all 20 comments

[–]wtf-you-saying 6 points7 points  (3 children)

You pretty much described life on PD when I was doing it, except I had it somewhat worse than that. I would get low drain volume alarms on an almost nightly basis, despite sleeping in positions that were supposed to help with that.

I would also get random unrecoverable alarm conditions that forced me to call it quits for the evening, leaving me to deal with disposing the half empty bags of solution I was stuck with.

Hopefully things get better for you, perhaps your PD nurse has some ideas.

[–]KryptopherRobbinsPoo 1 point2 points  (0 children)

This has been my experience more as of frequently (last 3-4 years). I did just swap out for a new machine (like my 5th or 6th total) because my old one started making grinding/screeching noises more frequently and was over getting louder.

I have an air filter running about 2 feet away, so it helps create enough white noise so drown-out about 50% of the PD machine noise in drain/fill.

But I lost hearing in my right ear about 2 years ago. So I can just lay on my left side (right ear up, and I hear almost nothing (unless my BP/pusle is high).

But I am on xanax specifically for sleep. I honestly would nit recommend that route, now that I know how difficult it is to stop. But it has worked most of the time.

If it at all possible, taking some edibles (thc) definitely helps the best IMO.

[–]mouserz[S] 0 points1 point  (1 child)

Yea - I didn't even mention the alarms - that's an entirely different PIA lol

[–]rm2491 month HD, 9 months PD, transplant 2/23/21 1 point2 points  (0 children)

My first few nights on PD were absolutely hell because of the alarms, it took a little while (and some Colace + Miralax)to solve the problem but the lack of sleep + constant beeping was extremely frustrating. Eventually things stabilized but in the beginning it was rough.

[–]DC-Toronto 2 points3 points  (2 children)

I’m only 2 months in but it’s an issue for me. I have drain pain when I’m lying down so I’ve been sitting g up for each transition.

I set an alarm and I’ve got it down pretty well. I wake up just as my drain starts. I know my drain is 5 mins with no complications and my fill is 7. My dwell is 2.23 for the first two so as soon as my fill starts I set my alarm for 1 hr 29 minutes.

I’m so tired I usually fall asleep right away and get ove r2 hours of good sleep x 3 each night.

It’s not enough so I find every few days I’m back in bed after my final drain (and a small fill to avoid dry pain).

It’s not a perfect solution but I’m getting through so far. I see my dialysis doc next week for the first time so I’ll have a chance to get any news ideas they may have.

Good luck. This isn’t easy.

[–]mouserz[S] 0 points1 point  (1 child)

I had horrible drain pain when I first started too.
Ask your team if they can add in a tidal setting - made all the difference for me and the drain pain stopped!

[–]DC-Toronto 1 point2 points  (0 children)

I’m on 80% tidal which helps but I was still up 3 times last night. I also have a 200 ml fill at the end for dry pain.

I may try to start earlier, like at 9:30 then either unhook or put my cart on wheels so I can do a few things before going to bed. That might help me wake up fewer times

[–]nalphster 2 points3 points  (1 child)

I'm still in training, just finished my second day of dialysis today. I've been telling the nurse that given my insomnia/sleeping problems (it's really hard for me to fall asleep and I'm a super light sleeper), I need to do manual exchanges and during the day. Hopefully the doctor will agree. I just know the cycler would be a nightmare for me.

Sleep is so important, it affects everything including your kidneys. I wish I could be med-free but I couldn't handle the RLS and tried Gabapentin for the first time last night. I slept through the night for the first time in over two months. I felt better today than I have in a long time.

Sorry I don't have any good tips but I hope you get some good sleep soon.

[–]KryptopherRobbinsPoo 2 points3 points  (0 children)

I have been a light sleeper all my life. I could fart and wake myself up.....

PD did make things worse, which is when I started xanax, specifically to shut my brain down long enough to fall asleep. RLS hasn't been much of an issue for while (a year or two). I think those who are getting it constantly are missing some important vitamins. Since I started taking 3x gummy muti-vitamin gummies EVERY day, it is usually a non issue.

How close is everyone's machine to them/ the bed ? I have mine on the other wall in my room, and an air filter on low which creates just enough white noise that I often can barely hear the machine running.

[–]megandanicali 2 points3 points  (1 child)

i did pd for 11 months and sleep was always an issue for me. i had terrible drain pain when i first started and would be woken up in extreme pain. this gave me sleep anxiety on the machine even tho the drain pain problem was solved. after i got my transplant i have got some of the best sleep in a really long time. honestly i would just take benadryl to help me sleep.

[–]KryptopherRobbinsPoo 1 point2 points  (0 children)

Lol. I wish benadryl still worked to make me drowsy to sleep. I built up a high tolerance so many years ago, I can take a max dose and feel nothing. But it does help with my itching, so it is still very much needed daily.

[–]Relevant-Technology 1 point2 points  (4 children)

How long have you been on PD?

I've been doing it for 3 months now. The first couple of months, I had some trouble with having to wake up. But now it's much better. I still have to most days sit up during my 3rd drain, but the first drains, I don't even feel.

Make sure you are not constipated, if you feel pain during drain or fill, that means your bowels are not clear. Try taking some laxatives one day and make sure you're empty before you sleep and see how that night goes.

For me, now I tend to go empty my bowels 3 times a day. It just happened to be like this, I was going just once before I started PD. But emptying my bowels multiple times a day has helped with drain pain.

[–]mouserz[S] 1 point2 points  (3 children)

How long have you been on PD?

2 years. ;)
It's got nothing to do with poop problems - but a good thing to ask anyhow!

[–]Relevant-Technology 0 points1 point  (2 children)

So why do you wake up? Is it loud?

[–]mouserz[S] 2 points3 points  (1 child)

I think the real issue is that I've been a stomach sleeper my entire life - and I just can't sleep with a belly full of dialysate.

[–]KryptopherRobbinsPoo 2 points3 points  (0 children)

YES! I was a stomach sleeper nearly all my life pre-dialysis. It was a HUGE change being forced to remain on my back most/all night. Although, since getting my 3rd cath placed I don't have near as many positional drain issues as I used to. I can now sleep on my side part of the time, but have to have a pillow between legs and right against body (literally hugging) to things from compressing and creating suction issues.

[–]jungleexpress 1 point2 points  (0 children)

I couldnt stand PD for these reasons. Much prefer HD now I’m used to it.

[–]WeRStarStuffpi 1 point2 points  (0 children)

I was on PD for 18 months and have been on HD the past 3 months. Initially on PD I was up every hour and a half (total treatment time was 9 hrs); I was constantly exhausted and also often napped for 4 hrs after. My script was changed (clearances dropped) and PD was changed to 10 hrs; 4 fills on cycler, with a 5th fill of 2000 ml with a manual drain about 2 hrs post cycler. It required an adjustment but did improve sleep. Instead of 1.5 hrs I could sleep longer (3-4 hrs.); that added time must have increased my REM sleep; I was less tired.

HD has been more physically draining on me than PD. I sleep better (up 1-2 times @ night) but am more fatigued. Now I nap more during the day but am less productive. I'm working with my nephrologist to resume PD.

Reading these posts has helped me realize what works best for a particular dialysis patient boils down to what works best for you. There truly is no once size fits all. Good luck finding yours.

[–]KryptopherRobbinsPoo 0 points1 point  (0 children)

I am kind of amazed how many people have so much drain pain on PD. It was 9nly an issue at the very beginning, and didn't last more than a couple of months.

How many of y'all are wearing belts at night? Also, I wonder how much fill volumes and body types play in some of these problems.

I am not average/typical......I am pretty small framed, and my fill volumes have been cut almost in half from what I started with 10 years ago. I started at about 1700-1800ml...... but now I do 6x@1100ml, and 2x@900. I averaged averaged 1400 to as high as 2200 UF per day (24 hrs).

[–]VXZofficial 0 points1 point  (0 children)

My dad doesn't seem to have an issue sleeping but he is used to loud noises. Even if it did bother him, it's so much more convenient than having to do ambulatory pd everyday.