BIPAP A40 laughing at me!.......in the UK

[Hidunc]

I apologise if this has been covered, but hard to know what to search...
I am a complete novice to the notion of assisted overnight breathing. Long story short, following an overnight oxygenation monitoring, and a long phone conversation with my local hospital sleep clinic, I have been identified as averaging 10 apnoeas an hour, so prescribed a BIPAP A40. It came with the technical manual but no personal instructions. I think I can assume, as it has an SD inserted, that it has been pre-programmed, so, once I'd played with the dreamwear nose/mouth half mask and got it to fit snugly I turned on the machine > 'therapy' > 'OK', and it started blowing air into me, inflating my cheeks and popping my ears . It was about then that I realised that was my cue to breathe in. OK, then breathe out. OK so far. A few more breaths and it was OK -ish, though the machine wanted to breathe far more than I did.
So I gave it about 5 minutes, and got into the rhythm, when it started what I can only describe as silent laughter at me. Kind of... Hh-Hh-Hh-Hh-Hh- - well, you get the picture? I though it was maybe on a learning curve, so I persevered, and it stopped after a minute or two. It soon started again though, and did it more than not, in several episodes over the next 10 minutes, so I turned it off.
Last night I turned it on without donning the mask, and it did the same, so I recorded it on my phone. Stop, start, as before. Without wearing the mask, the chuffing can't be heard on the inhale mode, just the exhale. Wearing the mask, it is stronger on the exhale but still detectable on the inhale.
It is a brand new machine, set to AVAP-AE mode [ though it can provide all modes]
As it's Christmas and Covid, I can't contact anyone at the mo, so just trying to gain insight as to whether it's the machine or me, though I'm trying to follow every beat of the machine, and it does it even without me, exactly the same. Only MINOR leaks on mask, by the way.
TIA
Happy C-word

[Pugsy]

Are you in the UK somewhere?

Do you know what your official diagnosis was? Get the report and read it. Does it say obstructive sleep apnea or central sleep apnea or complex sleep apnea? Any other health issues going on that involve the lungs? Like COPD or neuromuscular breathing/lung issues?

You got a very special kind of bilevel machine that is normally not given out for just plain jane OSA.
It won't ever "learn" what you want or need. You have to learn to accept the settings.
Do you know how to get into the clinical setup menu area to see what all those settings are?

What is the model number on the bottom of the blower unit?
Sounds like you probably have some sort of Respironics machine. Need to know exact model number to know if available software will work with it or not.

[Pugsy]

Go here and request the clinical/provider manual for your machine
https://www.apneaboard.com/adjust-cpap- ... tup-manual
instructions are about 2/3 down the page. You get it via email

I suspect this is your machine
Respironics PR System One BiPAP A40

[Hidunc]

Yes it's the BIPAP A40, and no, I don't have access to the full report; it's all happened very quickly and under Covid restrictions, so not even been to hosp. Yes, various other complexities, pneumonectomy, mitral valve replacement, years of lethargy, 2-year recovery period from weird Hosp-acquired resp infection, old age, etc
I expect the full report will be available when / if I get a face-to-face, but it won't mean much to me. I have read and kinda understood the 80-page technical manual for the machine. Instructions for how to unlock full settings is on the first page. Once I sussed which mode had been programmed in I tried adjusting the ramp, rise time and breath rate but although the machine is unlocked they seem to have been pre-programmed via SD, as whatever adjustments I make are ignored.
At first I thought the machine may be using pulsing as a kind of nudge, but however I breathe makes no difference, and it just makes breathing uncomfortable like a rapid-fire silent laugh.

[Pugsy]

While it is possible they programed the settings into the SD card and it will override any changes you make....that can be fixed simply by erasing the SD card and then putting it back in the machine. This won't change the settings on the machine either but it will eliminate any SD card overriding of any changes you make.
I would be surprised if they used the SD card and the Encore software to make settings in such a manner as it involves a lot more work but maybe they did.

So first thing I would do is erase the damn card and see what happens....like put it back in the machine and try to make a minor change like with the ramp and see if the change will stick. Any data that is on the machine from your use will go right back on the SD card.

This type of machine forces a breath whether you want it or not and not always at a rate that is comfortable for your own respiration pattern.

Sounds like you might need to adjust the breaths per minute setting a bit but I am not very familiar with this model machine at all...and we don't know what mode you are in which affects the choices you see and what those choices do.

[rick blaine]

Hi Hidunc,

Just to clarify, at the hospital that's treating you and has sent you home with this machine, are you being seen by a department with the name 'Lung Function' or 'Chest Medicine' or something like that?

Or are you being seen by the Sleep Medicine department, which officially comes under Lung Function, etc, but is often in a separate part of the building, and has its own 'patient intake' and 'treatment pathway'?

The reason I ask is that, in many NHS hospitals that's how it is now, in response to the increase in numbers of people being referred for possible sleep apnea. In my area, there's the main department called 'Lung Function' and there's a sub-department within LF called 'sleep medicine'.

And broadly speaking, there's two kinds of condition – and two kinds of machine that people are sent home with.

When people have 'just' sleep apnea (and that is a bit of a simplification), they get given some kind of CPAP machine. Its job is to use pressure to hold the airway open, and the patient does their own breathing.

When people have various kinds of failure to breathe or failure to breathe effectively, they get some kind of ventilator, a machine that – when needed – will do some or all of the breathing for you. Especially the breathing in.

Has nobody at the hospital explained this to you?

The 'laughing' you speak of is, AFAIK, the machine trying to create an in-breath. That's what it's meant to do.

Your job is to let it.

The bit that comes next is: what adjustments need to be made to the machine so that it 'works with you'?

Usually the medical staff at the hospital make those. I know that staff at NHS hospitals are under great pressure at the moment, with staff being seconded to 'the virus-stream' - ie, one of the two pathways that most A&E departments have been split into. But they must have given you some contact number.

As to changing the settings, I don't know how that's done on the machine you've been given, but usually, the settings most ventilators use are locked in, in the clinician's area. And it may be that, if you change them, the machine double checks with the SD card, and if there is any discrepancy, it defaults to what's on the SD card.

In which case, as Pugsy says, you can try wiping the card. Or you can put in a fresh card (if you have one). And then maybe change the settings.

There is also the possibility that the settings which the machine has ARE what you clinically need ... and the task for you is to adjust to them.

It might help if you could talk to someone from whichever department is seeing you. But I suspect, knowing the NHS, that there will be no-one in the department near a phone till the 4th of January.

As an outside chance, you could call 111 and ask the person doing triage if there is anyone, repeat anyone, that they can get on the phone to advise you. They almost certainly won't be able to find someone right away. And it will probably take several hours before a doctor can call you back.

Best I can offer. I, for one, don't know enough about this machine to advise you.

[Hidunc]

Thanks, Rick
The machine was sent direct from Philips, in Chichester, ordered through the sleep clinic at the Norfolk and Norwich hospital. Sleep apnoea / COPD was recorded on an overnight test [worn at home] also sent from Philips.
The doctor who rang me to discuss it seems to be very thorough and experienced, having been there a fair time, previously in Paris and Milan, and he knows 'my' cardiologist and respiratory specialists and has discussed with them. [30 years ago I had a lung out and 2 years ago a metal mitral valve fitted, which was followed by a dose of pneumonia from which I feel I have never recovered]
Sleep was the last step in trying to find causes for my lethargy, low mood and tiredness, having discounted thyroid issues and drug regimes by experimentation, and chest issues with various scans and tests.
Of the 6 therapy modes available on the machine it is set at AVAPS-AE which, from what I've read, makes sense, and I can see all the 18 parameters which can be adjusted for this mode, but I certainly don't understand their effects and interactions enough to make any informed choices about any but a few, eg rise time, tidal volume. But although I can alter the settings on-screen, they do not hold when 'OK'd.
The huffing laughter is more noticeable on exhalation and waxes and wanes over several minutes, in cycles of 4-5 minutes. I don't think it's a prompt as I've noticed it starting halfway through an inhalation or an exhalation, as well as keeping the same wax/wane when the mask is off and the machine is left running.
Heigh-ho, I shall spend tomorrow morning in a holding queue I spect

[rick blaine]

Hi Hidunc,

Thanks for all that info. All of what you say does re-inforce my sense that you are not being seen by the sleep-medicine department, and you certainly aren't a 'run-of-the-mill' sleep apnea patient.

And given the fact that you are being treated by a senior physician, it is unlikely that the 'prescription' with which your machine has been set is not the result of a fully-considered opinion, and it is equally unlikely that it is not appropriate for you.

So, given what you say about the 'huffing' and 'chuffing' happening in both the exhale and inhale, it may be that it's the machine which is at fault – even if it is new, and even if it has been sent to you direct from Philips Respironics UK.

So, as another long shot, you might call them – Philips Respironics UK – obviously not today, because it's a public holiday, but either Tuesday or Wednesday or Thursday – with the objective of getting someone from the technical department to listen over the phone to the noise coming from 'your' machine.

Now, to make it absolutely clear, under UK law, the technical staff cannot 'treat' you and you're not asking them to, nor expecting them to. So, for example, you are not asking them to change your prescription, nor aid you in changing it yourself.

You would just like to know if, in their opinion, the machine sounds faulty.

The number is 0800 130 0844, and the person who answers the phone will probably first ask you if you're calling from the NHS, or are a member of the public. And you'll need to be careful when you say, 'No, I'm a patient,' and be quick to add that you are not asking for treatment ... you just need some information.

You might mention that it's the BiPAP A40 – which, as far as you know, was specially-ordered for you ....

And since it does seem to you to be not working properly, you need to know if it is, or isn't – in order to know what to do next.

Again, best I can do.