I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: noahvale on April 25, 2011, 11:00:56 AM
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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.
(http://ihatedialysis.com/forum/index.php?action=dlattach;topic=22670.0;attach=18627)
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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.
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Great news! Hopefully you will sleep soon! :2thumbsup;
Aleta
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tell the clinic manager what you want and need for nocturnal. He is extremely excited about NxStage.
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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.
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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!
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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
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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
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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
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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.
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Good luck to you. I hope nocturnal dialysis will work for you.
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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.
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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.
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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
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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.
8)
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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.
8)
Zach should I google "Tassin experience"?
xo,
R
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http://www.wple.net/nefrologia/nef_numery-2006/a-nefro-4-2006/141-146-charra.pdf
Long 3 x 8 hr dialysis: the Tassin experience
A long hemodialysis (HD), typically 3 x 8 hours/week, has been used without
significant modification in Tassin since over 35 years with satisfactory morbidity
and mortality outcome. It can be performed during the day or overnight. The
longer patients' survival than usually achieved by the more conventional shorter
dialysis sessions is mainly due to a lower cardiovascular mortality. This in
turn is mainly due to the control of blood pressure including drug-free hypertension
control and low incidence of intradialytic hypotension. This blood pressure
control is probably the result of the tight extracellular volume normalization
(dry weight achievement), although one cannot exclude the effect of other
factors such as serum phosphorus control, well achieved using long dialysis.
The high dose of small and, even more, of middle molecules, is another essential
virtue of long dialysis, leading to good nutrition, correction of anemia, control
of serum phosphate and potassium with low doses of medications and providing
a very cost-effective treatment. In 2006 one must aim at an optimal rather
than just adequate dialysis. Optimal dialysis needs to correct as perfectly as
possible each and every abnormality due to renal failure. It can be achieved
using longer (or more frequent) sessions. Overnight dialysis is the most logical
way of implementing long HD with the lowest possible hindrance on patient's
life. (NEPHROL. DIAL. POL. 2006, 10, 141-146)
more on the pdf site.
8)
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I stopped peeing within a few months of going back on dialysis due to rejection. As a general rule, though, the type of kidney disease is usually the determining factor in diminishing urine output once starting dialysis. However, patients on manual peritoneal dialysis usually continue peeing for a longer time. Probably has to do with the body doing the cleansing "naturally" through the peritoneum as opposed to having a machine (either hemo or PD cycler) doing the work. If anything, more hemodialysis would work against increasing urine output (kidneys get "lazy" and let the machine do the work) so that shouldn't be a consideration for you going to nocturnal.
Noahvale,
Your journey into nocturnal dialysis is very exciting to read!! I too have been doing incenter dialysis in thinking about switching to nocturnal 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
thanks for the quick response! I am just getting tired of the constant urge to pee all the time. If that would stop I think I may not mind dialysis so much. Maybe I need to have the non working transplanted kidney taken out?
xo,
R
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thanks for the quick response! I am just getting tired of the constant urge to pee all the time. If that would stop I think I may not mind dialysis so much. Maybe I need to have the non working transplanted kidney taken out?
xo,
R
Notice you have PKD. Were your native kidneys removed before your first transplant? Was cyst formation the reason for function loss of your transplant?
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thanks for the quick response! I am just getting tired of the constant urge to pee all the time. If that would stop I think I may not mind dialysis so much. Maybe I need to have the non working transplanted kidney taken out?
xo,
R
Notice you have PKD. Were your native kidneys removed before your first transplant? Was cyst formation the reason for function loss of your transplant?
I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.
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I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.
Noticed on a different board that your transplant date has been set. Congratulations!
I asked the question about the cysts to see if you were going to have a nephrectomy so they don't leech onto the new kidney. Is it the type of PKD you have or preference of your transplant center to leave the first transplant in? Always thought cysts in PKD made the kidneys so huge and painful as well.
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I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.
Noticed on a different board that your transplant date has been set. Congratulations!
I asked the question about the cysts to see if you were going to have a nephrectomy so they don't leech onto the new kidney. Is it the type of PKD you have or preference of your transplant center to leave the first transplant in? Always thought cysts in PKD made the kidneys so huge and painful as well.
thanks for the well wishes Pat!
I am not going to have a nephrectomy b/c my native kidneys are not huge ....yet. I don't have the dominant PKD so that maybe why mine aren't huge. (someone correct me if I am wrong. I have tried to look up the data but no luck) The transplant center wants to keep the first transplant in if it is not causing any problems. Guess it is a simpler surgery to put the kidney in a new place. Also it is easier for the patient as well. Less time under anesthesia.
I didn't know the cysts could leech onto the new kidney....weird!? Learn something new everyday.
xo,
R
ps-Noah so glad the program is going so well and you are happy! Sorry to hijack your post!
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I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.
Noticed on a different board that your transplant date has been set. Congratulations!
I asked the question about the cysts to see if you were going to have a nephrectomy so they don't leech onto the new kidney. Is it the type of PKD you have or preference of your transplant center to leave the first transplant in? Always thought cysts in PKD made the kidneys so huge and painful as well.
thanks for the well wishes Pat!
I am not going to have a nephrectomy b/c my native kidneys are not huge ....yet. I don't have the dominant PKD so that maybe why mine aren't huge. (someone correct me if I am wrong. I have tried to look up the data but no luck) The transplant center wants to keep the first transplant in if it is not causing any problems. Guess it is a simpler surgery to put the kidney in a new place. Also it is easier for the patient as well. Less time under anesthesia.
I didn't know the cysts could leech onto the new kidney....weird!? Learn something new everyday.
xo,
R
ps-Noah so glad the program is going so well and you are happy! Sorry to hijack your post!
talked to the doc....autosomal recessive PKD the kidneys do not get huge (good news) but, the liver tends to have more problems. (bad news)
the cysts on the kidneys don't typical leech onto new kidneys b/c the cysts grow b/c their is a genetic abnormality within the kidney. When you transplant a new kidney that kidney is good to go b/c the genetic mutation would not exist in the new kidney.
Just wanted to clear up the info!
xo,
R