Ahh Pierre, how do I disagree with thee? Let me count the ways.
For you short may be 2 hours but someone who would need 5 or 6 hour runs to be maintained on a three day a week schedule would – I can assure you – find three hours to be a short run.
It isn’t that “most dialysis” takes place in the first two hours it is that you get a diminishing return. The first hour does more than the second hour, and the second hour does more than the third but nothing happens after two hours. The third hour is still better than no time at all. The idea that two hours is enough comes from the false idea that four hours three days a week is the standard. As a starting point – to market the idea of more frequent dialysis to patients – it was sold by saying “We’ll take your current weekly total 4 x3=12 and spread that across 6 days and presto 2 hour runs. No more dialysis but you’ll feel so much better.”
And this is true but not everyone is dialyzing for 4 hours and for many people the beef against dialysis is sticks. Once the needles are in 2 or 3 hours is really not that different.
You lost me by saying “doing more than 2 hours of hemodialysis on a daily basis forever is intolerable. That’s half a day of every day” Hmmm I typically am doing dialysis from about 6:30 PM when I start getting ready to 10:30 PM when I shut off the light – 4 hours a day to get three hours of dialysis. My day starts when I leave the house at 7 AM (I wake up about 6:30 but I wont count that first sleepy half hour) and ends when I go to bed at 11PM – 16 hour days. So a quarter of my day is given over for 12 hours of effectiveness. Of course while I dialyze, unlike you, I can catch up with TV or movies, visit with friends, eat dinner, drink wine, surf the internet, pay bills or talk on the phone. Okay you multitask dialysis with sleep, I multitask dialysis with a range of other things and I imagine get a higher quality nights sleep. Isn’t that just a personal choice you say sleep, I say surf?
I’m surprised that you imagine daily short dialyzors sitting quietly in a room doing nothing.
The idea that if you had to change your routine you’d hate dialysis is amusing. Two years ago wouldn’t you have claimed that if you had to dialyze every night for eight hours you’d sooner give up and stop dialysis?
Pierre your post surprised me – I thought we agreed that the idea is to look at the full range of options available and pick the one that best fits ones life at that point in time. I have to be at work at 8am, I’m done at 4:30, I need to walk the dog (and myself) before and after work, I need to get a good nights sleep in order to be able to work on a computer all day. Given just those facts – lets put aside my volunteer activities (every time I take two hours off to attend an NKC meeting during the day I stay late to make up the time) and that I like to be involved with the online community, put that aside. Just look at my work and dog responsibilities and explain how daily nocturnal would be a better fit.
The idea is to have a full range of options and pick what is right for you.
Our life situations very day by day so it would be nice to have a machine that could be there for us when we travel. A machine that would be there for short treatments and a machine that would be there for nightly treatments and a machine that would be there for those who use a single needle. And a machine that would set it self up put us on and take us off. (Did I just go to far?)
I am getting real confused on this 2 hr and diminishing returns thing. I was told the NxStage Co. has a limit on weight for dialysis patients useing the machine. I was told by our staff they were letting heavier patients use the machine and giving them longer runs. So if nothing great is happening after 3hrs why do they tell some patients to run longer? If not much is gained by running longer than 3 to 4 hrs. why is it nocturnal patients need to add phosphorous and some short or long daily patients still require binders?
I was also told the patients in the daily program were doing really great but the labs did not equal those on the nocturnal program.
Is anyone really saying that short daily treatments 2 to 3 hrs, or long daily treatment 4 hrs to say 6 hrs, are equal to nocturnal treatments 7hrs and up.
Some of our nocturnal patients get by really well running 4 to 5 nights a week do any daily patients get by on just 5 treatments a week and could they possibly only do 4? The nocturnal patients that are running 4 to 5 nights a week aren’t just deciding to do this on their own the nephrologist is telling them they can based on their labs.
You must be better at sitting in a chair for hours than I am
For me, doing things while on dialysis is not the issue. I just can’t stand being stuck in a chair like that. Two hours is about my practical limit if I’m doing it every day. More than that and it becomes an unbearable squirmfest. I hated the 3-1/2 hours at the dialysis even more, but at least I had a whole day’s break in between to work myself back up to it.
I remember the very first time someone brought up the subject of longer dialysis being better. I said to the person, “You want to be on dialysis for 8 hours! Are you insane?”. As time went by, I realized that the advantages were undeniable, especially after I was hospitalized with a heart scare. But, I realized I could only do it if I was sleeping, so nocturnal it was.
When I do any kind of work, I need to be able to move around, stand, walk, look out the window, etc. No, I didn’t have attention deficit disorder as a kid
That is why we really need choices. My dad can’t sit either. He isn’t a TV watcher and wouldn’t dream of sitting in front of a computer or talking on the phone for more than 5 minutes. There are a few rare exceptions. 1 is when his grandson calls he can handle 20 minutes and sometimes he can handle a baseball game on TV as long as they don’t take to long between commericals. Oh yeh, one other exception, when he is sitting in his shop taking a nap but that isn’t the ideal spot for a dialysis machine.
Marty you bring up a good point. The diminishing return statement I made is simplistic. Some molecules – like urea – are removed on a curve i.e. there is a diminishing return. And I think this is true of amyloid. Other molecules are removed at a steady state over time – for instance phosphorus.
I think I linked previously to a study explaining this I’ll need to do a search.
Are all the treatments equal? No. But is the marginal difference important or of enough value to justify the effort additional time and/or frequency requires? That is the decision that the individual should make, ideally, after trying a range of times and frequencies.
There is adequate and optimal dialysis in terms of clinical results and adequate and optimal dialysis in terms of ones life style. Dialyzors need to take this together, not one or the other. The variation among individuals is understandable when viewed through this lens.
It’s like flying - I flew to Philly on Monday for a three hour meeting on Tuesday. 11 hours of flying, 3 hours of driving for one meeting. I like to think I do what needs to be done (I know some would say that I don’t leave well enough alone :lol: ) . And I am aware that there are much worst things to have to do in life besides sitting in a chair. Some times I have to do those things too.
I think we make a lot of assumptions about longer, more frequent dialysis - assumptions that have not really been validated by true clinical trials, and which probably will never be. I know that when I compare my own short daily lab results against my own daily nocturnal lab results, there’s a world of difference. But that’s short term stuff. I’m not talking about dietary advantages, but actual morbidity and mortality, fistula life, heart, etc.
We have scant evidence about both short daily (the “standard” 2 hour a day kind - or at least, the same number of total weekly hours as the patient required on conventional 3x week hemo), and perhaps a bit more but still scant evidence about nocturnal (mainly because it has been around longer). However, we have even scantier evidence about longer 3-4 hour daily treatments. We assume that since nocturnal runs at slower, gentler speeds, it probably doesn’t stress the heart or the fistula as much - but then, the patient is on much longer, so that may negate that advantage in the long term. I think we can assume that short dailies don’t either simply because they are short. But I’m not so sure about daily 3-4 hour treatments running at normal conventional hemo speeds. And if you run those at slower nocturnal-like speeds, than you aren’t getting much more than you would with 2 hour treatments at normal speed. But I’m evidence-driven. Show me the evidence that 3-4 hour daily is better than 2 hour daily, unless the person really needs a lot more dialysis than the average person.
Marty, as you know, I went from 6 nights per week for most of the past year to 5 nights per week. My nurse suggested it (after I mentioned that I thought I might be getting too much dialysis), I agreed, and then she ran it by our nephrologist who OK’d it. A lot of nurses I’ve talked to think hemodialysis 6 days or nights per week is asking a lot of the patient. You can burn yourself out with too much dialysis, just as you can with too much work.
My personal feeling is that there are diminishing returns even for the longer nocturnal times. I’ve found over the past year that 6 or 7 hours is about right, but whenever I do 8 hours, I get that same worn out feeling I used to get after my 3-1/2 hour conventional treatments - it’s unmistakable. My home hemo neph says that there is absolutely nothing which shows that going beyond 6 hours really adds anything, except the ability to sleep a couple of hours more before coming off. Labs I’ve had over the past year at 6, 7 and 8 hours seem to bear this out. There’s virtually no difference. Similarly, there doesn’t seem to me to be much difference between 5 nights and 6 nights, except that I get to enjoy a mid-week break from dialysis (at the expense of having to watch my fluid more on the off-days, and maybe potassium a little).
Pierre I think that is about right. One edit I would make is to change “patient required” to patient received if referring to four hour, three day a week regimes. As for me, as I have written before, I use the Scribner Dialysis Product to figure out my schedule. My target is 100. A HDP of 100 is my goal based on my observation that at 100 I do not need EPO to have a hemoglobin of 14+. That’s how I figure it out.
Tonight I’m running two hours, as I did last night, and Monday morning – so I had a half day off between Monday and Tuesday. Sunday I ran three hours mid morning. Saturday I had off. So now due to scheduling I’ll run 7 or 8 days in a row for two hours at a time. Thursday I’m presenting a home hemo segment at a CKD class so I wont get on ‘till 10 PM. Friday I’ll try to get to bed early so a 7 to 9 run at night would be helpful for a big day Saturday and a treatment pro’ly starting after 9 PM. By Sunday I am sure I’ll know what day will be my next day off. I like variety.
Who knows? In two weeks maybe I’ll do six three hour treaments or take two half days off - dialyze Thursday then Saturday morning, Sunday morning and then Monday night. As long as my hemoglobin stays up I’m happy - right or wrong that’s how I choose my dose.
