Emory started in-center nocturnal last night

[noahvale]

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[greg10]

Congratulations.  So, do you have a bowling team?    ... that is something Zach would ask, but I don't think he is in Atlanta.

I have always wondered if a non-profit center would be more likely to operate a nocturnal program than a for-profit corporation.  I hope you'll have a great success with your program and that more HD patients learn about adequacy of dialysis and that some if not all of them can benefit from a program such as this.

[Rerun]

Great, sounds like it was a good first night.  We start people coming on at 6:30pm and stagger them .  All are on by 8:30pm.  Then they starting taking off at 2:30 or 3:00.  So we all get 8 hours.  I like Sunday, Tue, Thurs because I basically get Fri and Saturday and most of Sunday off.  It is a good 3 day weekend.

We dim the lights.  That helps us sleep.  If you don't have a TV get a protable DVD player and subscribe to Netflix.  It gives you a movie to look forward to and I usually fall asleep. 

We have 10 patients max.  We get one Tech and one RN for 10 people.  The biotech is called in if there are problems.  He hates that.

You will feel better soon.

[willowtreewren]

Great news! Hopefully you will sleep soon! 

Aleta

[noahvale]

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[noahvale]

^^

[lawphi]

tell the clinic manager what you want and need for nocturnal.  He is extremely excited about NxStage.

[BigRed]

noah,

i, too, signed up for the nocturnal program. i start this sunday. i have to admit, that as a light sleeper, i am very anxious about being able to sleep at all while on the machine. additionally, i dont usually go to bed until nearly midnight anyway, so i'm still going to get my 4 hours awake, on the machine...oh well. but i am beyond thrilled at the possibility of earning back my daytime hours and my weekends. it has the possibility of being a huge boost to my work situation as well as allowing me to get back into much of my volunteer efforts. i suppose i'll see you there, on sunday. while i expect the nocturnal folks to be younger, on the whole, i'll be the 28 year taking things very slowly. i'm still only about 8 weeks into this whole experience, so it all feels like its coming at once. ive even had my fistula surgery, and am working that squeeze ball as requested. 

ah well. glad to hear you were happy with the first experience...and i hope thats continued through this past week.

[noahvale]

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[BigRed]

I was told that they'd call me today to tell me when to come in-but i'm hoping its as late as can be. Half of the reason to be trying this is to open up my schedule a bit...coming in at 7pm doesnt help that too much. As for run time, Im still in week 8 dialysis and was put on in an emergency...so i still run 4hours, typically. So I assume I'll be running 8hrs at night. But they rarely have to take more than 1.2L off of me and I was told that after a while of that, they would start to shorten my time a bit?

Also...so if you get on the machine at 8:30 and run for say 7 hours...what do you do at 3:30am when youre finished? do you go home in the middle of the night, do you sleep until 5 and get off just in time to clean the machines for the next shift?

Obviously, there are still a lot of questions for me - but I learn best by experience, so we'll see.

Thanks!

[noahvale]

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[BigRed]

I appreciate all your input...i feel like i know a lot more of what to expect now.
As well as how to approach any potential issues. I have found, so far, that all of the staff
have been very responsive to what i had to say, every time.

I dont know my GFR pre-dialysis. Before my kidneys suddenly went south, we were paying much more attention to
my cardio vascular function, as I had had a heart attack a year prior. I do remember my creatnine was 13.7.

I expect I'll be up for most of the run, for the first week or two. Hope it settles in for us both, soon.
See ya, tomorrow...thanks again!

-Daniel

[BigRed]

Frank,

I meant to call today and ask what I needed to bring to be prepared for nocturnal, tomorrow night.
But its been a very busy day at work today (one of the things I hope to alleviate with nocturnal)
and I completely forgot. Typically, I dont need a blanket, come dressed in regular clothes and just grab
a single nepro (just in case). 

How does one prepare for nocturnal? Do I need the blanket, or a pillow? If we get there at 8:30, go on at 9-9:30...
at what point do lights go out? and how dark does it get...for those of us who may need to occupy ourselves for
8 hours? Thanks again!

-Daniel

[noahvale]

^^

[BigRed]

So my first night of Nocturnal was a huge bust. I ended up in a seat not only not near anyone, but directly next to the few lights the nurses keep on.  Dont get me wrong, my experience with the staff at the Emory Northside clinic is still stellar, and the other night was no exception.

But the night started off with the news that my two week old fistula seems to have failed and will have to be attempted again.

Everything was fine and comfortable for the first four hours or so. But then I put the computer away and tried to sleep. Things went down hill quickly. I never got to sleep at all(tonight i'm bringing benedryl)...the lights were too bright for me (tonight I'm bringing a sleep mask), and the noise of the machines(which i expected to be a dull hum and actually help with sleep) gave me a severe headache which developed into migraine territory by 2am. (tonight i'm bringing earplugs and ambient music/sounds downloaded onto the ipod) Additionally, they had to draw off 4.2L because I had a bad weekend of fluids...and Ive never taken off more than 2.4L in the past.  So even over 8 hrs, that was a bit hard to take.

Tonight should be different. Hopefully they wont need to take off more than 1.4L, I'll have some additional tools to help with the environment, and I know what to expect. I really want this to work out...it could mean the difference between full time salary and living with the support of my aging parents. It would certainly mean the difference between 1/4 time political work and being able to get back, almost fully, into the swing of things. Which is a huge happiness issue, for me.

The clinic has been reasonable enough and have asked me come in at 8pm and run until 4am-ish each time. I can live with that. The egg crate 'mattresses' over the chairs are not ideal...but they are surprisingly comfortable chairs to begin with...that said, 8 hours in any one position is going to leave a person a little sore. Anyone got any suggestions on how to fix that?

I didnt get a chance to really speak with him, but I did meet noahvale and he's a nice guy, if that wasnt demonstrated enough here. I look forward to getting to know my fellow nocturnal folks a bit more, too. I get a lot of staff attention, i think, because I'm so young and relatively talkative..but its hard to tell, again the staff have been very attentive at our clinic.

All in all, I had a horrible experience on Sunday night. Migraines, nausea, zero sleep. BUT, that was just getting over the initial hump. I'll have some new tools to help out tonight...we'll take less off, it'll be an easier run...hopefully I can replace migraines with 4ish hours of sleep. I look forward to reaping the benefits of nocturnal dialysis...enough to put up with the last discomfort a few more times. If things dont get better at all, within two weeks or so, thats about my limit and I'm out. We'll see.

Thanks again to noahvale, who helped me prep and get rid of a bit of apprehension about the change. Its always great to have a friend and this board has been a terrific resource on this journey, so far.

-Daniel

[noahvale]

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[greg10]

So my first night of Nocturnal was a huge bust. I ended up in a seat not only not near aAdditionally, they had to draw off 4.2L because I had a bad weekend of fluids...and Ive never taken off more than 2.4L in the past.  So even over 8 hrs, that was a bit hard to take.

Tonight should be different. Hopefully they wont need to take off more than 1.4L,
-Daniel

Sorry to hear about your first night.  This is just poor fluid management, and not totally on your part.  If they knew that you would be doing nocturnal dialysis consecutively, there would be no need to do a 4.2L and then a 1.4L.  Get into a routine of fluid management and don't be pressured into hitting your dry weight exactly if you have the luxury of longer dialysis time.  After all, dry weight is only a fuzzy target and the scales can be off at times depending on the humidity and temperature and clothing.

[noahvale]

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[buffalogal855]

Good luck to you. I hope nocturnal dialysis will work for you.

[greg10]

I am sorry to say I didn't say consecutive nights, I wrote consecutively, which means there was another long nocturnal session coming up.  From my perspective and given what I read of Big Red's history of heart condition, I don't think he should be pulling fluid aggressively even if he is a big young fellow starting on nocturnal.  I also stand by my characterization of dry weight as "fuzzy target" and in-clinic weighing as inaccurate.  Unless Big Red is stripping down to his shorts to weigh every time, there is a good chance just by the differences in clothing and humidity, that there will be an inaccuracy of 1 kg for a large person.

He does not dialyze consecutive nights.  As I stated in the opening post of this thread, our clinic's nocturnal program is Su-Tu-Th.  As for your comment about dry weight being a "fuzzy target,"..

Sorry to hear about your first night.  This is just poor fluid management, and not totally on your part.  If they knew that you would be doing nocturnal dialysis consecutively, there would be no need to do a 4.2L and then a 1.4L.  Get into a routine of fluid management and don't be pressured into hitting your dry weight exactly if you have the luxury of longer dialysis time.  After all, dry weight is only a fuzzy target and the scales can be off at times depending on the humidity and temperature and clothing.

[Bruno]

Greg is spot on with his advice. Nocturnal means a lot more than dialysing at night so that you have your days free. In my view 3 x 8 hour sessions weekly still equal 24 hours of dialysis and whilst you might have free days and weekends on, you are still open to the problems Greg is outlining.
Nocturnal means at the least, 4 sessions weekly of 8 hours...that's the whole point...not only convenience but the better outcomes that only come with more hours and less gaps between sessions.

[noahvale]

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[noahvale]

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[rsudock]

Noahvale,
 Your journey into nocternal dialysis is very exciting to read!! I too have been doing incenter dialysis in thinking about switching to nocternal if my living donor doesn't work out. Not to get personal but has your urine output changed since switching to nocternal? Since I have been on incenter D my urine output has been virtually none. I am hoping that if I switch to nocternal that it may increase...have you notice anything similar?

thanks

xo,
R

[Zach]

Greg is spot on with his advice. Nocturnal means a lot more than dialysing at night so that you have your days free. In my view 3 x 8 hour sessions weekly still equal 24 hours of dialysis and whilst you might have free days and weekends on, you are still open to the problems Greg is outlining.
Nocturnal means at the least, 4 sessions weekly of 8 hours...that's the whole point...not only convenience but the better outcomes that only come with more hours and less gaps between sessions.

Please read up on the Tassin experience.