I guess I could, in a way, answer your question much as I did the question posed by Alaskagirl today re ‘Starting Nocturnal’ …
Firstly, this answer does delve into specific treatment advice for an individual patient and secondly, as I have often stated at this site, I have only limited (as yet) experience with the NxStage system. While I have been familiar with it since 2006, used it that year in Seattle and Palo Alto, have long known John Moran and Brigitta Schiller and their experience with it, have followed Bob Lockridges’ journey to it and now will be one of the 1st units in Australia to have access to it as it has only just ‘arrived’ here … despite all this, I am not a NxStage expert and would prefer to defer giving answers re specific dialysis NxStage parameters until I have gotten far more ‘down and dirty’ with it than I have to date.
That said, my reading of your question suggests that right now, he is getting dialysis 5 days in each week (3 days on, then 1 off, then 2 days on, and 1 off). You are delivering 3.5 hours a run. That summates to nearly 18 hours of dialysis a week … which, at least in our earlier Australian data (published in an HDI supplement in 2010 by Peter Kerr and myself), is close to the 18 hour cut off the our ANZDATA registry suggested conferred an advantage in outcome and survival.
As you know, I have always made the point the more is better. However, more – while awake – can become life-style intrusive, life-style threatening and life-style limiting. The whole point of good dialysis (and by good dialysis, I mean better, longer, more frequent, gentler, more effective and efficient dialysis) is to enhance life-style and quality of life … and, if the wealth of data out there is right, survival too.
This is why the switch to through-the-night dialysis (now long-shown to be safe) makes such sense.
As I read your post … you are the carer. Not only does he ‘prefer’ to start his dialysis at 4 or 5 am (your next post) but, as you are his carer and ‘do’ his dialysis for him (I might ask why … but won’t), that means you are also getting up before 4 or 5 am to start his dialysis.
I read between the lines that (a) you are a loving wife (b) you care deeply for Bo and © you ‘don’t mind’ doing all that you do … but, you have a quality to your life too, and more hours still of waking-time dialysis will not only erode his QoL by using up his waking hours in more and more dialysis, but it’ll wear you down too.
Although longer is better – it is gentler, slower, kinder dialysis – it will come at a toll, if it remains daytime based.
Here, in Australia, we do not commonly encourage long, slow dialysis as a daytime therapy – though some patients prefer it that way and if they do, it’s their choice to do so. Rather, we prefer longer, slower home dialysis to be done through the night. Further, we always, always, always train the patient. We do not train primary carers. We believe that it is the patient’s responsibility to perform their own dialysis: it is their disease, it is their therapy. This is a signal difference in attitude and approach, US compared to OZ.
As for the specifics of litres of exchange, flows and FF … this is best left to your treating team.
I am not sure I answered your question, but you do need to think of yourself in all this … there is a carer burden to carer-led dialysis that I simply cannot get my head around – and I keep asking myself ‘why is the responsibility for (home) haemodialysis always left to a carer … why not the patient?’
This is not a reflection on you … far from it … it is just a reflection on a system that insists that it be so.