starting Extended with Nxstage

[boswife]

it's so great to hear!!  so inspiring and something to think about... Hubby not interested at all,,but i keep telling him neat stories so we'll see.  we're retired so 'time' is not as tight as some, but the longer treatments while sleeping...hey, sounds good to me    I do tease him that we're already doing nocturnal though cause he gets up at 3 each morn (just cause thats his habbit) and now is starting the machine to the 23 so it has time to 'brew' for me when i get up about 4 30 and we do our 3 hours then, so by 830, we're all done, cleand up and ready for the day.  Hubby VERY energetic with this routien, and i usually need a nap..lol

[rocker]

Sooooooooooooooooo jealous....

Our facility director, who told me she thought she could get a nocturnal program going - well, she went to the area director, and said he was open to it, and they were making progress....then he quit.

So her latest word is "maybe second quarter".

I really am about to just buy a syringe pump on ebay....

Do you use a moisture sensor?  Which one?

Oh, and I wouldn't screw with the 21 too much.....as that's the alarm you'd get if your venous disconnected.

  - rocker

[tyefly]

Well everything has been going very well.  I have learned that 270BF is too slow...I seem to get 21alarms many times in the night....   So  I have raised it to 300BF and my pressures are alittle higher and seem to work better with the parameters of alarm 21..... No more alarms....  complete sleep all night.... 

I feel better than I did before..... I dont feel sick at all.... its amazing... my labs have been very good... phos is coming down but still in the normal range....

I am concentrating on eating a big breakfast with lots of protein....  that was I can use all that protein all day long.... I feel like do so much more...  I am back to my old self.... busy   busy   busy... loving life....
   

[boswife]

So good to hear tye. It makes me so happy when something someone wants so bad, works out so well.      I was kind of laughing at hubby today (who doesnt want to do the nocturnal/extended route) telling him, heck, "your already doing nocturnal" as he gets up at 3am to get machine started,I get  snap and tap goen by  4 and off we go IN THE DARK and then he goes back to sleep while i get other stuff all done so that by when he's all done, we have our day  from 830 on.  So is that nocturnal for him..lol  Anyway, life is good, im glad it's working for you..

[Bill Peckham]

There is a setting for the 21 alarms. But you should be able to stop them if you go up and down on the blood pump speed so that the machine goes in to the Yellow 8 mode. During the Yellow 8 the cycler is establishing a baseline venous reading around which it sets the +/- range.

The 21s should stop if you can get the machine back in to the Yellow 8 mode and then get comfortable, fully reclined. This way the baseline will be closer to what your pressure will be at rest. You can get to the Yellow 8 by changing the blood pump, just increase and then decrease. All that said some nights the only thing that works is increasing the speed and leaving it there. My guess is that the range is based on percent decline/increase so the problem with low speeds is the nominal change required to trigger an alarm is pretty minimal. Your unit should consider having you adjust the venous pressure alarm setting, to widen the range.

In general a 270 pump speed v 300 isn't going to make a whole lot of difference - a higher FF or a longer run, or a combination of the two - but the 21 alarm shouldn't be the determining factor.

[yliebert]

My hubbie is starting nocturnal tomorrow night. How do you keep your needles in tight while you sleep and what do you use for leak detection?

[Bill Peckham]

My hubbie is starting nocturnal tomorrow night. How do you keep your needles in tight while you sleep and what do you use for leak detection?

Here's how I tape
http://video.google.com/videoplay?docid=7996438588639581287#

[okarol]

My hubbie is starting nocturnal tomorrow night. How do you keep your needles in tight while you sleep and what do you use for leak detection?

Here's how I tape
http://video.google.com/videoplay?docid=7996438588639581287#

Interesting Bill. Did you ever get a working moisture alarm?

[yliebert]

Thanks Bill.
Yoletta

[yliebert]

Bill,
My hubbie is thinking of buying the same leak alarm that you use on the video.  Does it work?
Yoletta

[MooseMom]

Hey tyefly, I was just hoping for a new update.  How is everything going?  Are you still happy with nocturnal/extended/whichever term you wish on NxStage?  This is the modality I eventually want to use, so what are the things you'd most like to tell someone who is thinking about nocturnal home hemo with NxStage?  Thanks!