Questions on Nocturnal Home Hemo

Discussions for Patients, Family, and Friends HD For Patients
1

  1. I realize a partner is recommended whenever possible for Home
    Hemo, but do most experienced nocturnal home hemo users who self-
    cannulate have a partner there staying awake while you sleep during
    dialysis?

  2. If an in-clinic HD patient required 4 hours of dialysis machine
    time, three times a week, approximately how many machine hours per
    treatment would a nocturnal home hemo user normally require every
    other night?

  3. I’m pre-dialysis and I get out of bed to pee every 1-2 hours
    after I fall asleep. If that didn’t change much when I started
    nocturnal home hemo, how difficult is it to disconnect and reconnect
    during a session? (I hate urinals.)

  4. I’ve heard the NxStage system isn’t currently being used for
    nocturnal home hemo. Is there any reason it couldn’t be used at
    night for the same number of weekly treatments (6-7) one would do
    during the day (which I understand averages about 3 hours of machine
    time per treatment)?

  5. Does anyone know if the NxStage system’s
    effective running machine time is mechanically limited to 3-4 hours
    per treatment? Or, could it possibly be used for lengthier
    treatments if one wanted to do nocturnal for lets say 6-8 hours
    every other night?

Thanks in advance for any help.
Joe Z, Ormond Beach, FL

2

A partner is only useful if the person on dialysis can’t do it him/herself. It’s not like the partner is sitting there watching over the patient. Even the partner sleeps. There is NOBODY watching over a nocturnal hemo patient during the night. The patient is expected to wake up if there are any alarms, and this is one thing they test during the 3 night hospital stay when converting to nocturnal hemo. Even on daytime short daily hemo, a partner is really only needed as a helper, an extra pair of hands so the responsibility is not totally on the patient. For example, days will come when you’ve got the flu or something, and you really would like to have someone else take care of it for you.

If you do nocturnal every other night, you are losing out on the benefits of doing it nocturnally. If you’re going to go to the trouble of doing this, you may as well do the full program (6 nights per week, or at least 5 nights) and have no dietary or fluid restrictions, and have the maximal health benefits (because it IS a lot of effort and trouble compared to just showing up at the dialysis centre). The nephs who run these programs don’t like patients to do less than 5 treatments per week, with 4 being the absolute minimum. Otherwise, it’s just not worth doing it. You may as well just stay on regular 3/week dialysis in centre. Nocturnal is 6-8 hours usually. Let’s say 6 hours, 6 days a week. That’s 36 hours of dialysis, vs 12 hours regular 3/week dialysis. The 12 hours on short daily hemo (2 hours 6 times per week) can be compared directly to 3/week in-centre hemo because the dialysate and blood flows are the same. Nocturnal runs at reduced flows, so you can’t really compare the hours directly. Like on 3/week dialysis, people will vary in how much dialysis time they need. This is why some people on short daily or nocturnal hemo can get by with 5 treatments per week rather than 6.

It’s a lot of trouble to disconnect just for a pee. Plus, you don’t want to leave blood stagnating out of your body too long. It’s not really recommended. I know how to do it, because I’ve seen it done when I was in centre, but in my home hemo training, I wasn’t even taught to disconnect and reconnect - only practised disconnecting in an emergency or power failure. It’s one thing to have a nurse or tech disconnect and reconnect you at the dialysis centre, but at home, doing it yourself, I doubt that too many patients would find doing that preferable to just using a urinal. There’s too much handling of open bloodlines, for one thing, and that increases chances of contamination, of air embolisms. Besides, since the machine is pulling fluid off you all night, you probably won’t have to urinate as much as you do now. You probably won’t have to urinate as much during the night even if you go on in-centre 3/week hemodialysis, simply because you don’t urinate as much when a machine is removing 2 or 3 litres off you every other day.

I don’t know anything about NxStage. I just use a regular, conventional dialysis machine. It’s not really any harder. It just takes a little more time to setup a treatment (about an hour and a quarter, maybe an hour if you do it really fast). Some machines can’t do nocturnal because they don’t have a heparin pump, and some can’t work at the slower dialysate flows of nocturnal and the sometimes much lower ultrafiltration rates (UF rates can be low because ultrafiltration - ie. removal of fluid - is spread out over 6-8 hours. Many machines need a minimum UF rate to work.

Good luck. Let’s hope you remain pre-dialysis for a long time.

Pierre

3

Wow- thanks for that fantastic education, Pierre. Everything you said makes sense. Thanks to your suggestions and advice this won’t be the first time I start accepting things that I may not have liked to begin with, like daily (or 6X per week) home hemo and the “biggie”, using a urinal. And what you say about less output makes good sense too. My interest in NxStage is purely based on the physical space and plumbing limitations in our home. There’s no practical way any additional plumbing could be installed. Fortunately we do have ample storage space for supplies in our garage if needed. The bigger problem is finding a NxStage training and location within daily driving distance from home. We couldn’t leave my partner’s elderly Mom home alone more than overnight, and even if we could there’s no way we could afford living in a motel during training. Thanks again for this very valuable information.
Joe Z, Ormond Beach, FL (Daytona)

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Hi Joe

I’m glad my limited advice was useful. By the way, I love Ormond Beach. I used to go to Florida every winter for 2-3 weeks, and most of the time, we ended up staying in Ormond Beach. Some of that time was spent staying at the old Ocean Crest Motel, which I believe has been renovated since them.

You know, one of my worries when I applied to switch to home hemo was the plumbing issue. The intake nurse and chief tech had to come and inspect the place to see if it was suitable. I live in a tiny apartment on the 7th floor of a mid-rise building, and I was afraid it couldn’t be done. As it turned out, the extra plumbing and the two extra electrical outlets were trivial work (done free by the hospital). The tech said there’s almost always a way. They just added a short copper pipe and PVC drain pipe extensions from the wall behind the bathtub (these are just tacked onto the wall, and then clear, flexible hoses go to those from the water purifier and the dialysis machine. There isn’t much to it, really. They can run the hoses and/or pipes along baseboards, and they can just pass them through holes drilled in the wall if necessary. It ends up being a very neat installation.

One more thing about setup time. When I say an hour to an hour and a quarter, much of that is just waiting for some test to complete, or for the machine to prime itself and later to recirculate. It only actually takes a minute or two to actually install the blood tubing and dialyzer on the machine and it’s really pretty simple. For example, while I wait for the water purifier to rinse for 5 minutes, and then for the dialysis machine to do its alarm test, I do other things, like getting my needle tray ready, getting my pre-treatment assessment done. calculating how much fluid to take off, getting any drink or food ready for during the treatment.

Pierre

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  1. I did not have a partner while on nocturnal dialysis.

  2. as Pierre said, nocturnal is normally done 7-8 hrs, 6X a week.

  3. I peed through nocturnal dialysis and it is harder for a woman. I kept a covered pail next to my bed and used it. it would be a major hassle to disconnect and reconnect while half asleep.

  4. NxStage is not used for nocturnal because there is no way to administer heparin during the session. it is given at the beginning.

  5. NxStage is programmed according to the fluid removal required, and other factors. see 4 for reasons it can’t be done nocturnal.

I’ve done both nocturnal (Fresenius) and NxStage and preferred the NxStage for ease in setting up and quicker treatments but I must admit the Fresenius did a better job of cleaning my blood. the down side of Fresenius is the loss of sleep due to alarms, the excessive use of water and electricity, the space used for the machine and the RO. supplies for both are about equal.

6

Thank you, Spiderwoman, for the additional information and the Heparin limitation with NxStage. I too strongly favor NxStage, so I need to return to thinking about 6X daily but not nocturnal. I’m normally awake by 5AM, so I could plan to dialyze first thing in the morning.

Now I’m wondering, generally speaking, why 3 to 3.5 hours with NxStage 6X per week seems to bring the same physical benefit as 7-8 hours 6X per week nocturnally on other home hemo systems. Can anyone explain that in layman’s terms?

Pierre, thanks for the additional information on plumbing and setup time. No plumbing is a major consideration to me. Beam me up in advance should you ever return to Ormond Beach. I spent 20 years in South Florida (Boca Raton) and witnessed the population explosion. Ormond Beach to me is a whole different world- we love it and are here for the duration. I hope development is done slowly and sensibly in this area (Volusia County) though the area to our immediate north (Flagler County, city of Palm Coast, is one of the fastest growing counties in the US. We avoid some of the already overcrowded roads.
Thanks again to you both.
Joe

7

Awhile back I was invited into a Nocturnal research with the NxStage, but sadly I had to decline it as my schedule didn’t fit and of course am a person who needs to move alot when sleeping, so the 6x a week was my choice. At first it was for only 2 hours but now I do it 2 1/2…

I might want to do 3 hours every 2 days but am waiting for more research data to see whether there’s a big difference or equal amount of dialysis…so time will telll…

8

Essentially 3-4 hours a day 6 times a week filters approximately as much blood as 7 hours nocturnal as the blood flow rates are faster during short daily.

Nocturnal is better and you would probably find that you have no restrictions on nocturnal, but my short daily treatments (well not that short I do 4 hours 6x a week) are giving me very good results with few restrictions once we ironed out a few things.

I would love to try the NxStage but until they get a more efficient dialyzer I am too large to get sufficient dialysis with their system.

9

A slow, nocturnal treatment may remove more beta 2 amyloid than a short daily treatment. Beta 2 amyloid can cause amyloidosis (deposits of a wax-like protein anywhere in the body) over a period of years, which can lead to joint pain, carpal tunnel syndrome, etc. Not sure if there are comparative data on both types of treatment, tho. It may just be that getting the treatment daily is what’s needed to prevent amyloidosis.

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The reason so-called “short daily” hemodialysis works better than 3 times per week hemo is because during a dialysis treatment, except for fluid removal, most of the work is done in the first 2 hours of treatment. That’s the rationale behind short daily hemodialysis.

However, there is just no way that 2 hours 6 days per week is as good as 6-8 hours 6 nights per week. It’s good, but it’s not as good as nocturnal. For example, short daily for most people is a 2 hour treatment. That’s what it was for me. Total blood volume for a 2 hour treatment running the blood pump at 400 was in the neighbourhood of 44. On 6 hours of nocturnal running at 300, total blood volume through the machine is more like 105. So, that’s one heck of a big difference. It’s such a big difference that on nocturnal hemo, not only do you not have to diet for phosphorus, they have to add some to your dialysate. You can take your dialysis diet package and throw it out the window. Moreover, there is NO fluid restriction. The only fluid restriction is what your body can handle without you becoming short of breath before the next treatment. There IS a fluid restriction with short daily, because you can only remove so much fluid in a 2 hour treatment, and even in a 3 hour treatment. Now, it’s important to note that fluid is never totally free, because there’s always a chance you might have to miss a treatment due to a machine breakdown - so you have to keep it within reasonable limits, no matter what kind of dialysis you do.

The other issue is that with nocturnal, fluid removal is spread over 6 to 8 hours. That results in a fairly low ultrafiltration rate. By contrast, for the same weight gain, short daily has a pretty high UF rate. The lower UF rate is much, much less stressful on the body, and the heart in particular. Cramps in the legs and queasyness in the stomach become a thing of the past. There is virtually zero recovery time needed after nocturnal hemo, unless you haven’t been able to get sleep that night. Short daily hemo is the same as 3/week hemo, except more frequent. Same dialysate flow, same blood flow. During nocturnal, blood flow runs at 300, and dialysate flow runs at 300. It almost feels like nothing is happening at all. And since the flows are so low, the arterial and venous pressures are significantly lower too. This means you can easily go through a whole night without even one alarm going off.

Now, of course, like some are doing, it’s possible to do longer short daily treatments, but, you have to know what you’re getting into. A 3 or 4 hour treatment 3 times a week is one thing, but, imagine doing that every day, 6 days per week (and having it be entirely your responsibility too). That’s half the day gone each day, and it’s a pretty relentless schedule. No matter what type of machine is used, there’s going to be setup and cleanup time in addition to that 3 or 4 hour treatment. With nocturnal, it might take a couple of weeks to get used to it, but you will sleep through most of it. I don’t know about anyone else, but when I was doing my dialysis in-centre, I used to consider any time I dozed off during the treatment as a Godsend. There’s nothing like waking up when it’s over.

There isn’t much controlled clinical trial evidence about either form of daily hemodialysis (due to the almost impossibility of controlled clinical trials in that setting), but boy, there’s a lot of good observational evidence. For me, there’s no contest. Daily nocturnal hemodialysis is simply the best treatment that nephrology has to offer. It’s so good that you may begin to wonder if it’s worth going through the trouble and potential problems of a kidney transplant. It is worth getting a kidney, of course, but you might just stop to wonder if it is.

I’m not saying short daily is not good - just to be clear, and I’m not putting down anyone’s choice. It would be my second choice if I couldn’t do nocturnal for whatever reason. But it’s not quite in the same league as daily nocturnal. When deciding, just keep in mind that doing a short daily treatment of just 2 hours will easily seem like it takes as long overall as an entire 3-1/2 to 4 hour in-centre treatment. I think most people don’t realize this until they actually do it. But, unlike the 3/week in-centre tmt, you are doing it virtually every day, and you are doing it yourself. It’s the same with nocturnal, but the idea is that it’s done during sleep time and it doesn’t impact on your daytime as much.

No matter what you do or choose, there are always downsides to anything. With nocturnal, one downside is that many people might not be as alert when setting up say at 10PM as they would at 10AM - but that’s nothing a good stiff cup of coffee can’t cure if necessary. Don’t worry about the caffeine keeping you awake later, because dialysis actually removes caffeine from your blood. And then there’s the issue of more limited sleeping positions. You won’t be sleeping on your stomach while doing nocturnal, but, you can easily curl up and sleep on either side, not just on your back. Also, at present, the machines suitable for nocturnal hemo won’t travel with you. But, should you want to travel, you can always revert to 3/week in-centre hemo during a trip, as long as you plan ahead. Also, don’t forget that the machine used for nocturnal can just as easily do short daily, and you can switch pretty much at will at times when it might be more convenient to do so.

Pierre

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I’ve done every other day nocturnal and daily nocturnal on the Aksys and one thing I found with every other day nocturnal is that it is difficult to get use to the over night treatments when you do an every other day schedule. I found that I would have a restless night on the machine and then sleep soundly when I had the night off. When I did daily nocturnal after a couple restless nights I finally was so tired that I would sleep through treatment, eventually getting use to sleeping while hooked up. So it may be hard to ever get use to sleeping on the machine when going every other day.

I agree with a lot of what Pierre said that doing daily treatments can wear on a person but in my case I’m mostly at peace with my treatments and am able to maintain a six day a week schedule dialyzing 3 hours. It will be four years on short daily this August (after 11 years incenter) – one year on the B Braun with a helper and three years self dialyzing on the Aksys. For me dialyzing three hours a night six days a week is manageable – my schedule is such that I am ready for a couple hours down time at the end of the day before bed.

My regular schedule has me up before 7 in the morning, off to the park to walk my dog for about 40 minutes on a two mile circuit, then to work from 8:30 to 4:30, back to the park on the way home, then most days I’ll stop by the gym getting home around 6:30. Ideally I’ll get on between 7 and 7:30 , later if I need to get myself dinner and earlier if someone will feed me while I am on the machine. After treatment I walk the dog and then go to bed. So my day starts at 7 and finishes at 11. When I talk to friends they have a very similar treadmill.

Of course none of my friends have to dialyze but their evenings are just as full with their commitments. The idea of having three hours a night to watch TV, read, visit with drop-ins or surf the internet sounds pretty good to friends that have longer work hours or busy family commitments. I don’t have any friends with a lot of free time, we all lead busy lives it’s just the details that are different.

As far as the differences between the machines one aspect that is hard to get a lot of information on is the chronic inflammation that most dialysis patients end up with, and in fact may contribute to the amyloidosis that “guest” posted about. I don’t think amyloidosis is well understood but for those of us looking to be on dialysis for the duration we should weigh the benefits of ultra pure dialysate and any other strategies that will lessen the chronic inflammation response. The impact of chronic inflammation and cardio vascular disease is just now the subject of study.

As far as traveling, I would love to show up at the train station in Amsterdam with a 3 month Eurail Pass and no reservations (just as many of my friends would) but that just isn’t in the cards (just as it isn’t an option for my urinating friends but for other reasons). However, even though I need to maintain a three day a week dialysis schedule while traveling I travel more for pleasure than any of my friends. I’ve been to Europe every year since 1996, traveling for as long as 8 weeks and in 1999 I traveled for three months going all the way around the world. In November I think I will bag my sixth continent when I travel to Ecuador and Peru. The appeal of NxStage would be in avoiding some US units, I think it will be a while before it will help travel outside the US.

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You’re truly an inspiration to other dialysis patients, Bill.

Pierre

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Pierre I appreciate what you’re saying but I think you can understand that when dialysis works you feel pretty good, and for me dialysis works so why wouldn’t I do what I do?. I think the remarkable thing is that I’m remarkable. I think if more people dialyzed daily they would have the energy to find and/or pursue their passions.

I also think the internet is a huge help because it allows us to interact and find out what is possible. I may not want to do it but I know it is possible for me to train and complete a triathlon because Shad Ireland has already done it and if he can do it so can I (in theory). I know someone who started dialysis in 1966 so that means I should plan on retirement in 20 to 23 years. I travel so it means you can too. Lots of people self dialyze so no one can say it can’t be done. The internet makes it easier to challenge expectations.

Living in Seattle I had an advantage in pre-internet days because there were so many examples to challenge expectations. I knew Mike Matson (who started dialysis in 1971 and made it to last year) Mike self dialyzed alone, 3x a week in the 70’s and 80’s. I knew if Mike could do it I could too. I know a person who is thriving after getting a transplant 12 years ago after 19 years of incenter dialysis. No one knows what tomorrow will bring just do what you can today.

14

I understand what you’re saying Bill. I find anyone who has a positive attitude inspiring. I actually felt relatively good on 3/week in-centre. I could have “happily” stayed on in-centre hemo until I got a transplant, if not for a couple of things which happened late last year.

First, I found out that instead of progressing up on the kidney transplant waiting list, I actually dropped down 16 places since starting on it, over a period of two years. This was apparently because here it goes strictly by the date of first dialysis. I was quick to complete my evaluation and to get myself on the transplant list once I started dialysis, but people who weren’t as quick about it eventually got on the list after me (as did people who moved from other provinces or regions), and as they did so, they slipped in ahead of me by date of first dialysis. Whereas early on I was expected to get a kidney within 6 months to a year, now it was suddenly 2 or 3 years. And if that wasn’t bad enough, I was actually called in and admitted as a backup recipient just a year after being listed, didn’t get that kidney at the end of the day, and never heard from the transplant people again. That was pretty discouraging, but daily hemo offered hope not only of staying healthier, but of a more normal diet. With a name like mine, you’ve got to guess that good food and drink are important to me :slight_smile:

Secondly, at about the same time, I started experiencing some chest pain while on dialysis, and that led to a week in the hospital for evalution. It turned out to be Ok, but I was immediately put on hold from the waiting list, and my active status didn’t get restored for 3 weeks. Again, daily hemo offered better hope of staying healthy. I was also put on hold from the waiting list for six months while a bout of pancreatitis resolved. All this conspired to make me look for a better way.

A person like me who reaches the point of kidney failure due to an immune system-related kidney disease is actually fairly healthy other than the kidney failure itself. I guess I would consider myself an encouraging example as a dialysis patient, and this is how I approach it with members of my IgA Nephropathy Support Group ( www.igan.ca ) who are approaching dialysis, usually after many years of chronic renal insufficiency. Dialysis, whatever form of it, is not a catastrophe, and it’s quite liveable if it’s done right and the patient is aware and informed, and keeps a positive attitude about it, and keeps active and as fit as possible. Of course, I know now that daily hemo is even more liveable, which I didn’t know the first couple of years on dialysis, and I would recommend it to anybody without hesitation.

In fact, I consider that my asthma and respiratory allergies are a much more limiting factor in my life on a daily basis than just the dialysis.

The other major limiting factors are the financial implications of reaching kidney failure when you’re middle-aged while not steadily employed and without benefits, but that’s another story. Once you’re in the poorhouse with chronic illness, it’s almost impossible to get out of it without winning the lottery, no matter how positive you are. Luckily in Canada, the health care aspect of it is taken care of pretty seamlessly, and the quality of renal care in my Province is excellent (and I guess living in the Nation’s Capital doesn’t hurt). Based on my experience, I would very much recommend to anyone who has even a hint of a possibility of eventual renal failure to hang on to whatever job and whatever insurance benefits they have (life, disability, extra health insurance). And if you can’t get, say, life or disability insurance because you have blood in your urine, self insure by socking some money away in a registered retirement savings plan or something. If you can do it, it will come in handy later on.

Despite these limitations, I consider myself extremely lucky and priviledged to have had the opportunity to go on daily home hemo, both short daily and nocturnal. I think that if I could do it over again, I would go for PD first, and let that work as long as it can, and then go on home hemo. In my case, PD wasn’t recommended due to some abdominal issues.

BTW, I love Seattle. I spent many a weekend there when I lived on Vancouver Island during the mid-1970’s. I used to take the Coho ferry across Juan de Fuca Strait from Victoria BC to Port Angeles WA, and drive down towards Seattle from there. There was another beautiful ferry crossing at some point to get to Seattle, I think across Puget Sound, but my memory of those days is getting a little foggy in my old age.

Pierre
IgA Nephropathy since 1978
Thrice-weekly in-centre hemodialysis since 2002
Daily hemodialysis since winter 2005
www.igan.ca

15

I totally agree Pierre. Of course when you add in comorbidities the waters get a bit muddy but I think your point is still valid. My comorbidities are wanderlust and the inability to say no. The wanderlust is expensive and the inability to say no keeps me busy.

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I’ve never had a problem with the “No” part. I’m married :slight_smile:

I did travel extensively in better days. I hope to be able to do it again someday. I don’t think there’s a greater experience in life than travelling abroad, not to mention that it’s just plain fun too.

Pierre