A few questions concerning dialysis

Ask Our Experts Dr. John Agar, Nephrologist
1

Hello Dr Agar and others :slight_smile: I have a few questions and dont know if i should ask seperatly or just go for it. Well, im going to ask them and then seperate and explain better if needed.

So, my husband Bo is doing NxStage at home and i am his partner. When we just came home, he was the typical 2 1/2 hours at 400. I lengthened his treatment to 3hours x 6days which was 350 and 32 ff. I wanted to encourage even longer so I asked that he go 3 1/2 and 3on one off, and 2 on one off. Dr aggreed to this and now, what i want to do is on the 2 days on, i though we should use more dialysate and hopfully get him to go 4 hours at least on those two days. Am i way off or what would a suggestion be. His numbers are all good even with the 3hr treatment so im not sure if im just making him stay on longer for nothing.
Right now his weight is 69.3 run at 320 for 3 1/2 hours at 32 ff and the 5 day week. His V is 120’s and A is 60’s. Usually takes off .5-1.0. Rarly cramps during treatment, but the following morning about 330 am, he gets leg cramps.
ok, this is enough for these questions
 will be posting more and feel free to let me know to explain better. Thanks for all your help.

2

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.

3

I can’t speak specifically for iboswife, but I know of a fair number of dialyzors here in the US who want to get the best treatment they can, which means home dialysis, but need help because of vision problems or hand tremors or something of that kind. I’m not sure that those types of patients should be doomed to incenter dialysis just because they can’t see particularly well (and have no co-morbidities). So, in Oz, if you had a diabetic patient who wanted to do nocturnal at home but had vision problems
but did have a spouse who would be willing to do the cannulations
would he be rejected as a candidate for home hemo?

Also, I suspect that clinics demand that a “helper” be trained because of insurance/legal liability reasons. It’s the American Way! My husband will be required to train on NxStage with me, and I am not happy about that because I WANT to do everything myself. Clinics are trying to protect themselves from lawsuits, I’m guessing.

(PS
I gotta tell you
iboswife made an ARM so that she could practice cannulation techniques. Isn’t that the coolest and sweetest thing you’ve ever heard? I hear that most people practice on an orange, but SHE practiced on her own handmade ARM!)

4

While my point about the carer being ‘required’, in my view, remains, your comment that 


“clinics demand that a “helper” be trained because of insurance/legal liability reasons. It’s the American Way! My husband will be required to train on NxStage with me, and I am not happy about that because I WANT to do everything myself. Clinics are trying to protect themselves from lawsuits”


 is the bit I don’t agree with, nor fully understand - but, as you say, ‘it is the American way’ - and who am I to question that.

As for your earlier comment regarding a sight-impaired diabetic or a similarly challenged patient 
 yes, we do assist there - where necessary - via a carer or helper, though it is amazing what even such patients as these can do if encouraged to do so. We often assume that a patient can’t do ‘stuff’ without asking them - or trying them out - and we have been blown away by the courage and ability of patients to do what many think thay cannot 
 so, before committing to a carer-led treatment program for such patients, we would always give the patient a go firts.

I guess my comments re carers are more aimed at the capable patient who is still ‘locked into’ carer-led dialysis when, as in your own case, there is no need.

As for Iboswife making an arm to practice on 
 that’s a 1st for me 
 but, more strength to her arm! What a lady!

Now 
 back to the clinic I am meant to be doing right now 
 !

5

Your so funny MM 
 I tell ya, that “arm” gave me the confidence i surly didnt get practicing on an orange
hehe

And Dr Agar
First off, thank you so very much for your kindly advice. I will say on hubby Bos behalf, he does lots of the other things related to his treatment, as in setting up and having things ready for me, but his vision isnt good enough to even poke the saline so i do the machine etc (and your right, i dont mind :), and he does the setup, tare down clean up 
 and lots of dishes floor moping etc to make up for what he cant do so i’ve been one of the lucky ones in that respect. I read to him nightly about the benifits of nocturnal but he really doesnt want to do it. (BTW hes 68 im 60) He only sleeps for a 4 hour stretch, gets up for a bit and goes back to sleep so for him to be ‘tied’ would be too much for him. AND
 me having a love of peaceful sleep, im too afraid i’d sleep through an alarm or not sleep at all. Soooooo, getting up early and putting every effort to get it stretched out longer, we call it ‘our nocturnal’. After all, it’s dark huh :slight_smile: 
 Im still working on getting him to the 4 hour mark, and pretty sure we’ll succeed with that too. Thanks so much for your time
 I really appreciate it.

6

Its a pleasure! Bo certainly did well for himself way back when 
 he’s a lucky man to have you.

But, I think you know what I was trying to say about the patient ‘doing’ and not being ‘done to’ - at least as much as is possible.

In Bo’s case, it sounds as though he contributes as and where he can.

What matters most is that you have a routine that works for you. As for lengthening out to 4 hrs 
 I am all for that, if it can be worked into your routine and works for you both. I suspect that you already know my views about dialysis duration and frequency well enough - so anything that works to that end, gets my support.

7

Just to be clear, I’m neither an apologist nor a fan of “the American Way”; I’m just trying to explain why I think home dialysis is so “carer” centered, and I may be wrong in my theory, but I don’t think so. I agree that patients can be surprisingly efficient if you let them; it’s the “letting them” that trips up so many clinics here.

You know, iboswife brings up a point that I had not thought about, and that is the variable sleep pattern of people who are older. It must be rare for them to sleep 8 hrs a night in the first place and even harder with tubes coming out of their arms. Dr. Agar, how do you address sleep difficulties in your nocturnal patients? I would guess that getting better dialysis would actually give them a better quality of sleep, but even healthy older people don’t sleep for 8 hrs at a time at night. Is poor sleep a problem with some of your nocturnal patients?

8

Regarding sleep on NHD, although the majority of our 35 NHD patents do tell us that they sleep soundly and they also report better quality and quantity of sleep than that which they had with either CKD (where cramp and restless legs were issues) or other dialysis modalities (especially conventional HD, where cramp and poor quality sleep +/- OSA caused issues), there is a small number 
 interestingly our older males - though I make no more of that than simply the observaton that it is so 
 who struggle with sleep. Most sleep well initially but wake after 4-4.5 hours and then read, lie awake or sit by the bed (still attached) until their treatment ends.

So, yes, sleep is an issue for a small number of our patients. This is despite the earlier data from Andreas Pierratos group about improved quality of sleep - data which is reflected by most, but not all, of our patients.

Despite this, none of our patents would stop NHD. I have asked them - repeatedly - about this and all are adamant that they wouldnt even countenance swapping back.

Do we give them sleeping pills if they wish? 
 yes, I do. And, for most who have trouble, these help. I worried, long and hard, that this might impair their ability to ‘react’ to alarms and/or any issues arising during treatment but this has not translated into a clinical issue.