Bill Peckham asked me a short time ago to dream better dialysis. I have been dreaming.
It breaks down into several bite-sized thoughts:-
1.Patient or receiver issues.
a.The 1st has to be ‘good dialysis’. Ok … what can we do to give you that:-i.The best solute (waste) clearance we can.
… but, for too long we have focused on urea as the marker of this. Believe me (I hope you will), urea isn’t a ‘representative’ waste. Far from it. It isn’t toxic like other substances (phosphate, B2 microglobulin, homocysteine, p-cresol) to name a few, it moves across body surfaces quite differently to ‘the ones that matter’, it ‘comes off’ dependant on the concentration gradient while others move more slowly in a time dependant way … or in rough combinations of concentration and time … and Kt/V? … well, I hate to say it but, it isn’t all that relevant. There is a wonderful graph in the DOPPS data which shows that for ANY given Kt/V, survival (yes, yours) improves as the hours of dialysis increase. This is irrespective of Kt/V. True, survival improves with each incremental rise in Kt/V but it is also true that as Kt/V increases, the survival benefit is MAGNIFIED by time.
Frequency also matters along with time … dammit, both do. More often, but for lesser time is good, longer but at no greater frequency is good … but more often and for longer romps it in.
So, eek out extra sessions … somewhere … and for each of those sessions, the longer you can stick it out … the better.
It really doesn’t matter what (or which) your ‘machine’ is … its what that machine does when it brings your blood and dialysate together against each other, for how long it does that, how often it can do that and … yes … the rate at which each flow (blood and dialysate) in opposite directions against each other. The membrane matters, yes, but not so much as these others – though to remove bigger molecules, the membrane needs to be leakier (high flux) or, coming, even leakier still (to protein) so that protein bound toxins can be removed. I wont even cross into a discussion here of haemodialfiltration (HDF) but … keep an eye on this.
ii.The best volume and BP control we can
…. without stuffing up your blood volume while we do!
Again … time matters here. It really, really does. As a simple example, if you gain 2L and I have 2 hrs to remove that = 1L/hr off! … 2L over 4 hrs = 0.5L/hr off … 2L over 8hrs = 0.25L/hr off. Its simple maths. The slower fluid comes off, the less dialysis-related symptoms. End of story.
And … here’s the magic … remove fluid at >400ml/hr (or thereabouts in most people) and the tissues CANT refill the blood vessels fast enough to keep pace with the removal rate … therefore: blood volume must fall! And … the BP is thus at risk.
So … slow is good. Slow can only be slow if ‘time’ is long and ‘frequency’ is high.
b.Next is … giving you back to your family, employer and leisure time.
Readers at this site are home patients (in the main) … so this is preaching to the converted … but home is the only way this can be done, reliably, certainly, safely, happily, satisfyingly.
Why have we made dialysis seem so hard? I have no idea. Its no bed of roses … seriously, I do know that. But it’s doable at home. Every one of you is testament to that. My patients groan about it (so would I) … but would any willingly return to a facility? … not on your sweet bippy (to coin a Dean Martin term). But … we owe you something … no, the manufacturers do …
2.Manufacturer issues … what can they deliver to you that they aren’t?
a.Yell, scream, write to your congressman, write to the papers, make noise … ‘cos, what you get isn’t what you should have. NxStage has made a huge step to make things easier … and more strength to their arm. But, as with my ‘good dialysis’ thread earlier, they have had to sacrifice some ‘good dialysis’ principles to do so.
Down the track, NxStage Mark ‘X’ or another option … perhaps the Allient Eagle, perhaps some yet to be dreamed of machine … will marry the wished-for options of: reliability, ‘optimal’ solute and ultrafiltration efficiency, cassette-based loading/unloading, trimmed on-off times (a la Aksys), self-prime, self-sterilize (or, like Allient, remove that step altogether), water-wisdom, mobility, portability … all, and more.
b.Are the big-guys really doing this? No, I don’t think so. I wish it were a ‘yes’ but … lets face it, it’s a lip service ‘yes’ so far. Only you, the users, can make the noises they will hear. Do it, by any means you have.
I hear, clearly, your satisfaction with the NxStage ‘step’ … but there is a ladder yet to climb. Encourage them at NxStage, yes, but don’t stop with what you have … the potential improvements that are yet possible stretch out like a road in front of us. Keep walking the road.
- Doctor/Nurse issues … do we deliver services that benefit our patients best?
a. The biggest barrier to advancing ‘good dialysis’ is … yes … us. I really believe that.
We are too comfy. What we currently do works … sort of … so why take on the aggravation of change, work, sweat, battling bureaucracy. Maybe, too, a hip-pocket cut? And so, we sit on our hands, we fail to train for home … many in the US (? most) don’t even offer home HD as a choice (yet all in Oz do). The up-and-comer nephrologists-in-training are not often told that home dialysis is even an option, that it works … that it is, actually, BEST!
4.Funders … do they even know home HD is cheaper while also being better?
All of you home dialysis patients (in the US) know this issue backwards. How long have the few – Chris Blagg, bless him, and others – fought this battle with Congress?
Here, in Oz, we have long accepted home dialysis, we have gazetted NHHD as a funded modality, we have incentivized home dialysis by any means … it’s all a matter of our public record.
There, in the US, you have so much ground yet to cover. At the end of the day … tell your Congressman, your Senator, ‘look to Australia – it works there’!
It’s all enough to rot my socks!
As for those who wanted short posts? Sorry. I have let you down.
And - as for my skills in editing and indenting … oh woe is me.
But, when there is a chance to say what’s on my mind … I fire from the hip. It’s my way.
And, why jump back into the lions den after a recent mauling … 'cos I find I care.