dialysis : sleep

[mcclane]

I apologize if this has been discussed before.

Since starting home nocturnal hemo (training in april, machine hooked up in home in may), I've noticed my the hours of my sleep has severely decreased.  If I had to guess, I would say I average 4 - 4.5 hours a night.  At this point, I'm virtually running on fumes.  I'm like one of Romero's zombies, and everything is pretty much in a haze from lack of sleep.  This doesn't help as I have to be focused at work too, and if there is a meeting, I'm hooped, as I barely make it past the first 10 min before I start dozing off.  Too bad I can't take a siesta at work 

At first the noise of the machine kept me up all night.  But I eventually got used to the clicking, gurgling, and other weird noises the machine makes.  But what still gets me is the noise of the alarm.  If it isn't a min/max pv/pa alarm, it is a concentrate error alarm, or an air detected alarm.  Because the alarm is extremely loud, it literally jolts you from your bed.  Once that happens, getting back to sleep is next to impossible.

What i've done as a workaround is on the weekends, I would only do a 2-3 hour run.  That way i can at least sleep in abit.  On the other hand, this severely limits what my wife and I can do on the weekend, because I would usually do the run in the afternoon.  I've also found that on the weekends, I wind up taking naps (while I'm doing the run). This totally sucks, because at this point, I'm lacking sleep, plus I've not done anything fun for myself since starting hemo.

I'm convinced that there is really a no win situation.  If I do it at night, that would free up our weekends abit, but then I run into the same deal of no sleep.  If I do the run in the afternoons, we don't get to do anything else but I do get to sleep in abit that night.  I'm tempted to take fridays off from work just so i can dialyze at the unit, but I can only take so many sick days from work.  I've thought about doing 3 hour runs after dinner (crank up the dialysate flow to 500 or 800, maybe increase pump speed to 350 or so), but I get off work at 4:30, by the time I get home (traffic ...) it is 5:15, prepare dinner, shower, we're looking at 7 pm.  Start setting up the machine, now i'm looking at 7:45 - 8 pm before I even start dialysis.  In that case, I wind up rushing thru dinner, spending zero time with my wife, and not getting to bed until past midnight (3 hour run would have me end at 11 pm, but there is the strip down of the machine, and gathering of the supplies for the next day's run).  So I'm not in any better position doing it that way either.

If anyone has any ideas, that would be awesome.

[jeannea]

I vote for the siesta at work.

[tyefly]

I set the machine so that I would not get a alarm 5...dont need to know when the fluid is done....  I didnt get many alarms...but I did set the machine so that the 21 alarm had wider parameters..... I think the center can do this for you if you dont know how....but its in the back of the book under system setting...  but talk to you clinic about helping with the alarms....  remember  slow dialysis is better dialysis... faster speeds are good on the fistula and on the phos and pot clearances....

[Wallyz]

I was on nocturnal Home hemo from may 08 to Dec 09, and the first 6 months were difficult with sleep, but it got better. It's difficult, but for me I had terrible insomnia from in center, so even when I wasn't getting solid sleep, it was better than other forms of dialysis for me in terms of being able to sleep.

[billybags]

I believe that not sleeping at night just goes with the territory, ask most people on here and they are all the same. I find my husband sleeps not to bad when his iron is OK but when it drops he is back to being awake all night again.We have tried every thing from drugs to music to radio and not much works. You just have to go with the flow. I would ask your neph, but we found the drugs make you dopey in a morning.

[mcclane]

I believe that not sleeping at night just goes with the territory, ask most people on here and they are all the same. I find my husband sleeps not to bad when his iron is OK but when it drops he is back to being awake all night again.We have tried every thing from drugs to music to radio and not much works. You just have to go with the flow. I would ask your neph, but we found the drugs make you dopey in a morning.

i'm trying to stay away from 'sleep aid' medication.  I agree, you wake up worst - groggy and it takes a while for things to kick in.

While far from perfect, what I find is sort of helping is doing long runs mon - thurs, and if i have time do a short run friday night (if not, i'll revert back to a long run).  On weekends, i just do a short run so i can sleep in the next day.

as mentioned before, the normal sounds the machine emits, i can get used to.  It is when an alarm sounds, i may was well not even try going back to sleep as it is next to impossible.

[Dannyboy]

McClane,
I have nothing useful to contribute on this thread as I am just starting NxStage training next week, I just wanted to say 'thank you' for mentioning the challenges you're facing, so others like me can learn/benefit.   I won't be going for nocturnal at first, but that is my long term goal.
---Dan

[mcclane]

Dannyboy,

Mind you, up here in canada nxstage is only a pipe dream for all of us. 

The hospital sent me home (or they came and setup) a Bellco Formula dialysis machine.  This thing is is tall, bulky (almost like a small tall fridge), and super heavy.

I've read about the nxstage and no additional plumbing/electrical circuits or plug ins are req'd (it runs off 120 volts (?), mine runs off 220).  I have water hoses running from downstairs to the upstairs spare bedroom.  From the sounds of it, nxstage machines doesn't sound anywhere as annoying as the one i have.  Not sure if the nxstage makes any machine noises though, but my Formula machine sure does (alarm on my Formula is like a the old ww2 bomb attack alarms, it is that loud).

here is the company's info on the machine I have :

http://www.bellco.net/en/default/00030008/equipment.aspx

(sorry about the small pic on the company's website)

I swear, if and when I ever get my transplant, I am taking this machine down to the shooting range and use it for target practice  I'll then ship the pieces back to the hospital 

[Dannyboy]

McClane,
Ahh, I mis-understood (or jumped to an incorrect conclusion) when you referred to doing nocturnal hemo, thought it was NxStage.   

Wow, that machine you have is similar to the one I use in-Center, yeah, a large thing with lots of "stuff" hanging off it.

As far as NxStage is concerned, I can't speak from experience ('cause I haven't started to use it yet), but local folks and folks on IHD all sing its praises (as I'm sure you are well aware).    If a person uses the 'Pureflow (R)' section with NxStage (optional....makes Dialysate bags), you need a water line (small tubing) and a place to put the drain water, but that is fairly minimal, yes as you say.

I didn't know NxStage was not available in Canada...I gotta believe the NxStage folks know they have potential customers waiting up there.   
--Dan

[mcclane]

Dannyboy,
After reading people's experience with nxstage on here, I am super jealous 

No need for an electrician to come to your home, no need for water purification tanks, no water hoses running thru the house.

I don't always use this machine as 'nocturnal', if i have the time, i do it during the day time so i can sleep at night without having tubes draped everywhere 

From what I've read on the web, the company that makes nxstage has tried to sell their products up here.  Health Canada has approved the machine itself for use, however, those dialysate bags have not been approved (go figure).  Like the PD bags, Health Canada treats it like a medication, and before it can be used those dialysate bags require a DIN (drug identification number).  So while I can get the machine, it'll do me no good without those bags.

[Dannyboy]

Hmmm.   Well sounds like they might be making progress towards being able to offer NxStage in Canada.    It is a curious thing how the different government agencies "look" at things differently. 

As far as nocturnal goes, do you find yourself pinching the lines inadvertently?   I usually roll around quite a bit and wonder about that.   

---Dan

[mcclane]

Hmmm.   Well sounds like they might be making progress towards being able to offer NxStage in Canada.    It is a curious thing how the different government agencies "look" at things differently. 

As far as nocturnal goes, do you find yourself pinching the lines inadvertently?   I usually roll around quite a bit and wonder about that.   

---Dan

on occasion i do roll over and pinch the tubes (mind you, i still have a central line.  not sure how this will work out when i move to the fistula).

That is when the machine screams like a banshee and i get a min/max pv alarm.  What I've found is that subconciously i make myself aware of where the tube is so i don't pinch it off.  That could be a reason why i don't sleep that well, as i'm always worried about sleeping on the tube.

[bleija]

I swear, if and when I ever get my transplant, I am taking this machine down to the shooting range and use it for target practice  I'll then ship the pieces back to the hospital 

if only, i think we all feel that way about our machines, but being off PD and doing in center hemo, i  have fallen back into a love hate relationship with my machine, i ahte it but its the better of 2 evils