I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: tyefly on March 09, 2011, 04:36:52 PM
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I am starting Extended with Nxstage this coming Monday..... I have been working on this for better than 8 months..... its been a long haul.... alot of challenges..... alot of this and that....
I am looking forward to sleeping dialysis away.....
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I hope it is what you are expecting and makes your life a little easier and your body a lot healthier. Good luck!
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Hope you do very well. Do you have any additional support from your clinic for doing extended home HD? such as training and monitoring? I think I read that you have received the heparin pump and training on that.
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That is outstanding!!! I want to hear all about it once you're up and running (or down and sleeping..)
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Are you going to use a bed or chair? Personally I've found the chair to work well but I know most people use a bed.
Don't be surprised if you don't sleep that well the first night - try not to nap even if you didn't sleep well at all (easier said then done) and hopefully you'll be tired enough to sleep the next night. It'll take some getting use to. I found that having music or a podcast helps me fall a sleep, but TV keeps me up. I also take something once I'm on if I'm having trouble falling asleep.
Think about what to do during the day so that you fall asleep without a lot of starting at the ceiling - watch out for caffeine, no naps, etc.
For me it's made it much easier to feel well and have time to do the things I want to do.
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Im really happy for you as i know how much you've been wanting this. Seems those who do it LOVE it and feel wonderful and im sure you'll be right with them. Looking forward to hearing how you do... :2thumbsup;
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I have a bed and a chair to choose....My machine is in between them.... I am sure I will spend more time in bed..... chair is ok but it doesnt lay flat.... as far as sleeping while hooked up.... I am not worried.... Like Bill said... just stay busy all day doing what needs to be done and then get tired and then go to bed.... hooked up... I am so excited... I will not have to do dialysis during the day .... what will I do with all my time.... I think I will get my life back.... Fishing , gardening, hiking ( even if its day trips ) , Dog walking, shopping, more gardening, oh I do run a business from my home...guess I can still do that .... LOL. choices choices......
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This is really, really good news! :2thumbsup;
And now you may have paved the way for others in your area.
:clap; :clap; :clap;
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No wonder your depression is lifting!! You've got choices, and you've got your life back. I want to hear EVERYTHING about your venture into extended D because that's my plan, too! I can't wait to learn everything there is to know from you!
PS...I found the perfect dialysis chair. It's only $1200! :o :o :o I think it sings, dances and makes money!
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No wonder your depression is lifting!! You've got choices, and you've got your life back. I want to hear EVERYTHING about your venture into extended D because that's my plan, too! I can't wait to learn everything there is to know from you!
PS...I found the perfect dialysis chair. It's only $1200! :o :o :o I think it sings, dances and makes money!
MM you should not have to buy a chair.... they ( the clinic is suppose to give you a chair...
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UPDATE.... I have started nocturnal.... last night was my first night.... I wanted to start a few days ago but the pump that they gave me,,, no one new how to use it ...so I took it home and read the instructions and did a few practice runs... anyway..
I did NOT sleep very much last night.... I kept waking up every few minutes or so... went on the machine at 10 pm still up at 1am and they I looked at the clock at 2:30 and then at 3:30 my pump had alarms.... so up I went and the pump said that the line was occluded.... I looked at the line... and nothing was wrong... so I added 2ml of heparin to the line and back to bed I went..... they I slept for a hour or so and up again ... I waited till I finished my run.. 8 hour run....
I hope tonight the heparin pump runs with no problem...... I dont want any alarms... The question I have is how do we get past the #5 alarm.... I dont want to walk up and have to turn that off.... any ideas.....
I am running BS 260 with a FF of 28 for 8 hrs... machine is very quite with that speed...
well hopefully tonight will be a breeze....
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There is a machine setting for the #5 and there is one to turn down the brightness of the display.
I've had nights where I didn't sleep that well and I know when I made the switch I went back to bed after the first two runs - which was probably a mistake in retrospect - it'll get better. If you're exhausted better to get on early than to nap.
How did the kidney look after the run? What do you think caused your alarms? I wasn't sure from your post if you couldn't sleep from the start because of alarms or if you couldn't sleep and then late in the run had alarms to boot.
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I didnt sleep well from the beginning.... it was like starting a new job or getting ready for a big vacation.... guess I was excited....LOL I am not sure why the heparin pump stop working 4 hours into it... it a Baxter AS50 ( hope that wasnt the recalled one....) the pump said the line was occluded..... ???? anyway.... I shot 2 ml of heparin into the filter.... no more problems.... my fliter looked great... no streaking ... just a little clot in the front... which I believe is normal.... tonight I am giving it another shot..... I bet I sleep better tonight....
good to know how to do the machine settings... I had to change the FF down from 33 to 28... pretty easy for the most part..
Even though I have only ran one night....its sure nice to get up and get on with my life....and not have to do another 4 hours of dialysis.... I could get spoiled doing nocturnal.....
My center wants me to document everything that I am doing and then they will write up a protocol.... as there are a few others in the clinic that want to go extended too.... I love it..... Change is good....
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My center wants me to document everything that I am doing and then they will write up a protocol.... as there are a few others in the clinic that want to go extended too.... I love it..... Change is good....
1. Join IHD
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.the heparin pump stop working 4 hours into it... it a Baxter AS50 ( hope that wasnt the recalled one....) the pump said the line was occluded..... ???? .
I am not familiar with the AS50, but there was an Urgent Device Letter (UDL) from 2005 that talked about the occlusion pressure setting:
http://www.baxter.com/downloads/information/safety_information/AS50%20-%20Check%20Flange.pdf
Perhaps they made the default setting more sensitive to occlusion after the UDL and other complaints of occlusion problems that the alarm wasn't sensitive enough. There is apparently a selectable 'low occlusion pressure setting'.
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Great news tyefly! Good luck with it all. :cuddle;
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Wonderful news and I hope that each day you have better and better results! :2thumbsup;
Aleta
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A successfull night at nocturnal..... I slept well and had my whole day today to do everything but Dialysis.... What will I do with all this time.....
My clinic and I decided that I would do dialysis six nights a week (48 hours per week )for 30 days and then drop to 5 nights. (40 hours per week ) and then maybe ( probably ) down to 4 nights a week....
That will be 32 hours of dialysis per week and that is still more than what I was doing six days a week ( 27 hrs per week ) before I started nocturnal... this is going to work out great..... only one thing that I can say that would be better ... would be a transplant...... which will come in time..... thats my next goal....
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:clap; :clap; :clap; :clap; :clap;
This is great to read!
Made my day!
:2thumbsup;
Aleta
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Oh, this is just fantabulistic! I am so stoked because what you are doing is exactly what I am hoping to do! I am so excited for you!!!!!
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Fantastic.
One option to consider is the 2 day on 1 day off schedule. It ends up being equal to 4.66 days a week; one week in three you end up dialyzing four times, two weeks in three you dialyze five times. I do this and mix in three days in a row (or more (sometimes less)) depending on travel/work/life.
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Im ready for todays update :-)
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Todays Update.... I dialysized from 10pm to 6 am with no problems.... I didnt have to listen to alarm # 5 (because I turn it off and it doesnt work anymore.) but I still had alarm 21 only a few times.... I would like to get rid of that too... This alarm goes off if your pressures change and sometime when I change positions in bed I see that it goes off.... Your pressures go up and down depending on what your doing ...like the difference between laying down , sitting up or standing up. ..So Alarm 21 just tells you that pressures are changing....anyway..
I slept very well and was only awake a few times last night.... it kind of reminds me of when I use to sleep with my daughter when she was born..( 25 years ago) I would hold so still and listen in my sleep.....if she moved I was awake... I slept with her for a few years and then she go her own bed...LOL she was my last baby....LOL
I am going to like this way more than sitting in the chair and doing dialysis after I have already slept.... I think I will get more active now..... its been hard for me to sit for any length of time... I am one of those who never sits down..I hate movies cause I cant sit there that long....
and just think Summer is right around the corner.... life is good.... I wish more people could do what I am doing...
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This story just gets better and better!!!
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This is fantastic! :2thumbsup;
We used to get those #21s after I had fixed a high pressure problem. Like, yeah, I know the pressure is dropping, duh, because I WANT it to drop!
I would call tech support and see if there is a way to make the sensor less sensitive....
Keep up the great reports! :yahoo;
Aleta
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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
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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
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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....
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So good to hear tye. It makes me so happy when something someone wants so bad, works out so well. :2thumbsup; 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..
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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.
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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?
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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# (http://video.google.com/videoplay?docid=7996438588639581287#)
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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# (http://video.google.com/videoplay?docid=7996438588639581287#)
Interesting Bill. Did you ever get a working moisture alarm?
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Thanks Bill.
Yoletta
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Bill,
My hubbie is thinking of buying the same leak alarm that you use on the video. Does it work?
Yoletta
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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!