HI Folks
Rich I can’t answer any of your question on nocturnal.
But I want to go noctunal ,I’m om nxstage now. My reason for wanting nocturnal are for time . I’m very happy to home but now I want my day light time for work.
So if anybody is on noctunal please give us any and all information that you can? I’m looking into the time saving that I hope it gives to let me get on with day time jobs.
bobeleanor
Bobeleanor, I go along with everyone else. I love nocturnal and can’t see doing daily. You sleep through the treatment and the whole day is yours. Not to mention you are getting more and gentler dialysis.
Marty
[QUOTE=bobeleanor;11337]HI Folks
Rich I can’t answer any of your question on nocturnal.
But I want to go noctunal ,I’m om nxstage now. My reason for wanting nocturnal are for time . I’m very happy to home but now I want my day light time for work.
So if anybody is on noctunal please give us any and all information that you can? I’m looking into the time saving that I hope it gives to let me get on with day time jobs.
bobeleanor[/QUOTE]Hi and good morning from Canada…
Jessie is my 18 year old son and he starts dialysis on Saturday… we are actually happy that he’s starting… if that is at all possible to say ! We are definetly going to prepare him for nocturnal hemodialysis…no debate ! Whatever it takes… our clinic here in northern Ontario doesn’t have a programme yet … no matter I’ve been making noise throughtout the media!!
Lot’s of noise!!!
Let me Quote something for you…
Good dialysis is like good lovemaking
The longer, the better
The slower, the better
The more gentle , the better
The more FREQUENT, the better
I used capital letters for “frequent” because I remind my wife
To me that sums up nocturnal in a nutshell… I uses these words whenever I talk to people about dialysis … I encourage you to " PLEASE" go to nocturnaldialysis.org … Prof John Agar is the MAN … he has the answers for you !!!
Good Luck and stay strong
Richard C/O Jessie
I love the enthusiasm concerning nocturnal daily hemodialysis that I get on this and similar threads, however, I’m a bit confused and was hoping some of you could clear things up for me.
When you run nocturnal with NxStage are you increasing the amount of dialysate that you would normally hang for short daily? For example I hang 20L which takes me 2.5 hours to spend. Would I use that same 20L over an 8 hour period for nocturnal or would I hang 40L or some other amount? Because if it is only the same 20L it seems I would not get any additional cleansing. I understand I would probably not run at 460-480 and that a slower speed would be gentler on my circulatory system but still wouldn’t affect my clearance.
Studies show that one of the benefits for both nocturnal and short-term dialysis is a more dependable libido - increased sexual desire. But it seems to me that having a dialysis machine next to the bed let alone being connected to it could really place a damper on a partner’s libido as well as add constraints. I understand that the bedroom is not the only place to exercise renewed passions but in the long run it is pretty convenient. What has been people’s experience in this area?
Is the only benefit between nocturnal and short term daily more gentler ultra filtration?
I also understand that the data has been inconclusive concerning adequacy’s with Nx Stage nocturnal. Do we have reliable data comparing adequacy’s of Nx Stage nocturnal vs. short term daily?
I appreciate everyone’s help on this matter.
Erich
HI
It up to your doctor and you, the way I look at if I have to do dialysis I might as well do it at night while sleeping.
Pat Colongione post is well worth reading
bobeleanor
bobeleanor, thanks for the cudos.
TheRiverdude,
Please read my post about starting Nxstage nocturnal on this board.
The amount of dialysate you use is up to your doctor. Ralph is a big guy that is why we are using 60L. On night when I have to use bags we only use 45L.
That is all that the MLA’s Multi Line Accesses will allow (9 bags). When I put them up on the pole I have to be real carful or it could topol over. You need to really distribute the weight.
As for #2, For us I would say yes a little. Not as much as I would like but at our age you grab what you can :). Maybe somone else could elaborate more.
#3. Yes Gentler and you gain your days to do what ever you feel like doing like possibly working. Also feeling a whole lot better.
#4. We have preliminary results but later this week will have more results as we will have been on for a full month. Our center is watching this very closely. I will post when I get the numbers.
Pat
Hi Riverdude
As I use a Fresenius for Nocturnal I will answer on what i know best.
Yes having a machine in the bedroom does affect the “sexual dynamics” of a partnership. Even though we shut all traces of dialysis away after use, for me knowing what I go through some nights when I don’t sleep well and feel uncomfortable affects my ability to “have a bit of a romp” on the off nights. Our lovely bedroom has lost some of its mystique unfortunately. So yes, my girlie libido has been affected, but sex is still good, maybe not as frequent though (going away for a night is great)
If I was doing this all again and I had the means and space, I would have a recliner set up as well for variety and comfort when I feel I am going nuts in bed and maybe do it in a different bedroom,dialysis I mean (; However, I don’t intend doing it more than 4 times a week (again we are talking dialysis (; until my blood results are less than great, as they are still. so at least I have those off nights.
I think maybe younger and older people than me might find it easier to sleep than I do, but unless i was to take sleeping tablets, i seldom sleep well due to trying not to thrash around and ending up feeling stiff and uncomfortable.
As for benefits of Nocturnal, you can take more fluid off slower than short daily, there are no diet restrictions for me, no phophate binders or blood pressure meds and the heart is happier because the blood is getting around more slowly.
Nocturnal is great, but for me it has been a very difficult path but I ain’t giving up, if you can relax and sleep well then terrific!
Cheers
[quote=beachy;11415]Hi Riverdude
As I use a Fresenius for Nocturnal I will answer on what i know best.
Yes having a machine in the bedroom does affect the “sexual dynamics” of a partnership. Even though we shut all traces of dialysis away after use,
Thanks. Riverdude
The grass always seems greener on the other side when it comes to dialysis. Sometimes it is, but you won’t know until you can see it for yourself, with your own eyes. To make the right choices as an individual, and let me tell you, from my experience, it’s a very individual thing, you need to not wear any rose-coloured glasses.
I’ve done both short daily during daytime (I tried mornings, afternoons and evenings at various times, over a four month period), and I was on daily nocturnal for a year and a half, with many short daily’s during that time.
Doing it for a couple of hours during the daytime has some advantages and some disadvantages, and doing it overnight is the same. It is not necessarily a situation of, “Hey, I’ll sleep through the whole thing and happily go off to work in the morning like everybody else”. I hope you will have an extremely flexible, understanding employer, because there will be nights that in French, we call “une nuit blanche”. That’s a night where you don’t sleep much. There will be nights with frequent alarms, you can count on it. There will be nights where something goes wrong and you have to deal with it. There will be nights where you’ve had trouble getting one of your needles in, and then when you do, it causes one alarm after another. There will be nights when the fire alarm goes off if you live in an apartment building, or the power goes out. There will be nights when, without prior warning, the city water turns off for whatever reason. It’s amazing how often that happens during the night, but who but a nocturnal hemo patient would know or care? You won’t much feel like going to work after one of those nights, and even if you do, don’t plan on being very productive!
And even when things go well, I’m not really prepared to sit here and say that you sleep normally. It’s more like a mother sleeps when there’s a newborn in the next room. Some of you mothers out there may remember what those first 6 months were like. You do have to be able to wake up and respond to alarms when they happen. You may also be a little more restricted in your available sleep positions. I found that the dialysis side was impossible for more than 20-30 minutes or so, because it restricted the blood flow to my fistula, and sooner or later, you guessed it, alarm and arm shaking time.
Daily nocturnal is terrific, but I wouldn’t necessarily say it’s the solution to all of our problems. It’s still dialysis. I’ll just say it’s a solution.
Let me put it this way, with nocturnal, you get most of your days free (the ones when you don’t have to be home for the delivery guy, or for the technicians who are there either to fix your machine or to perform some scheduled maintenance, or the guys who change the carbon tanks, or… well, you get the idea. I found I could always count on 3 days at home right off the bat, because I had 3 separate supply monthly deliveries (the dialyzers from Fresenius, the general supplies from the hospital, and the many boxes of dialysate solutions from Baxter. Then, once a month, I had to collect pre and post-dialysis blood. This meant I had to take it to the out-patient hospital lab in the morning. And on those occasions when that included iPTH, I had to get it there pretty soon after collecting the blood when coming off treatment. And that was just the regular, predictable stuff, not including the times when they sent me the wrong dialyzers, or the bottom of the box broke when the hospital delivery guy took it out of the truck, and all the stuff fell into the dirty snowy slush, etc. For the regular stuff, I always knew the day, but not the time of delivery. But it was always a pretty safe bet that it wouldn’t be at 8 in the morning just so I could have the rest of my day free.
Short daily uses up half of your daytime, no matter how you do it. So you don’t get entire free days. But then, you do get free nights. So, it all balances out, I think. What’s more important to you, free days, or free nights?
All that being said, I do feel, no, I do know that daily nocturnal hemo (5 to 6 nights per week) is superior to everything else in terms of how good it makes your lab results look. There’s just no comparison.
Sex? You’re on dialysis, right? What sex 
Just kidding, with some degree of reality. Look, that machine doesn’t have to be rolled right up to your bed when you’re not on treatment. The most obtrusive part of the system is the water purifier. See if you can have that installed in an adjoining closet or something. R/O’s tend to be noisy. During treatment, well, I couldn’t tell you. It can be hard enough just lying there not causing any alarms. But once you and your partner get used to it, you don’t even notice there’s a machine there anymore.
No, more gentle ultrafiltration is just ONE benefit of nocturnal dialysis. Another is that the LONG treatments remove more middle molecules, like beta-2 microglobulin (which causes amyloidosis), and remove MUCH more phosphorus–enough that people who do this treatment often need phosphate supplements instead of binders.
These are not necessarily true of short daily home hemo, though more frequent dialysis (and the higher gradient involved in getting more “first hours” of dialysis) probably means somewhat more phosphorus removal. I don’t know about beta-2 microglobulin: IMHO, that’s one of the important long-term questions about short daily.
You may want to read our Topic of the Month article on why more HD is better. It’s at http://www.homedialysis.org/v1/rotating/0106topicofthemonth.shtml
Thanks Pierre, that was a great post!
[QUOTE=Pierre;11428]The grass always seems greener on the other side when it comes to dialysis. Sometimes it is, but you won’t know until you can see it for yourself, with your own eyes. To make the right choices as an individual, and let me tell you, from my experience, it’s a very individual thing, you need to not wear any rose-coloured glasses.
Doing it for a couple of hours during the daytime has some advantages and some disadvantages, and doing it overnight is the same. It is not necessarily a situation of, “Hey, I’ll sleep through the whole thing and happily go off to work in the morning like everybody else”. I hope you will have an extremely flexible, understanding employer, because there will be nights that in French, we call “une nuit blanche”. That’s a night where you don’t sleep much. There will be nights with frequent alarms, you can count on it. There will be nights where something goes wrong and you have to deal with it. There will be nights where you’ve had trouble getting one of your needles in, and then when you do, it causes one alarm after another. There will be nights when the fire alarm goes off if you live in an apartment building, or the power goes out. There will be nights when, without prior warning, the city water turns off for whatever reason. It’s amazing how often that happens during the night, but who but a nocturnal hemo patient would know or care? You won’t much feel like going to work after one of those nights, and even if you do, don’t plan on being very productive!
And even when things go well, I’m not really prepared to sit here and say that you sleep normally. It’s more like a mother sleeps when there’s a newborn in the next room. Some of you mothers out there may remember what those first 6 months were like. You do have to be able to wake up and respond to alarms when they happen. You may also be a little more restricted in your available sleep positions. I found that the dialysis side was impossible for more than 20-30 minutes or so, because it restricted the blood flow to my fistula, and sooner or later, you guessed it, alarm and arm shaking time.
[/QUOTE]
LOL Pierre
You seem to have an uncanny Knack of knowing exactly what I go through and responding just at the right time to make me feel better! You are a “Canadian National Living Treasure”. (Expect a couple of emails coming your way)
Cheers
[QUOTE=Pierre;11428]The grass always seems greener on the other side when it comes to dialysis. Sometimes it is, but you won’t know until you can see it for yourself, with your own eyes. To make the right choices as an individual, and let me tell you, from my experience, it’s a very individual thing, you need to not wear any rose-coloured glasses.
Oh the saneness of it all. Thanks tons Pierre. I will see if I can get the ok in the spring to try nocturnal. I’m going to copy your post and put it on my desktop. Hope you don’t mind. I just to have near by so if do get into noctutnal, I won’t say how could no one told me. Thank you so much…
bobeleanor
[quote=Dori Schatell;11430]No, more gentle ultrafiltration is just ONE benefit of nocturnal dialysis. Another is that the LONG treatments remove more middle molecules, like beta-2 microglobulin (which causes amyloidosis), and remove MUCH more phosphorus–enough that people who do this treatment often need phosphate supplements instead of binders.
These are not necessarily true of short daily home hemo, though more frequent dialysis (and the higher gradient involved in getting more “first hours” of dialysis) probably means somewhat more phosphorus removal. I don’t know about beta-2 microglobulin: IMHO, that’s one of the important long-term questions about short daily.
You may want to read our Topic of the Month article on why more HD is better. It’s at http://www.homedialysis.org/v1/rotating/0106topicofthemonth.shtml[/quote]
So Dori,
If this is the case, then for NxStage users they must be hanging more dialysate then they would for short term daily, or if they are hanging the same amount then the slower dialysate usage speed causes the better middle molecule removal rate?
If nocturnal NxStagers hang more dialysate then they normally would for short term daily then I suppose that would be the reason for additional middle molecule removal.
I’d appreciate clarification on this. Thanks, Erich
[quote=Pierre;11428]The grass always seems greener on the other side when it comes to dialysis. Sometimes it is, but you won’t know until you can see it for yourself, with your own eyes. To make the right choices as an individual, and let me tell you, from my experience, it’s a very individual thing, you need to not wear any rose-coloured glasses.
Pierre,
Magnifique ecrit!
Your insight is very helpful. For now it short term daily will be the ticket for me.
Short term daily put me on the upswing from three times a week when it comes to libido. Though three times daily sure beat nocturnal peritonial dialysis in that arena. Below is an excerpt from my blog - Tasty Kidneypie at http://360.yahoo.com/the_riverdude.com:
[FONT=Comic Sans MS]I recently wrote this letter to NxStage’s President/CEO Jeffrey Burbank. After rereading it I thought well let’s just post it and see if anyone else has seen the same results.
Here goes. . .
I’d appreciate you forwarding this brief note of thanks to Jeffrey Burbank.
You can find my personal story on Home Dialysis Central where I highlight many of the positive changes that NxStage has brought to my life -
http://www.homedialysis.org/v1/profiles/profiles/ditschman.shtml
But, one thing that I’m really thankful for, which you don’t see too often on the listserves, is the return of my libido. I’m note joking here. When it is gone you don’t really miss it, but when its there you wouldn’t want to lose it for the world.
So, Jeffrey thank you very much.
By the way, I mean this in the purest sense. I married the girl who became my high school sweetheart in 1981.
Anyway, you may want to pursue this angle a bit more in your marketing. Who needs Viagra when you have a NxStage instead of one of those three times a week machines?
Thanks again. I think I hear my darling calling. Erich Ditschman
By the way I received a nice response from Jeffrey.
[I]Bon soi, mon ami. Erich
[/I][/FONT]
Erich;
I don’t think more dialysate has anything to do with middle molecule removal. I think is the amount of time on the machine that has to do with middle molecule removal. Same amount of dialysate is used for noc as daily. On Noc you are on the machine longer therefore more middle molecule removal.
LSB
[quote=Leafsunbear;11459]Erich;
I don’t think more dialysate has anything to do with middle molecule removal. I think is the amount of time on the machine that has to do with middle molecule removal. Same amount of dialysate is used for noc as daily. On Noc you are on the machine longer therefore more middle molecule removal.
LSB[/quote]
So it is the longer contact time with the same amount of dialysate? I think that answer my question. On nocturnal you just run the dialysate at a much lower speed as opposed to my 7.9 L/h on daily. Thanks, Leafsunbear. Erich
My husband went nocturnal 2 months ago. He had lab work last wek and we got the results today. WE do blood pre treatment and post treatment. In Canada the range for creatinine is about 50-140. Pre his was 445 post was 150. On regular daily - 3 times a week it was always over 1000. BUN normal is up to 8.9. Pre his was 7.2 post was 1.6 last test post was 0.9. Normal for phos is below 1.48 pre his was 1.58 post was 0.57. Everything else was normal. He feels great and what a big change to life having all this freedom. He always felt well on hemo but having gone nocturnal he realizes how much better he could have been feeling.
Thanks, Delphine. I would expect as much from 3x to daily nocturnal. My quest has really been to find the difference between short term daily and nocturnal. I think LSB hit on it with the longer run reducing the middle molecules.
But what does removing the middle molecules mean relative to outcome and daily energy level?
Perhaps the research is not conclusive yet on this matter. I imagine not. Thanks for everyone’s help. Erich
It’s not about the longer contact time with the dialysate, per se. The reason I suggested that you read the article about why more HD is better is because it explains the process of water shift inside the body. It takes time for wastes to move from inside the cells or in between the cells into the blood where they can be removed by dialysis. Yes, you need dialysate, and a higher gradient will result in more solute and water removal–but only from the blood. The blood only contains about 15% of total body water, and thus, presumably, only about 15% of total body excess water and wastes.
During an HD treatment, there is one gradient of the blood vs. the dialysate. But as wastes and water are removed from the blood, there is a second “gradient” of the cleaned blood vs. the still-“dirty” intracellular and extracellular fluid. As the blood becomes cleaner, wastes and water diffuse through the cell walls and into the bloodstream. If a treatment only lasts 3.5 hours, these newly-migrated wastes and water won’t be removed until the next treatment. With short daily, that next treatment may be tomorrow. So, at least you don’t wait too long to clean the blood again (plus, you’re building up MORE wastes and excess water each hour). But with nocturnal, you are actually removing more wastes and water during the treatment, because there is time for them to migrate into the bloodstream. It also takes much longer for middle and larger molecules to shift from one fluid space to another.
Does this make sense?