Am I suited to
Nocturnal Home Haemodialysis?
‘Am I suited to NHHD?’
This question is never simple to answer as clearly there will be positives – and negatives – to managing home-based haemodialysis.
I shall try to put the arguments ‘for’ and ‘against’ in as balanced a way as I can but, in the end …
We are all different
We all have different physical and mental strengths and weaknesses
Our homes and lives are all structured differently and uniquely
Our families and friends all have different needs
We all react, in ways unique to ourselves, to the challenges, hopes and fears that confront us
I have a clear bias to home haemodialysis, where it is possible
It is because of this individuality, this unique mix of circumstance and personality that makes you, ‘you’ and me, ‘me’ … that NO advice given through a general website can EVER be ‘tailor-made’ for YOU, and for you alone!
This is one of the great ‘traps’ of the Internet – that we might interpret or believe internet ‘advice’ when that advice is being given without any knowledge of us, as an individual.
Please, do not fall into that trap with this site. It is certainly not my intention that you should.
This said and understood, I can give some general pointers to kick-start a discussion with your treating team.
Remember, though, that none of these are meant as specific advice … to you, personally.
No website can give such advice … unless it is given with full knowledge of you as a person, of you as you fit within your social network and life circumstance.
Clearly, in a general website, this cannot be the case.
Keys to your suitability for NHHD
1. You must want to take control of your own care
2. You must be physically capable of self care
3. You must be mentally able to learn to run your own machine
4. You must be emotionally stable and able to make decisions
This said and understood, I firmly believe that many more dialysis patients than most health professionals would care to admit, could and would do a far better job of self-care than the care that is given to them in facility-based care.
This is not meant as a ‘put-down’ to facility staff … simply, self-care is the care of one – and that one is you – while facility care means the sharing and diluting of care (and time) among many.
In my view, we have inadvertently robbed many of our patients of self-belief, self-assurance and self-reliance
I feel sad to think that I have also been guilty of exactly that.
I believe a dialysis patient, well trained and well supported at home, is infinitely better off than any facility-based patient.
However … not all patients are suitable, not by any stretch of imagination.
I believe about 1/3rd of current haemodialysis patients are suited to home. I suspect this to be broadly true across the full haemodialysis spectrum.
Some services have a higher number of frail or disabled patients – others, lower.
However, in ALL services, I believe ALL patients MUST be …
1. Aware that home dialysis exists and is available
2. Given the courtesy of the option of home care
3. Given dispassionate advice re the good and bad aspects of both home-based and facility-based care
4. Carefully assessed under guideline criteria
You may think I am being overly simplistic when I say what follows, but, in truth, I believe it is so …
… if you drive, or are capable of driving, a motorcar – you are, in my view, an automatic candidate for home dialysis … or, at the least, you should be assessed for home-based care
No ‘ifs’, no ‘buts’.
So … if you drive, consider home dialysis.
This is NOT meant to imply that if you do not drive, you cannot do home haemodialysis … clearly, many can.
Let’s think why I have said this. To drive a car, you must be able to:
… see the road and road conditions
… see and react with common sense to others in front, behind and to both sides
… manage to steer and to use your feet and hands independently
… interpret dials and gauges
… take emergency action
… have adequate dexterity and speed of thought
… exercise spatial judgment and accuracy
A car ‘cockpit’
Compare the complexity of this ‘cockpit’ with the patient interface screens of two commercially available haemodialysis machines …
A NxStage ‘cockpit’
A Fresenius 2008H ‘cockpit’
In comparison … the two dialysis machines are certainly no more complex – and probably considerably simpler than the motor car.
To drive a car, you must have:
… adequate vision
… reasonable dual-handed dexterity
… an ability to understand concepts
… a reasonable ability to multi-task
… good reaction time
… self belief
… a desire for independence
These are the same qualities needed for successful ‘driving’ of a dialysis machine. If any – but not necessarily all – of these ‘fit’ you … then you should, at the very least, be offered information about and the option of ‘training for home’ so you can make up your own mind.
So … after all that … am I suitable for NHHD?
The following is a list of some of the things you need to think about and discuss with your treating team …
Are you, your family and your treating team motivated to ‘get you home’ and ‘keep you home’? Joint motivation is vital for you to succeed at home care and for your team to support you there.
Are you – or do you wish to be – employed? Home care allows greater flexibility of dialysis hours and frequency and makes sustaining full or part-time work easier.
Education and Learning?
Longer and more frequent dialysis is reported to allow clearer thinking and better concentration. For the student, NHHD makes ‘learning’ sense.
Carers – for children, elders or the disabled
If you have a carer responsibility for others in your immediate family, being away from home to dialyse at a facility makes that care-giving task very difficult while NHHD allows you to be free to help when it is needed through each day.
If you are pregnant or wish to consider a pregnancy, NHHD is potentially the most effective dialysis to allow this.
Fluids and Food
If you struggle to control the fluid and dietary limitations of standard HD, then NHHD allows fluid and dietary freedom.
If you live far away from a centre or travel is difficult or costly, home care has clear time, convenience and cost implications for you.
Inadequate standard dialysis
Many cannot achieve adequate dialysis with the routine thrice weekly limited hour dialysis provided by most facilities. The big or the muscular may need more dialysis than is possible at a centre and benefit immeasurably from the longer, more frequent dialysis made possible by home-based care.
Complications of standard therapy
Many of the complications of standard dialysis result from or are aggravated by chronic under-dialysis – like enlargement of the heart (LVH), amyloidosis and neuropathy – and can be improved by the more intensive dialysis possible only at home.
Pets and animals
Pets at home can be a risk factor for successful home dialysis – especially if they cannot be excluded from the dialysis area. Cats and birds seem, to us, to be particularly troublesome.
Those who are blind or have limited vision may struggle at home – though in our NHHD program, a <10% vision diabetic has self-needled successfully for >8 years at home. Though it can be done, it certainly increases the difficulty of home-based care.
For those with poor hearing, light and vibratory alarms are possible but they are not as ‘certain’ as sound alarms.
Literacy and where your native language is different to your carers
Plenty of illiterate people drive by using the signs and pictures by the roadside. Dialysis is taught by talking, showing and watching – not so much by reading manuals. Our manuals are pictorial first and words last. Though teaching illiterate patients is not at all impossible, it does slow the process and some services may not be able to manage the extra load of doing so.
Low socio-economic status
This should NOT, of itself, be a factor – and here in Australia where dialysis is free to all, it is not – but if a patient must pay, home-based care may become impossible. Even here, where home dialysis is fully funded, there remain two items unfunded: power and water. In my own Australian state of Victoria, water costs are assisted but still not totally covered. This is about to change, though, and all out-of-pocket expenses should soon be covered under a new funding formula.
This can create some difficulties as some landlords can object to the added plumbing required for home installations. In the US, however, where machines like NxStage can remove the need for plumbing, such issues might not be so important.
It should go without saying that good home hygiene is essential to minimize any infection risks. Close attention to this is very important and if home hygiene is poor, home dialysis may not be such a good idea.
Do you have access to quality ‘city’ or ‘town’ water supplies or are you dependant only or the rain that falls on your roof, collects in your dam or that you raise from bores, artesian wells or subterranean aquifers? If the latter, this may make NHHD either difficult, expensive or both.
Alcohol and drug use or erratic behavior at home
Mixing a home medical care like dialysis with any of these can be disastrous. Disruptive or unpredictable behavior, especially if it is fueled by alcohol or drug abuse, places the health and life of a home-based patient in jeopardy. If there is a significant risk of this, it would be an unacceptable self-treatment environment for any dialysis patient.
Though this list is not exhaustive, it does raise some of the factors for and against home care. This list gives you a starting point to evaluate, with your managing team, whether home dialysis – and in particular, NHHD – might be for you.
Authored by Prof John Agar. Copyright © 2012