put the machine on the other side of the room (end of the dresser that sits opposite the foot of my bed) and I don't hear the clicking and popping and hissing nearly as much now.  When I first started it was on the bed beside me and it not only bothered me, it kept my son awake (he was 5 at the time and still slept with me at night) and kept my boyfriend awake when he stayed over.  Now that it isn't right beside the bed I sleep much better, even though I sometimes have to get up to turn of an alarm if shifting positions doesn't do the trick.  With the Baxter it will beep three times in succession and then stop, so you have time to adjust yourself without having to reset the machine.  I'm not sure how your machine works or if putting it farther away from you bed would work.

[Simon Dog]

10ft standard with an alternate 20ft line set available.

I don't know how long your tubing is with the Liberty machine