I need lots of sleep

[MooseMom]

After deciding that short daily home hemo/NxStage is for me, I've now started thinking seriously about doing home nocturnal.  I haven't researched it a great deal, but I do know that it seems to be the best treatment other than a transplant.  I am in pretty good shape and think I can do it.  So I am just beginning to compile a list of question, most of which I know I can find the answers to on many of the really good forums on the subject (ie Dr. Agar's forum in Australia).

I know that running time will be determined by my neph, but let's say that I run 7-8 hour per night for, say, five nights (I'm just making up those numbers; I know they'll be different).  Well, I need nine hours of sleep.  My sleeping pattern will have to change dramatically if I am going to have my husband assist me in getting off the machine before he heads for work, and I really don't like the idea of getting up at stupid o'clock every morning.  Do most of you just go back to bed after getting off?  If I sleep only 7 hrs a night, I am not fun to live with.  If your spouse/caregiver works, how do you manage in the mornings?  Or do you just get yourself off?  Do you have to wake up just to get yourself off the machine, or can you sleep longer and do nothing with the machine until you're ready to wake up and start the day?

Such questions keep me up laaaate at night, as you see.

[Desert Dancer]

Hi, MooseMom -

I'm just like you; I need nine or ten hours of sleep to feel rested (but I'm lucky to get seven or eight). I don't usually go back to sleep after I come off, but it's entirely possible.

During the week Andy works and has to leave the house by 6:20 in the morning. We try to make sure we're up and running the night before around 9:30 so I will end at 5:30. His alarm goes off at 5:15 and he wakes me up to do all the little things: temperature, sitting blood pressure, etc. By the time I'm done with those, dialysis has finished. We return my blood, administer EPO and flush the lines; then Andy untapes me, I pull the needles and wait for the bleeding to stop, then Andy tapes gauze over the buttonholes and we're good to go. The whole process - from blood return to taping - takes about 15 minutes.  I could definitely go back to sleep at this point - if I weren't an anal retentive clean freak. I also tend to be AWAKE once I'm up and I hit the ground running, despite not being a morning person AT ALL.

Now, on the weekends (a Friday or Saturday night, when Andy doesn't have to be to work the next day) once the alarm tells me dialysis is completed, I have been known to roll over, hit the reset button and turn off the ultrafiltration. As long as I've got enough bicarb in the jug, I might go back to sleep for another hour (which means an additional hour of dialysis). I'm not comfortable going much beyond that, as my heparin prescription is for eight hours and I don't want to chance my blood clotting up in the lines. So far, I've had no problems going back to sleep.

I'm so glad you're thinking about nocturnal; I noticed an almost immediate difference in how I felt switching from short daily to nocturnal. I hope I don't ever have to go back to short daily.

[Jean]

Seriously, I was of the opinion that once you are on D, you feel better and hopefully can live with a normal amount of sleep. KitKatz is the best one to answer this quesition. She does nocturnal in center Hemo. Then she goes to work all day. Sometimes I think she sneaks a short nap in the evening I think. Right now, like so many others, I sometimes sleep 12 hours straight.

[MooseMom]

Ooooh, lots of really good info!  Thanks so much!!  I guess everyone has to find their own rhythm, but I still like to have some sort of idea of what other people experience.

My clinic doesn't offer incenter nocturnal, and while they support home hemo with NxStage, I'm not sure they support nocturnal home hemo no matter what the machine.  I'm at the very early stages of thinking in this regard.  It didn't really occur to me to think "nocturnal" until early this AM, so I still need to find out from my neph what exactly my options are.  Our local hospital is merging with a larger one, and I have asked if that might give our community more dialysis options, but no one seems to know.

[Bruno]

Moosemum, I'm like you...between the river and the deep blue sea. I'm on home dialysis during the day but I've had the dialyser installed in my bedroom so that I can eventually go nocturnal. I've only been home for 6 weeks and I can see I need a little more time to become entirely familiar with everything before I go nocturnal...I would not have said that a month ago, but looking back on my first few weeks alone It would have been mad to go too early.
I have absolutely no doubt that if you want to live a long and useful life on dialysis, it should be frequent...at least 4 out of every 7 days...you should not have a 2 day break...and sessions should be a minimum of 5 hours each. That means at least 20 hours of dialysis every 7 days.
On that schedule (as I am currently) you soon realise that doing it at night rather than by day is the best way to go.
However, I'm on a Fresenius machine and it's my guess that the NXstage machine (which is your option) is a better nocturnal machine than mine.
I also believe that if you are able to go nocturnal you can get as close as you are going to getting a full life back again.