What dialysis choice is ‘best for me’?
You have just been told you need dialysis. Please be aware from the beginning that this website has been developed specifically to inform about only one of the choices in dialysis – nocturnal home haemodialysis (NHHD) –
It must be clearly understood from the very start that NHHD is not for all!
Though we believe NHHD is the best haemodialysis option for those who can manage a machine at home (and we think that is about 1 in 3 of all haemodialysis patients), this will still leave many wondering … what is best - for me?
The main messages to take from the following section will be:
· There are several potentially good options.
· No one single option suits all needs or all people.
· Make sure you look at all possibilities.
· Don’t chose before discussing all potential options with your team.
· See which option allows you best to achieve lifestyle, not just life.
Remember the old dialysis saying …
“You should dialyse to live, not just live to dialyse”
Sadly, many dialysis services do not yet provide all dialysis options.
Hopefully, this will change – but change is slow ... and, for some of us, that change is coming too slowly.
Ensure you have a full discussion of ‘what is best for me’ with your team.
Make sure they discuss ALL the options with you ... and there are many, both in haemodialysis and peritoneal dialysis ... before you make your choice.
Remember, too, that no choice is irreversible.
Few if any patients are or should be limited to one single choice ... yet I believe far too many are!
There are 4 key ingredients in choosing the right dialysis for you:
Use all four ... they will be your ‘courage’ in times ahead!
Choices in dialysis
There are two main choices you must first think about …
1. Do you want to base your care ...
at a dialysis facility
Then, you must chose between the two main ‘types’ (or ‘modalities’) of dialysis
2. Do you want to choose haemodialysis or peritoneal dialysis.
Home or facility
There are arguments both ‘for’ and ‘against’ both home and facility-based care.
1. The arguments ‘for’ Home
Home is familiar... it surrounds you with the things you treasure.
There is no travel time and there are no travel costs involved.
Dialysis can be fitted around your schedule rather than your life being forced to conform to the rigid limitations of a centre-based program.
There is no waiting in a queue (and arguing with others who was 1st) to get connected to a dialysis machine … remember, one nurse has to connect several patients.
Similarly, there is no waiting to get off after dialysis.
At home, you can chose to dialyse longer and more gently if you wish – and you can vary your schedule according to the needs and rhythm of your body.
If there is more fluid to be removed, you can choose to dialyse longer instead of the facility answer (= more aggressive dialysis).
Longer dialysis in your home surrounding is far easier and more ‘bearable’ than in a centre.
You learn to take responsibility (and pride) in your own care.
Self-care nurtures self-worth and self-esteem.
You are not constantly reminded of illness by others around you.
2. The arguments ‘against’ Home
Dialysis and ‘the machine’, by necessity, ‘invades’ your home. In turn, this can place added strains on you and/or your family.
You are isolated from professional care – though you will be very carefully taught how to manage your own care and how to deal with any problems that may arise and, remember … help is always at the end of the phone.
Now and then you may encounter problems that can be a bit scary – though you will be taught how to manage these as they occur and most patients derive deep satisfaction and pride from finding ways to overcome these hurdles.
Self-needling is an undoubted challenge. In Geelong, we insist on our patients self-needling. They do not rely - and we do not allow them to rely - on others to do it for them. It is their dialysis, their problem … and we encourage our patients to take full responsibility for their own care.
The fear of needling is more of a ‘mind-set’ than a technical problem. We find this anxiety can be overcome without too much trouble in almost all patients.
Once a patient can self-needle, the ability to say … ‘I put in my own needles’ … becomes a matter of considerable self-pride.
More importantly … and in truth … no-one looks after nor cares better for a fistula (or can do a better job at needling) than you! Home patients come to guard their fistula carefully – and soon become reluctant to let anyone touch it – other than themselves.
There is absolutely no question that the outcomes of home care – rehabilitation, return to work, friends and family, the ‘zest’ for living … indeed survival itself … are best at home. This has been shown in study upon study.
But … it is also true that those that manage dialysis best in the home are generally younger and fitter … exactly those who might be expected to achieve these outcome goals. This is not a hard and fast rule … we have many patients well into their late 70’s at home … but the average age of home patients is ~5-10 years younger in most home programs when compared to their facility counterparts.
So … which is the chicken and which the egg? This is still the subject of debate and further study.
I am an unabashed, unapologetic enthusiast for home care. In Geelong, we sustain >40% of our total dialysis patient pool at home … currently 22% of all our patients are on home haemodialysis and 18% on home peritoneal dialysis (both manual CAPD and automated PD). Of our haemodialysis patient group alone, 30% are currently at home.
This compares with ~14% in Australia and New Zealand as a whole and about 1% in the US!
I think we have a good balance in our program and that the US, in theirs, does not – though this is a personal view.
In perfecting our home haemodialysis program, however, we took our eye off the PD ‘ball’ and found our numbers on PD falling to 15-18% below the Australian national average of 21%. We are now successfully building this PD number up again (currently around 20% of all our patients) – though not at the expense of our NHHD program but by further improving our home support systems to encourage more to take the ‘home first’ option – whether it be HD or PD.
Choices in Dialysis
Dialysis is divided into two main types:
1. Haemodialysis – where some form of direct connection must be achieved via a set of plastic tubes between your blood stream and a machine … this will be described in detail later on.
2. Peritoneal dialysis – where a permanent tube (or ‘catheter’) is tunnelled through the belly wall into the cavity in which your bowel is curled and your other abdominal organs are sited … think of that same cavity in an animal or fish – you and I are built in just the same way as they are.
Which major option to choose?
Well, it really depends on what you want out of life and what might best fit your lifestyle … and these pages may help you decide.
Of key importance ... dialysis aims to keep you living well and being you. ‘You’ is a mix of work, family, friends in a soup we call ‘lifestyle’. It is this lifestyle you should plan to preserve – as best as possible – and your dialysis choice must optimally allow your lifestyle to continue – as uninterrupted as possible.
1. Conventional facility-based haemodialysis
‘Conventional haemodialysis’ is any close variant of ~4 hrs treatment 3 times each week at a dialysis facility. In many places in the US, however, sessions can be as short as 3.5 hours.
In Australia, the mean dialysis sesional duration is now over 4.5 hours, while in Japan, it commonly exceeds 5 hours/session. The US runs far shorther dialysis sessional times, on the whole, than almost anywhere else. I do not believe that to be a good thing or a thing to be proud of.
Remember as this site will tell you, over and over again, ‘shorter’ is not ‘better’!
Conventional haemodialysis can be done at home, too.
Though 4hrs x 3/week has traditionally been the commonest pattern for home haemodialysis, now-a-days we encourage our home patients to do longer, slower treatment and encourage long overnight whilst-asleep treatment ... nocturnal haemodialysis.
For some at home, shorter, daily and daytime haemodialysis may suit best ... and this is especially so in the US. This is called ‘short, daily’ haemodialysis.
Though both these options (short daily and long nightly) are more efficient and effective treatments than conventional HD, this applies particularly to nocturnal dialysis.
Consider these issues in facility-based care ...
In modern cities with travel times delayed by snarled traffic, most people take at least 20-30 mins (often even more) to travel to a facility for dialysis then another 20-30 mins to travel home again ... and then there’s parking (and its cost), or the hitching of a ride, or dependence for transport on family or friends.
... then there are the inevitable arguments about ‘who arrived first’ and who gets to ‘go on first’ … an argument repeated later when it’s time to ‘get off’.
... then there is the actual ‘getting on’ – the ‘needling’ process – and in a facility, it is rarely the same nurse each time … and some nurses may be better at your needling than others, creating lots of anxiety and, sometimes lots of ill-feeling.
... then, at the end of the treatment, there is the need for haemostasis (the stopping of bleeding) and for blood pressure stabilisation. This can sometimes mean waiting at the unit for ½ to ¾ hour before your homeward journey can even begin.
What all this means is:
A 4 hour treatment isn’t 4 hours of your time!
It’s 4 hours plus … and plus … and plus again!
Home-to-home time can be more like 6-7 hours for most!
Further, though three 4 hour treatments a week does a ‘tolerable job’ of removing waste and excess fluid – it’s all a bit fast and brutal for the body!
In 4 hours, dialysis must remove …
all the waste your body has made over all the time since the last dialysis … and over a weekend, this may be as many as 68 hours.
all the fluid you have taken in … minus any you may be lucky enough to still pass as urine and any you may lose from the skin as sweat or from the lungs or bowel.
This is NOT how your kidneys used to do it. They used to work, behind the scenes, gently, slowly, quietly, continuously.
Ideal dialysis should mimic this pattern as closely as possible.
Conventional haemodialysis does not!
The closer we can come to mirroring how normal kidneys ‘do it’, the better but conventional haemodialysis does not do this.
How do you hold down a job if every second day 6-7 hours of your ‘awake’ time is taken up in a dialysis unit?
How can you hold down a job when the speed and rapidity of the chemical and fluid change forced on you by a limited machine-contact time saps your energies so much that you have only just begun to ‘recover’ from the last treatment when its time to start all over again?
How can you contribute to family, friends and your community?
It important to say clearly here that some facility-based patients do manage all these things remarkably well, despite the rigors of their conventional haemodialysis schedule.
Conventional haemodialysis will still suit many – especially the non-working or the aged and frail.
And ... conventional haemodialysis does extend life – there is no question of that.
And ... some facility-based patients still manage very well and still hold down their jobs – especially if a late-in-the-day shift can be arranged.
Some will actually prefer the thought of every 2nd day away from the machine … the ‘days off’.
You have to decide what sounds and seems best for you!
But … in this decision, you must remember that what is of utmost importance is the quality of the days we live and not just the absolute number of days.
This is where you must ask yourself … am I capable of better?
I have a rule of thumb ...
If you can drive a car … then you can drive a dialysis machine.
and … it is easier to learn!
and … it is also almost certainly safer!
and … home is nicer than a hospital or suburban centre!
At the end of the day, you must weight up all these factors. Though conventional dialysis has kept many millions alive and, for many, it sustains a reasonable quality of life … other options abound.
You do not do yourself justice unless you consider them all.
Your treating team will not do you justice unless it offers, educates and explores all options, both of
Home and facility
HD and PD
... with you and your family before you start dialysis.
2. Short daily Haemodialysis – Facility-based or Home-based
Short daily dialysis is not offered by all services though many of us believe it should be. Though I personally do not believe it is the best dialysis available, it is much better than conventional facility-based haemodialysis.
Ideally, you should be able to choose to have short daily dialysis, should you wish it, either in a facility or at home.
As before ... and I freely and openly admit to being one-eyed in this … if you do choose short daily haemodialysis, it will be at its’ best for you at home!
Indeed … I am of the view that all dialysis does best at home if home is at all possible … and I will never be shaken from this conviction!
Make no mistake, facility-based care is good for many. Indeed, it is likely the only possible choice for the elderly, the frail and the alone or for those with multiple other ‘co-morbidities’ (with other major ‘things’ wrong) ...
But ... facility-based care will never quite match the simplicity and effectiveness of home care where home care is feasible.
Short daily dialysis is 5-7 treatments/week – the more, the better.
The treatments are of shorter duration than those of conventional 4 hours per session, 3 times weekly programs.
Short, daily dialysis is typically, 2 or (better) 2.5 hours 6 days/week.
So … how can 6 x 2hr treatments be better than 3 x 4hr treatments?
Doesn’t 2 x 6 = 3 x 4?
Don’t both add up to 12 hours of dialysis a week.
To understand this, look at the following diagram …
Spend a little time looking at this graph...
Add together the height of the 3 big ‘peaks’. Compare this with the sum of the height of the 6 little ones.
Though the totals are the same, the big peaks are twice as high and the change from the top to the bottom is twice as great.
Add together the width of the bases of the 3 big ‘peaks’ and the width of the bases of the 6 little ones.
They add up to the same width though the width of each little peak is only ½ the width of each big peak.
Look at the area under each triangle. This represents the amount of waste – or the amount of fluid – that needs to be removed during the treatment. The area under the big triangles is much more … yet the time to remove it is not hugely different.
Think of the upstroke of each peak as the amount of waste and/or the amount of fluid that has built up from the end of one treatment to the beginning of the next (the red dotted lines) and which must then be removed during dialysis … or, if you like, in three 4 hr treatments compared to six 2 hr treatments.
The change representing dialysis waste or fluid removal (the height of the peak height to the valley floor = the green dotted lines) in the less frequent treatment schedule is twice as great as that of the more frequent schedule.
This ‘double-the-amount-of-waste-to-remove’ places twice the stress and strain on the chemistry of the body ... and, there is also twice the amount of fluid to remove as well.
MOST of the waste is removed early in the treatment … as the blood concentration of waste falls during treatment, the ‘concentration gradient’ falls too … and the rate of removal slows. Looking at the next graph will show you what I mean …
Hours of dialysis
You can also think of the area under the curve in this second graph as the amount of waste removed.
These graphs both tell you two things
1. The longer the dialysis goes on, the more waste is removed.
2. The more often dialysis is done, the more times the waste removal process is repeated.
Simply put, the more frequent the treatment, the less severe will be the ‘disturbance’ of body chemistry and blood volume as a result of that treatment.
Short, frequent treatment is, simply, gentler.
It is also more efficient – the explanation for this ‘greater efficiency’ is given in the section ‘How dialysis works’.
3. Long, slow, gentle, frequent nocturnal home haemodialysis
I will NOT discuss nocturnal home haemodialysis (from here, called NHHD) at this point as NHHD is the primary focus of this website and, to learn about NHHD, you should read on through the full website.
Suffice to say, I believe it is the best dialysis you can get!
NHHD is home-based care though there are some overnight ‘sleep-over’ units available in Australia and in the US. These, though, still remain few and far between.
Hopefully the various options in NHHD – see this website for detail – will become more widely available in years to come.
You, as the consumer, should push for this.
4. Peritoneal dialysis
PD (as it is known) is a good dialysis choice for many. There are two main types – continuous ambulatory peritoneal dialysis (CAPD) and, in my view, the better option of machine-automated peritoneal dialysis (APD).
There are many websites which deal with this form of dialysis and there are several links to these in the ‘Links’ section at the end of this website. This website will not deal with PD in detail – it is, after all, about NHHD – but in brief …
PD is a gentle, subliminal form of dialysis. It is continuous (CAPD) or largely so (APD). Consider it carefully and seriously as it is a good option for many and it will suit many people very well. Perhaps it most commonly suits non-working, older patients and children best.
PD patients often gain weight.
Some are unhappy about a tube sticking out of their tummy.
Swimming and showering can present particular problems.
It is not the purpose of this website to discuss transplantation. Of course, transplantation may be a clear choice for you and, if so, your team should have discussed this option with you at the start.
Sadly though, transplantation is not possible for all patients … and this includeso many who might wish it was.
Choices … choices … choices
The options outlined above (and there are others variants too) form the backbone of the dialysis choices that should currently be ‘on offer’ through your local dialysis service. Each and every one of these should be discussed in detail with you – or at least considered by – your treating team.
Dialysis should not just be …
rock up at the centre
hold out your arm
have someone else take responsibility for your care
(and your life)
and then do that, every other day
for 4++ hrs each time, for the rest of your life!
That’s no life!
Dialysis can and should be so much more.
Dialysis can (or should) be a positive experience.
Question … Ask … Learn …
Only then can you make an informed choice about the dialysis modality that suits you best.
This website has been written for patients seeking information about nocturnal home haemodialysis (NHHD) in mind. It does not – except in passing – further deal with or mention these other options. This is not because they are no good. Simply, I am writing primarily to inform about the NHHD option.
Links to other websites which discuss the other dialysis options are given in our ‘Links’ section … I would encourage you to use them.
And … good luck!
Authored by Prof John Agar. Copyright © 2012