I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: Simon Dog on April 12, 2015, 01:46:21 PM
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I will be transitioning to nocturnal once my MD gets some more approvals. That created a need for a lamp by the bed, which I really don;t have room for, so I installed a remote lightswitch to control the overhead light in the room. Works great, and I've tied the remote to the handle on my System so I can find it in the dark.
http://www.sears.com/liftmaster-823lm-remote-light-switch/p-SPM6817345607?prdNo=4&blockNo=4&blockType=G4
I've also had a device built that uses an optical sensor to trigger a relay controlling a 120VAC outlet so I can plug something loud in and be assured I won't sleep through any of the "red alarms" on the System 1. Once I start using it, I'll post photos of the setup (and a schematic if anyone wants to duplicate it)
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Congrats! Hope nocturnal works out for you. Smart thinking with tying the remote to the system. I was almost going to suggest some strong stick-on velcro but if you were to ever drop the remote, you'd have a better chance of fishing it up off the floor by a string than having to get up and reach over the bedside for it (with needles in you). That optical alarm sensor also sounds great. Something like that could probably help a lot of people. Are you sure you're not a geek? lol Very smart, I say!
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I wanted to run the alarm off the speaker on my PC, but NxStage was less than cooperative when I asked for documention on the IP protocol used to transmit data from the System 1.
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Please let us know when you go Nocturnal. Am really interested in knowing the ins/out and pros/cons of it and level of difficulty and comfort a Nocturnal hemo patient has. And most of all, the physical and medical outcome...better labs, feel better, etc, etc..Also, silly question but can you leave the air (a/c or heat) blow all nite or do you have to cover up the vent in your room? (I am thinking of while making blood-line connections). Dealing with cold winters would be one thing but heat and humidity on a hot summers nite would be another story. Doubt I could survive without a/c and a ceiling fan on. Good luck! Hope you sleep like an :angel;
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I am getting a little frustrated by the snailish pace at which my care team is progressing towards nocturnal. I've been advised the final hold-up is getting a REMF at corporate to approve the selection of the blood leak monitor.
As to A/C - when I did PD training, I was told to close all windows and shut off heat and A/C to keep down air circulation. I have not been advised to take any of those precautions with the hemo hookup (which aside from the heparin pump, will not be any different for nocturnal as for conventional home hemo I am donig now).
The flaw in the NxStage system is a high pitched alarm that is easy to some of us to sleep through.
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I am getting a little frustrated by the snailish pace at which my care team is progressing towards nocturnal. I've been advised the final hold-up is getting a REMF at corporate to approve the selection of the blood leak monitor.
As to A/C - when I did PD training, I was told to close all windows and shut off heat and A/C to keep down air circulation. I have not been advised to take any of those precautions with the hemo hookup (which aside from the heparin pump, will not be any different for nocturnal as for conventional home hemo I am donig now).
The flaw in the NxStage system is a high pitched alarm that is easy to some of us to sleep through.
I think we'd end up sleeping through an alarm from the cycler but the decibel on the Pureflow unit hurts if you're anywhere near it. Good luck with getting a blood leak monitor. Hopefully you will be in nocturnal bliss sooner than later.
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I have training on the heparin pump next week and the blood leak monitor if it's in by then - finally all approvals have been done.
I have my own alarm for the NxStage working. My wife tells me it wakes up the entire house, so I may need to add a volume control.
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When you said "volume control", a baby monitor came to mind. To help wake a sleeping carepartner (and not the whole house) if the carepartner happens to be sleeping in another room.
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When you said "volume control", a baby monitor came to mind. To help wake a sleeping carepartner (and not the whole house) if the carepartner happens to be sleeping in another room.
I'm thinking of a 100k potentiometer. My alarm triggered by the NxStage is one of these: http://www.homedepot.com/p/Heath-Zenith-Wired-Door-Chime-Buzzer-DW-170/202209269
Two closed doors and a hallway, and it will still wake the care partner.
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We had electrician put a pull cord above bed for the light - Alan has had 3 days dialysis at home and I think he needs a few days rest before talking maybe 4.5 hrs on Monday....nocturnal a few weeks off yet.
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The Fresenius clinic I use has a policy of 6 months home without nocturnal before nocturnal. I've been on NxStage for over year, and I would agreee that a decent amount of non-nocturnal time to get used to the machine; to make sure you have to deal with a few bad needle placement day; handle a diverse assortment of alarms; etc. is a good idea and will make nocturnal safer.