Getting used to dialysis

Does the human body ever really “get used to” dialysis?

I’ve come across a lot of posts recently over on IHD where new dialyzors have been told by clinic staff that “you’ll get used to it.” This is the sort of fobbing off that patients get when they are upset and staff doesn’t really have anything reassuring to say because there really ISN’T anything reasssuring to say, so they make something up. But it has made me wonder, does the human body ever acclimatize to the trauma that is standard hemodialysis (as practiced in the US)? If so, how does this happen?

‘You’ll get used to it’ … is such an easy thing for a staff member to say yet it is so hard for a dialyzor to do - if ever they do.

And yes, it is a ‘saying’ that I hear a lot – I even hear myself saying it – because, as you say, there often really isn’t anything reassuring to say to allay the full frontal hit of fear and despair that can accompany the start of dialysis - especially if there has been inadequate education, preparation and de-mystification.

But, we are all human – this includes nurses and doctors too = a fact that is sometimes forgotten – and there are times where something has to be said when there is nothing good or easy to say. So we retreat to the trite or to what must seem like a ‘fob off’ but which, in truth, is said simply because something must be, yet there is no phrase that rings true.

‘Getting used to it’ runs at several levels:

First, there is the difficulty that many new dialyzors have in accepting (finally … if a long CKD run-in – or at all … if a newly diagnosed CKD without the benefits of an active, supportive pre-dialysis education program) that dialysis is now part of their lives.

This ‘accepting’ phase can be long and difficult for some – but, in the long run, most (though not all) dialyzors do come to a measure of acceptance and, with that acceptance comes the ‘getting used to it’.

Second, there are the physical adjustments – partly lifestyle change, partly habit-changing – that are necessary as the dialyzor ‘gets used to it’. These include:

(i) the regimentation of life-style that accompanies the rigidity of dialysis scheduling – clearly worse for the centre-based patient compared to the (relative) freedom of the home dialyzor … remembering that the home dialyzor (HD or PD) must go through a regimented training phase before gaining that (relative) scheduling freedom.

(ii) the limitations of diet and fluid intake that are imposed on most dialyzors from the outset and which many never ‘get used to’, no matter how hard they try. Again, the freedoms of diet and fluid that accompany the long, slow, frequent home regimens of nocturnal dialysis and the relative but not so certain freedoms of shorter hour programs and/or PD are a huge plus for home-based dialyzors … but, sadly, home dialyzors are the few, and not the many.

We believe (and attain in many centres here in Australia - including our own) that home dialysis is possible for at least 50% of patients in most programs. OK … this may not be so for areas of extensive low socioeconomic burdens, those with educational hardships or where ethnic diversity is pronounced, but despite these hurdles, many of Australia’s largest services exceed 50% of patients at home with one very large service at >60% home penetrance – albeit the majority in that service are on home PD (mainly APD). Our own service manages 50% but here, our home HD program exceeds our PD program.

Then there is the biochemical ‘getting used to it’ … the rapid biochemical changes that accompany dialysis … and the shorter and more brutal the dialysis, the greater the quantum biochemical change in a short time … and the less ‘used to it’ one becomes (or can become).

These sudden shifts occur (among other changes) in potassium, magnesium and sodium … with the result of these effects occurring at the motor end-plate – that junction between the neuronal axon (nerve cell) and muscle cell – that is thought to be the cause of dialysis-related cramp. Potassium shifts can also trigger dialysis-related rhythm disturbances in the heart. Rapid shifts (ie: the removal of) fluid lead to blood pressure instablility, nausea, vomiting and ‘flats’ … the list of physiological (or, better, pathophysiological) changes that occur during dialysis is long.

All are minimized by slower, gentler, more frequent, less destabilizing dialysis – but, sadly, this is not the usual dialysis delivery mode in the US - as was noted in your question - where the mean dialysis time is still < 220 minutes. In Australia, the mean dialysis run-time is ~275 minutes and in Japan, it is even longer. Oddly, there appears to be a parallel between dialysis time and dialysis morbidity/mortality that is hard to escape.

There are many more examples of ‘getting used to it’ … or ‘not getting used to it’ … that become (or never become) accepted. Just think of: the hassles (and costs) of travel, parking, waiting, queuing, recovery time, the myriad limitations of normality that each and every dialyzor must ‘get used to’ … and do they ever? I don’t know.

I only know that if it were me, I’d probably be much like the subject in Dylan Thomas’s brilliant poem … I, too, would likely find it very difficult to ‘go gently into the good night’ of dialysis and would, too, probably find myself ‘raging, raging against the dying of the light’.

Yet it is what we (I too) ask of our patients. And, tell them they’ll ‘get used to it’.

So … ‘getting used to it’? I suspect those who value their individuality and freedoms never quite do – no matter how much we say ‘you’ll get used to it’.

I understand that there are many levels of “getting used to it”, but I was asking purely from a biomechanical point of view. I’ve had many, many years of getting used to the idea of dialysis, and I have positioned myself as best I can to make the transition onto dialysis as easy for me as possible, but it is very difficult to fully prepare yourself for something you have yet to experience.

Why tell a patient that he’ll “get used to it” if it may well not be true? How do you know if someone will ever get used to it? You don’t know, so why say that? I’m sure most staff are smart enough and compassionate enough to say something that won’t merely perpetuate a lie. Perhaps they can be taught to say something like, “You have a whole team of people here to help you.” Or, “I know this is all shockingly new, but are here to keep you as healthy as possible.”

Might I suggest that the rage against the dying of the light could be harnessed to insist upon better dialysis? Rage can serve a useful purpose. I know it has for me. “Going gently into the good night” means, to me, being a lemming and not insisting upon the best dialysis possible. Raging against the dying of the light means not letting yourself get used to sub-optimal dialysis. But that’s just me.

I am hoping that my rage will not surface the first time some tech tells me that I’ll “get used to it.” But I won’t make any promises.

So, I am assuming that no, the human body doesn’t ever acclimatize to the repeated trauma that is dialysis. Maybe the human mind finds some modicum of acceptance, but the body does not. Would that be a fair thing to say?

It would, MooseMum, it would.

Re your dialysis patients who, for whatever reason, have to have dialysis in clinic…do they have better access to more frequent dialysis than clinic patients here in the US? Do most clinics in Australia open every day so that there is not this long interdialytic period that is so dangerous? Is inclinic nocturnal hemo widely available? How is your in-clinic hemo treatment different from that which is available to US patients?

I feel like I have answered these questions many times here before … but … here it is, once more …

Re your dialysis patients who, for whatever reason, have to have dialysis in clinic … Do they have better access to more frequent dialysis than clinic patients here in the US?

No! Sadly, the 4 x 3 model … which really originated from a US Senate decision (ie: an administrative + financial one) back in 1972 and, in modern parlance, went ‘viral’ around the world to become ‘the standard’ … remains with us today as ‘conventional dialysis’.

Here in Australia and New Zealand, we have long recognized the advantages of home dialysis … and I won’t go through them yet again except to say: freedom of access to longer, more patient-friendly dialysis hours, to more frequent dialysis sessions … etc.

This has led to ANZ having a logarithmically higher home dialysis ‘ethic’ than elsewhere in the world. We ARE the outliers – but we are happy to be so. It has allowed more of our patients to access non-facility-based care.

But – our facility-based patients still have the long break. They still have to weather ‘weekends’, they are still exposed to the ‘killer break’ that Carl Kjellstrand so long ago described, so many times jhas emphasized, and so often has spoken of (with passion, conviction and pleading for it to be recognised) at every meeting he has been to … but, oddly, which seems to have only just been ‘discovered’ by ‘the community’ in a paper in the NEJM (2011: 365: 1099-1107) … sighs … doesn’t it rot your socks!

Our governments (all governments) were quick to embrace 3 x 4 all those years ago.

To now go to a facility-based ‘alternate day regimen’ would mean Sunday dialysis! Staff wages here – and likely elsewhere – are higher on Sundays. The costs of alternate day dialysis would add 1/7th more, every 2 weeks, to the costs of dialysis consumables and even more to the costs of wage and salaries. Doctors also like to have occasional weekends off (even this one!) … and so are also ‘scarcer’ at weekends.

No governments – neither yours nor ours – show any enthusiasm to fund the extra day per week.

Here, where all dialysis is ‘free’ (to the population, but not to the government), it has been just as difficult (no – it has been impossible) to shift the juggernaut set in motion all those years ago in 1972 that became 3 x 4.

That, Michelle, is the way of politics, funding, and entrenched positions around the world.

A small number of our (local) patients … four years ago, more than ½ the patients who were on short daily clinic-based dialysis (2.5-3.0 hr x 6/week) in the whole of Australia (12/22 at that time) were here in Geelong. I haven’t looked at the data for this since but don’t think it has changed much!

So … no … our (clinic) patients do not have better access to more frequent dialysis than clinic patients in the US?

Do most clinics in Australia open every day so that there is not this long interdialytic period that is so dangerous?

As above … no. Would that it were different – but it isn’t.

And, it’s not likely to change in the foreseeable future – even though Australia is the by far and away the most economically secure and prosperous of all western nations in the current parlous state of world finance and is not facing the problems you have in Europe and the US. Despite our economic security, it is not something that our goverment is likely to consider any time soon.

Is in-clinic nocturnal hemo widely available?

No … it is NOT done here. As I have often written here, we send our patients home! There was a brief ‘experiment’ with in-facility NHD in Queensland (2006-2009) but it ‘fell over’ within a couple of years and that program has reverted to home-based care.

There are some moves to rekindle interest and enthusiasm for small in-centre NHD programs here and there … but none have gotten off the ground to date. NHD is, here, done at home.

We have some mobile dialysis clinics happening – and that’s exciting – but its’ too early yet to know how successful these will be.

How is your in-clinic hemo treatment different from that which is available to US patients?

As often stated here at this site … but i will say it again … we dialyse longer.

The mean dialysis time here is 275 minutes. In Japan, it is even longer.

You dialyse nationally for < 220 minutes (more like 210). We don’t use Kt/V-based dialysis. All dialysis staff are all trained nurses – most with dialysis/renal certification. The ratio is 3.5 patients/nurse. Our trainee nephrologists must – by curriculum – train in dialysis, in PD, in HD and in home care (both HD and PD).

All care is provided by hospital–based, academically-linked services, It is not-for-profit care. Company-run dialysis (ie: for profit) is rare here … and the few clinics that are run, struggle to make ends meet on the reimbursements paid by government. I have written about these differences here many times … but there (again) are the major differences though the list of differences could continue.

Again, it would be cool if there were someway that Dori and Brian at HDC could file or subject-categorise some of these recurring answers to lessen my writing time … its just been a BIIIG week here! … but I sometimes have that creeping feeling that I have said all this before.

That is the problem with the answering of individual questions for individual patients - the questions are often the same as those that have been asked before. While for you, the question (and the answer) may seem new and fresh, for me the answers can seem a little repetetive. I have raised the FAQ concept with Dori before - maybe I need to again. Looking back, there have now been 124 separate threads with 711 posts (1/2 of which have presumably been mine) … and as you know, I tend to give long answers! …

My apologies.

You never have to apologise, MooseMum … never!

It has been a long week here! but your questions are all valid and good questions. Sometimes, though, keeping up with a full time practice, a unit, lots of speaking stuff, papers, abstracts, HDC’s Q&A … and my family … gets to be a lot. However, I will always answer as well and as fully as I can. I diodnt mean to sound tetchy! Sorry.

Keep asking. Keep inquiring. Keep learning. Keep growing. For my part, I will always keep answering, keep being as honest in my answers as I can, keep teaching … and through these, also keep growing.

JA (as here I am known!)

I should have used the “search” function; that’s what it’s there for! Yes, an FAQ section would be good. I’m sure I won’t be the last person to repeat these questions. As more and more people discover the benefits of home dialysis, there will be more and more repetitive questions, so for the sake of your sanity, some of the FAQs and replies should perhaps be highlighted in some way. I’m sure Dori can think of something.

Hi Moosemom–yes, like the upcoming dialysis book as a reference folks can hang onto! Can you contact me about that? I tried to email you but it bounced. :slight_smile:

You are right, I do value my freedom and individuality and I will never surrender those precious gifts.