What dialysis choice is ‘best for me’?

You have just been told you will need dialysis. Although this website has been developed specifically to inform about only one of the choices in dialysis – nocturnal home haemodialysis (or NHHD) – it must be said and clearly understood at the start that NHHD is not for all! Though we believe NHHD to be the best haemodialysis option for those who can manage a machine at home (we think that is up to ~1/3^rd of all haemodialysis patients), that will leave many still wondering … but what’s best for me?

The main messages to take from the following section will be:

· There are a number of potentially good options.

· No one option suits all needs or everyone.

· Make sure you look at all the possibilities.

· Don’t chose before discussing all potential options with your team.

· See which option allows you best to achieve lifestyle, not just life.

And … remember the old dialysis saying …

“Dialyse to live, don’t just live to dialyse”

Sadly, many dialysis services do not yet provide all dialysis options. Hopefully, this will change – but change is slow. Ensure you have a full discussion of ‘what’s best for me’ before you make your choice. Remember, too, that no choice is irreversible. Few if any patients are or should be limited to a single choice.

Imagination, determination, common sense and purpose are key ingredients and … like the Amex ad says … “don’t leave home without them”.

Choices in dialysis

There are two main choices you must first think about …

1. Do you want to base your care at home or in a dialysis facility.

2. Do you want to choose haemodialysis or peritoneal dialysis.

1. Home or facility

There are ‘for’ and ‘against’ arguments for both home and facility-based care.

‘For’ Home

· Home is familiar. It surrounds you with the things you love.

· There is no travel time nor are travel costs involved.

· Dialysis can be fitted around your schedule rather than you having to conform to the always-rigid limitations of a centre-based one.

· There is no waiting in a queue with others to get onto the machine.

· Similarly, there is no waiting to get off.

· You can chose to dialyse longer and more gently if you wish – and you can vary your schedule according to the needs of your body

o if there is more fluid to come off … then dialyse longer and not more aggressively.

o 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 the illness of others around you.

‘Against’ Home

· Dialysis and ‘the machine’, by necessity, ‘invades’ your home. In turn, this can place added strain on you and/or your family.

· You are isolated from professional care – though you are very carefully taught how to manage your own care, how to deal with any problems that may arise and … help is always at the end of the phone.

· Now and then you may encounter problems that can be a bit scary – though you are taught to manage these as they occur and most derive satisfaction and pride from finding ways to overcome these.

· Self-needling is an undoubted challenge. We insist on our patients self-needling – not relying on others to do it for them. The fear of needling is more a mind-set than a technical problem. We find this is 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 cares better for a fistula or can do a better job at needling than you!

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 can manage dialysis in the home are generally the younger and fitter dialysis patients … exactly those who might be expected to achieve these outcome goals.

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 …22% on haemodialysis and 18% on peritoneal dialysis. Of our haemodialysis patient group, >27% are currently at home. This compares to ~13% nationally in Australia and New Zealand and to less than ½ of 1% in the US! I think we have a good balance in our program – and that the US does not, in theirs – though that is a personal view.

In perfecting our home haemodialysis program, however, we took out eye a little off the PD ‘ball’. As our numbers on PD are a little below the Australian national average of 21%, we are working to build this number up again though not at the expense of our NHHD program.

2. Dialysis choice

Dialysis is divided into two main types:

· haemodialysis – where some form of direct connection must be achieved via a set of plastic tubes between your blood stream and a machine.

· Peritoneal dialysis – where a permanent tube (catheter) is put through the belly wall into the cavity in which your bowel is curled … think of that same cavity in an animal or fish – we are no different, you and I.

Which to choose? Well, it really depends on what you want out of life.

Conventional Facility-based haemodialysis

· 4 hrs of treatment 3 times each week at a dialysis facility.

· NOTE: conventional haemodialysis can be done at home, too. Indeed, it has long been the common form of home haemodialysis treatment. Now-a-days though, we encourage our home patients to do long, slow, overnight treatment or, sometimes, short daily haemodialysis – both being are more efficient and effective (particularly nocturnal dialysis).

· In modern cities with travel times snarled by traffic, most people take at least 20-30 mins (often even more) to travel to dialysis then 20-30 mins to travel home again. And then there’s parking (and its cost), or hitching a ride, or dependence on friends or family for transport.

· Then there are the inevitable arguments about ‘who arrived first’ and who ‘goes on first’ … repeated later when it’s ‘getting off’ time.

· Then there is the ‘getting on’ – the ‘needling’ process.

· At the end, there is the need for haemostasis (stopping any bleeding) and blood pressure stabilisation. Sometimes this can mean waiting at the unit for ½ to ¾ hour before the homeward journey can begin.

· What all this means is:

o A 4 hour treatment isn’t 4 hours!

o It’s 4 hours plus, plus and plus again!

o Home-to-home time is more like 6-7 hours for most!

Further, though three 4 hour treatments a week do 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 the body has made over the cumulative hours since the last dialysis (over a weekend, this may be as much 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 lose as losses 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 as closely as possible. Conventional haemodialysis does not!

The closer we can come to mirroring how normal kidneys ‘do it’, the better. Conventional haemodialysis does not do this.

Furthermore:

· 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 could you hold down a job if the speed and rapidity of chemical and fluid change forced by the limited machine-contact hours saps you 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?

Now – it important to say that some patients manage all these things despite the rigors of a conventional haemodialysis schedule.

· Conventional haemodialysis still suits many – especially the non-working or the aged and frail.

· And, conventional haemodialysis does extend life – there is no question of that.

· And, some patients manage well, hold down jobs – especially if a late-in-the-day shift can be arranged.

· And, some actually prefer the thought of every 2nd day away from the machine … the ‘days off’.

What is important, though, is the quality of the days we live as well as absolute number of days lived. This is where you must ask yourself … am I capable of more?

I have a rule of thumb ...

· If you can drive a car … then you can drive a dialysis machine.

o and … it is easier to learn!

o and … it is also almost certainly safer!

o 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, sustains a reasonable quality of life … other options abound.

Short daily Haemodialysis – Facility-based or Home-based

Short daily dialysis is not offered by all services. Many of us believe it should be. 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) … short daily haemodialysis also does best at home!

Indeed … all dialysis does best at home if at all possible! I will never be shaken from this conviction.

Yes, facility-based care is good. Indeed, it is essential for the older, the frail, the alone, those with multiple other ‘co-morbidities’ (other major ‘things wrong’) … but it never quite matches the simplicity and effectiveness of home care.

Short daily dialysis is 5-7 treatments/week – though the more, the better – but the treatments are of shorter duration than in conventional 4 hour, 3 times weekly programs. Short daily dialysis, typically, is 2-2.5 hours 6 days per week.

So … how can that be better than three 4hour treatments?

Doesn’t 2 x 6 = 3 x 4? Both give 12 hours of dialysis a week.

To understand this, look at the following diagram …

Add together the height of the 3 big ‘peaks’ and compare with the sum of the height of the 6 little ones. The totals are the same though the big peaks are twice as high and the change from top to bottom 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 ½ the width of each big peak.

Think of these peaks being the amount of waste and the amount of fluid that has built up and which must then be removed during dialysis … or, if you like, three 4 hour treatments compared to six 2 hour treatments. The change (the peak height to valley floor) that must occur in the less frequent treatment schedule is twice as great. This places twice the stress and strain on the chemistry of the body while there is also twice the amount of fluid to remove.

Simply, the more frequent the treatment, the less the ‘disturbance’ of body chemistry and blood volume as a result.

Short, frequent treatment is simply gentler.

It is also more efficient – the explanation for this is seen in the section ‘How dialysis works’.

Long, slow, gentle, frequent nocturnal home haemodialysis

I will NOT discuss NHHD here as NHHD is the primary focus of this website and to learn about NHHD you should read the full website.

Suffice to say, I believe it is the best dialysis you can get – and, again, it is home-based care though some overnight sleep-over units are now available in Australia and in the US … but these are still few and far between.

Hopefully the various options in NHHD – see the website for detail – will become more widely available in years to come. You, as the consumer, should push for this.

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 with links to these in the ‘links’ section of this website.

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 suits lots of people very well – though perhaps most commonly it suits the non-working, older patients and children.

· PD is always ideally home based.

· It requires no needles.

· It is simple to learn and quick to master.

· It requires little technical skill or understanding of machinery.

· It can be carried out during sleep (APD).

· It usually needs little or no fluid or dietary restriction.

But …

· There are the risks (low but ever present) of peritonitis … in Geelong, this risk currently runs at 1 episode per 42 patient months of treatment.

· If it occurs, PD-related peritonitis is usually easily treatable – but it is a problem nonetheless.

· PD patients often gain weight.

· Some patients have a ’thing’ about a catheter (tube) forever sticking out of their belly wall.

· Swimming and showering – though possible – can present particular problems.

· Finally, the technique does not have a good record of ‘lasting’ for a long time … the lining of the inside of the belly cavity (the peritoneum) ‘wears out’ after a while – often after as little as 2 or 3 years. Then haemodialysis becomes the only option left – apart, of course, from transplantation if this is a viable option for you. Your team will have discussed this with you. Sadly though, transplantation is not possible for as many as might wish it.

Choices … choices … choices

The options outlined above (and others too) form the backbone of the dialysis choices that should currently be on offer through your local dialysis service.

Dialysis is not just … “rock up at the centre, hold out your arm, have someone else take responsibility for your care (and your life) – and do that, every other day for 4 hours+++ at a time – and do it for the rest of your life”!

Dialysis is so much more.

Question … Ask … Learn … only then can you make informed choices about the dialysis modality that suits you best.

This website has been written for patients seeking information about nocturnal home haemodialysis in mind. It does not – except in passing – deal with or further mention these other options.

Links to other websites which discuss the other options are given in our ‘links’ section … I encourage you to use them.

And … good luck!