OSCAR help - AHI of 5.82 to 39.9?!

[HollyL]

Hi there, I am a relatively new CPAP user, since 23rd Jan, having been diagnosed with severe OSA (AHI of 97.7).
As advised on this forum, I have downloaded OSCAR and have attached two screenshots - hopefully I have followed the sticky threads correctly with how I've organised the graphs! I am using a trial machine on a fixed pressure of 12 and I can clearly see that is too low as I am hitting it every night, all night.
Last night I had an AHI of 39.9 and feel dreadful today, my best AHI is 5.82, both screenshots are as below to compare.
Is there anything that looks glaringly obvious, or is it just the pressure is too low? I am still getting my head around all the terminology and I want to go into the hospital to get the pressure changed, rather than wait until the end of the four week trial. If zooming in on any particular event would help, I am happy to provide more screenshots.
Thank you to anyone who can help!

[Pugsy]

The really high AHI nights....were you by chance on your back most of the night?
If so, that might explain the wide difference in AHI...lower AHI nights maybe on your side more and higher AHI nights you were on your back more.

Your machine is a fixed pressure machine...after the ramp time is over with it is going to stay at the fixed pressure of 12. It cannot go higher or lower.

Yes...definitely need more pressure,

[HollyL]

The really high AHI nights....were you by chance on your back most of the night?
If so, that might explain the wide difference in AHI...lower AHI nights maybe on your side more and higher AHI nights you were on your back more.

Your machine is a fixed pressure machine...after the ramp time is over with it is going to stay at the fixed pressure of 12. It cannot go higher or lower.

Yes...definitely need more pressure,

Ahh... quite possibly. I will create a pillow fort to stop myself rolling onto my back tonight and see what happens!!

I hadn't realised it would always stick at 12.. makes sense now of course.

Thanks Pugsy - I shall head to the clinic and ask for an increase!

[LSAT]

You are showing an Autoset model in your profile, but Oscar says you are using a fixed pressure Elite model.

[HollyL]

You are showing an Autoset model in your profile, but Oscar says you are using a fixed pressure Elite model.

Thank you! I've updated it..

[chunkyfrog]

You might benefit from getting the clinicians manual.
Then you can adjust the pressure on your own machine.
No waiting for your provider to do it for you.
Manuals are available over on apneaboard.com. FREE.

[HollyL]

Then you can adjust the pressure on your own machine.

Unfortunately the NHS staff have asked me not to mess with any settings while I'm on this 4 week trial period. I've been in today and they've upped the max pressure to 14 which was a hassle - they class the pressure as a 'prescription' so it had to be a senior member of the team to sign it off - who was on their lunch break I didn't get a straight answer on whether I can get an Auto machine... if it comes to it, I'll just save my pennies to buy one! Hopefully that's enough pressure and I feel the benefit again, seems a right pain if I need to keep going back for 'permission' to increase the pressure until I get to an optimum level.

[chunkyfrog]

Then you can adjust the pressure on your own machine.

Unfortunately the NHS staff have asked me not to mess with any settings while I'm on this 4 week trial period. I've been in today and they've upped the max pressure to 14 which was a hassle - they class the pressure as a 'prescription' so it had to be a senior member of the team to sign it off - who was on their lunch break I didn't get a straight answer on whether I can get an Auto machine... if it comes to it, I'll just save my pennies to buy one! Hopefully that's enough pressure and I feel the benefit again, seems a right pain if I need to keep going back for 'permission' to increase the pressure until I get to an optimum level.

Sorry, I missed that you are in the UK, and are presently forbidden to participate in your own care,
At least you have the data, so you can tell them what "their" settings/machine are doing.
If adequate pressure results in aerophagia, you can lobby for an Autoset.

[rick blaine]

Hi HollyL,

Just so you'll know, I'm in the UK, in Gloucestershire, and I am and continue to be an NHS patient. I also bought and own my PR 561 auto-adjusting machine – and the sleep medicine department at my local Foundation Trust Hospital have no problem with that.

They are happy with my numbers. They are happy with my machine – they know its provenance – and they are reassured that, as a medical journalist (retired), I know the laws and pressures they are under.

I particularly know about the legislation around 'duty of care' which in the UK sits on the shoulders of doctors, specialist nurses, and sleep physiologists. And I am careful not to say or do anything to deny their sense of responsibility, or have them thinking I might come to harm.

So ... my using my own machine while continuing to be an NHS patient isn't a problem.

And ... at a practical level, I happen know the sleep-apnea 'change mantra' – 'Make one change at a time. Make it a small one. Wait at least four days or more before making another one. (This latter is so the changer can more fairly asses the effect of that one small change. The results from one night may not be representative.)'

Do you follow where I'm going with this? I can't suggest anything to you that would contradict the medical advice you have been given, or stop you from following the treatment that has been prescribed for you. That's the law.

But I don't know, you might find yourself wondering ... 'changing pressures, in line with best practice, but without direct permission – is it anything that that Blaine fellow has ever done?'

As Francis Urquart would say: 'You might very well think that. I couldn't possibly comment.'

On another point, from what you post, it does seem to me that the SMD you attend has the policy of issuing only a fixed-pressure machine to standard cases. As I said before, this is usually done for financial reasons (although there are also a couple of medical conditions for which auto-adjusting is contra-indicated).

But even if that is the general policy at your SMD, there is always the possibility that the doctor in charge of your treatment might make an 'individual funding request' for you to be issued with an auto-adjusting machine. Ie, to go beyond policy.

And since that request involves paperwork and a case being made for it, there would have to be evidence – clinical evidence – that it is necessary.

But a bit of a drag if you have to go through a couple of momths of less-than-optimum treatment just to provide that evidence.

There is an alternative, as you mention. And that is that you buy your own auto-adjusting machine. Since the SMD you go to has, or appears to have, standardised on ResMed machines (meaning: they have the software to read ResMed, but not to read any other brand). the appropriate model to go for would be the ResMed AirSense 10 AutoSet for Her. Price £680, with no VAT.

And my 'Martin Lewis' tip is: buy direct from RedMed UK. For all sorts of reasons.

You will need a 'scrip' form, but you can download that from ResMed. And if your chief physiologist is anything like mine, she will be more than happy to fill it in and sign it.

And of course, when you start using it, you would involve your SMD in initial settings ...

And while I'm at it, there is a third major point I wanted to mention. Your AHI is 'very severe'. That's one thing. And from the looks of it, you require higher pressures. (As a rule of thumb, let's call anything above 15cm 'quite higher pressures'.) And if one combines these two things ... with some patients, if they need quite higher pressures for more than half the night, they might get more side effects.

As I understand it, you're still to find out if that will apply to you. But if it were to, then the machine 'above' the AutoSet might be the best one for you. That would be a 'bi-level' – one that lets you breathe in at one pressure (say, 16 cm), and breathe out at a much lower pressure (say, 10 cm).

Within the UK system that would almost certainly be an 'individual funding request'. And again, if that were recommended but not supplied, you could buy your own.

OK, another part of the briefing over.

[Jas_williams]

Then you can adjust the pressure on your own machine.

Unfortunately the NHS staff have asked me not to mess with any settings while I'm on this 4 week trial period. I've been in today and they've upped the max pressure to 14 which was a hassle - they class the pressure as a 'prescription' so it had to be a senior member of the team to sign it off - who was on their lunch break I didn't get a straight answer on whether I can get an Auto machine... if it comes to it, I'll just save my pennies to buy one! Hopefully that's enough pressure and I feel the benefit again, seems a right pain if I need to keep going back for 'permission' to increase the pressure until I get to an optimum level.

There is nothing stopping you changing settings or getting your own machine, within the first month I had purchased my own Resmed Autoset rather than the fixed pressure machine I had been issued. I downloaded Resscan and showed them the data for the two machines at my 30day follow up. The machine I was issued was a Resmed S9 escape which only showed I was using the machine no AHi at all.


Patient advocacy is a wonderful thing and an engaged patient is beneficial, if your AHI is below 5 average when you go go back then you will be considered treated and told to come back in a year. My AHI was still 31 some nights. I ended up purchasing an ASV machine to treat complex apnoea, as a special funding request would be required to get one through the NHS. I am now 2 years into my CPAP journey I attend the lung clinic once a year to certify compliancy (that I am using the machine) as sleep apnoea is a notifiable disease to the DVLA and they can take your driving license away if your sleep apnoea is not adequately treated.



Wow that was a long message from me

[rick blaine]

Jas_williams wrote:

"There is nothing stopping you changing settings."

Actually, there is.

1. As I tried to convey above, the NHS staff may feel they have to defend their position, citing duty of care.

And the SMD staff have the right to assert and defend their position. Not doing so might damage their careers. Plus, there may be memos floating about from the hospital's lawyers, reminding doctors and nursing staff not to expose the FTH to possible legal action.

2. And anyway, since the machine stays the SMD's property – it is on permanent loan to the patient – the SMD could insist that it be used as per their clinical judgement.

3. And, although it is a very rare course of action, it is within the NHS's power to refuse a person as a patient.



Now, as you point out, the situation changes when you, the patient, or I, the patient, own our own machine. (And we both made that step into ownership because we were only being offered a fixed-pressure machine. And I make a point of mentioning that option to every UK patient who comes on here having been issued a fixed-pressure unit.) )

It is then a question of: is the SMD willing to 'tolerate' our action, and continue to accept us as a patient? Can they see that we are being careful? And are they satisfied that it is safe for us to have our own machine? For example, is it a reputable brand? Is it being well-maintained? If not purchased from new, what is its history? And so on.

If you read what I posted again, carefully, you will see that I am suggesting HollyL – or anybody else – not 'rub the depart-ment up the wrong way'. To instead, see their point of view. See what can be negotiated from a sympathetic position. And then, if that doesn't produce a result, think about self funding.

Yes, in the end, pragmatics may win out. If the numbers are good enough, going semi-independent can become de facto accepted.

But it's how you or I or HollyL gets there.

[Jas_williams]

Rick, I had not read your post when I first responded but I will comment that I had different responses to self treatment depending on which sleep nurse I was dealing with some were all for it. They covered of their duty of care by getting me to user a hospital provided pulse oxymeter to ensure I was getting sufficient O2


Also it’s about dialogue as questions what if I change this, why are the settings like that, what in my charts shows the need for this, how will an increase in pressure likely help etc.....

[HollyL]

I can't tell you how much I appreciate your replies and such detailed responses.
I struggled through a night at 14.. I'm not sure if I put too much pressure (excuse the pun) on myself for it to be a successful night, or whether I was genuinely conscious of it being a higher pressure. My breathing felt quite shallow, but I don't know if that was just stress.

In any event, I had an AHI of 11.58 last night and feel gutted.
I will give it another try tonight, no sign of aerophagia just yet *fingers crossed*, I have a feeling they won't be letting me drive on Friday at this rate! Still.. I am grateful that I am receiving some treatment and not dealing with AHI results in the high 90's anymore.
In the words of my boyfriend - if it was that simple, they wouldn't have a drop in clinic every day!

[HollyL]

So after a couple of nights adjusting to the higher pressure of 14, I was getting the best scores I've ever had - 1's and 2's and feeling INCREDIBLE.
Monday - 9.5
Tuesday - 14.9
Wedneday - 36.8

Needless to say I'm off to the drop-in clinic at the hospital today - they sent me away with a fixed pressure machine at the end of my 4 week review.
I was hoping the increases are due to the fact I have a bad cold and might be stuffy... but I think I'm just kidding myself - I breathe through my mouth even when not stuffy!
I can post some charts later but OSCAR seems to be suggesting to me that there's still not enough pressure. Is it normal to 'get used' to a pressure and then need more?

I am going to push for an Auto machine today.. wish me luck!

[HollyL]

Well, they put me straight onto an Autoset! Couldn't ask for better, it was no hassle whatsoever. Probably asking for miracles on night no.1 but I was slightly disappointed by this score. I'm still getting over a nasty chest infection so I was awake coughing for the gap in the night. Around 2:15am when I woke up I really struggled with the pressure until I could get the thing switched off, it was only on 16.7 and I can see I went almost all the way up to 20.. yikes..
I woke up feeling air escaping around the edges of the mask, but no sign of large leaks so - should I not be concerned by this? I'm trying to read up about EPR settings but not entirely sure whether this would help me? Chart as below, if anyone has any suggestions I'd be so grateful! If I need to just be patient and let myself get used to a new machine, I will accept that too.