Hello again
BlizzardUK,
What I had before the exchange was:
one 551 auto, plus humidifier, plus 22mm hose, and
one 561 auto, plus humidifier, plus a second 22mm hose.
As replacement, Philips Respironics sent me:
two boxes, each with a white label on it, and each containing one DreamStation
Auto machine, plus cables, plus one brand new 15mm hose.
AND on the same delivery, they sent me:
another two boxes, each with a blue label on it, and each containing one 'clip-to-a-DreamStation'
humidifier.
So:
four boxes in all, making
two complete auto-level machines.
And oh, yes, two provider guides and two manuals.
As for the bit on the form to do with prescriptions and settings, I ticked the first option – 'Confirm default settings are applicable' – because, to me, these settings can be considered 'applicable'.
A digression.
When I bought my 551, back in 2010, there was no advice given, no personal settings. The retailers seemed to be saying that just by being automatic, the machine would find the right pressure, and no further adjustment would be required.
Shortly after I first began using the machine, I told my GP that I was so doing, because as a matter of clinical ethics, I did not think it right that I should be 'in receipt' of a major form of medical treatment that she did not know about. She deserved to know.
My GP's response was to regularise my position as one of her patients by referring me to the nearest sleep medicine department – for which appointment I only had to wait three weeks (SMDs in the UK were quite new then, and only beginning to see patients in any numbers).
Now the first thing the staff at the SMD said was: they would have to 'sleep study' me a second time – because, legally, they could not accept me as a patient unless they themselves did the study. So I agreed. And the second study agreed with the first, the one I had had done outside the NHS.
Now here's the bit I'm leading up to. In those days the standard machine – and indeed the only machine – that the SMD staff issued was a Philips Respironics fixed-pressure machine, the 451. That was 'what is applicable'.
So I was an oddity for the department at that time. Not only was I 'the patient who arrived at the department already with a diagnosis and machine', but the machine was one of those clever clever ones, one that 'thought for itself'.
Some of the staff had never seen one, and during my early appointments, said staff would make excuses to drop in on me and my nurse, to check it out.
What was also true then is that none of the SMD staff knew how – and with what parameters – to adjust it. The same as I didn't, not then.
And why would we think of adjusting it? The sales and promotional material had implied that an auto would do all the work. Thanks to it's programming, it would find the pressure. The default settings
were what was 'applicable'.
It took two years before before I began to think about refinement. Over those two years, my AHI was typically 8 to 10 – which was a lot better than before I started treatment – and which was accepted at my annual follow-ups as A Result. And I even found one medical website which said, with great authority, that 10 was the right target for the average patient to aim for.
But I wondered if I could do better.
Long story shorter, I found I could. Using Sleepyhead, which I discovered thanks to this website, I found my then average pressure was 8. I wondered: if I set my minimum to just below that, say to 7.5, what effect would that have? Answer: a lot.
It seems to me that auto machines are best used as a kind of hybrid. Fixed pressure to get the machine into that part of pressure range where it can be 'in contention', as they say in sports commentating. And then, free to deploy its algorithms to really close in on the pressure required.
And short of doing full-on
titration (which, by the way, is not readily available in the UK), starting out at the default pressures can be very much 'applicable' – if by 'applicable', you mean 'a good place to start'.
I hope you'll forgive me for my digression. I just thought this was a good opportunity to tell my story. Thanks.
