CPAP can I help it along?

[Pugsy]

Leak rate...Respironics machines report total leak in L/min
Total leak is just the mask's expected intentional leak or vent rate plus any excess leaks. All masks have a vent rate and it will increase as the pressure increases.
With SH you see the top leak line and that's the vent rate...and when you can see the bottom leak line that is excess leak or a very close estimate.
Large leak territory boundary line moves as the pressure might move. Example if your pressure ranges allowed for more movement the large leak boundary line might be one thing at 10 cm and a different higher number at 20 cm.
It also will vary with the kind of mask being used. It's not a huge variance though and with Respironics machines we can't tell them which type of mask that is being used anyway. So what you are seeing is a very close estimate.

Your machine will report any time that you crossed that boundary line into large leak territory as a LL or large leak.
See the LL on the Events graph? That's large leak. You didn't have any last night.
If you had reached the boundary line it would flag it and you could see it on the graph.

Your top leak line is running around 50 to 60 more or less with some upwards blips. While it might seem a bit high if you look at some other reports it really isn't because the bulk of that is the vent rate.
We are never given an exactly boundary line like ResMed (and to be honest I think the ResMed exact line isn't maybe the end all for everyone) but it's going to be up somewhere around 90 L/min and maybe more at your higher pressures.

I have seen people get a large leak flag at 65 L/min total leak at pressures of 6 and other people not get a large leak flag at a pressure of 10 with total leak at 70 or more. When I was using a Respironics machine with a nasal pillow mask I wouldn't see a flag unless I hit 90 L/min at a pressure of 14. I rarely saw a LL flag on the Respironics machine. I get them all the time with the ResMed.

At any rate you don't have to do any calculations...just let the machine do it for you. If it thinks you hit what it decides is large leak territory it will tell you so with a LL flag. These machines can handle a substantial amount of excess leak before they start running into trouble. I have only seen signs of trouble on a few Respironics machines and it is when total leak got up around 110 L/min.

So....don't worry about doing calculations...just let the machine do it for you and eyeball the LL part of the events graph and if you don't see any flags you move on because you didn't have any. If you do see an occasional short lived LL flag it's not the end of the world. It's only a problem when you have prolonged leaks up in the area where the machine could get into trouble that we start worrying about. 15 minutes of LL isn't the end of the world and I shrug my shoulders if I see it and that's the extent of it as long as the leak didn't wake me up.

How to know if the machine is running into trouble....what I saw was an auto adjusting machine that never auto adjusted...it functioned like a fixed pressure machine...no little test probes and no pressure movement. People think their machine is broken and not auto adjusting. One person had a hole in the hose that was doing it. Another person just had really crappy mask fit.

[DomP]

Perfect, thank you. So really I',m only interested in OA,H and CA?

[Pugsy]

Yeah, if you don't see any LL flags on that events graph you don't have to bother with the leak numbers as long as leaks aren't disturbing your sleep.
Now if a leak is waking you up it is unwanted and needs to be fixed but because it is disturbing your sleep.
Anything that disturbs our sleep is unwanted.

Let the machine do the calculations for you.

[DomP]

I've not noticed any leaks with this current mask (my 7th), so hopefully it stays that way. Thank yiu. next couple of days are now about side sleeping and convincing the consultant on Monday of my needs/wants.

[DomP]

Just back from my appointment and had to see a different nurse. She said they discouraged use of third party apps and wasn't even letting me speak before interrupting, so I had to tell her about herself before she would hear what I had to say. To ber fair, I was expecting that reaction, but sod them, I like to know what is happening and it's my health here, not theirs. I'm not trying to do anyones job for them, just trying to understand what is going on and to help eliminate a little quicker the things that are affecting my results. 6 weeks between each appointment with no app connection is very frustrating. Some of what was spoken about was around what she was trying to say about changing setting via the app which has never worked or connected their end. She's attempted to link again but I don't think it's worked, again.

Anyway, the conversation went on and she looked at the data and has sent me home with the wrist strap and finger thing that tests for oxygen. I'm not going to get a bilevel until the data is seen and an overnight appointment is made which I am told there is a fair wait for. I've got to take back the wrist equipment and my data card and leave it on Wednesday. If they have someone there to do the data there and then they will, if not they will send my card back in the post by Friday. I explained about the dryness and have a humidifier now. I was also given a chin strap to alleviate the mouth spreading at the high pressures, but left that on her desk. I'll collect that Wednesday. I wont be able to use it if it closes my mouth completely because of a nasal problem I have had ever since I can remember. I've never nose slept as far as I know and have always had trouble breathing through my nose.

So, frustrated and feel no further up the road is where I am now.

Last night was abad leak night (compared to usual), but my beard has grown a bit so I'm gonna chop that and see if it improves.

I have been told to send off for my licence as it would speed things up and she did say considering where I ahve come from and the fact I am no longer symptomatic that I have a good chance. I'm not holding my breath (excuse the pun).

[Pugsy]

Ouch. I was so hoping you would have someone with a more open mind. Too much to hope for I guess.
We can get you the official Encore software and let you plop down the exact same reports that they will generate when they can find the time...bet that would really frost her.
It's Windows only though and if you have a Mac then you would have to have some sort of virtual Windows on it (which can be done) or access to a Windows computer.

[rick blaine]

Hello again, DomP,

I understand that you feel disappointed - but the system is what it is.

I will try to post a longer reply later. But in the meantime:

One thing I didn't ask you - the Dreamstation that you have been issued with comes in a variant which has a cellular phone chip built in - so it can 'phone home' to the sleep-medicine department with how you're doing. Does your machine have that? And is it switched on? And is that what you meant by "she's attempted to link again"?

One piece of good news from what you say is that the SMD think you've made enough progress for them to support you getting your licence back. You can ring up the DVLA and ask them to send the two forms*, and these days, you can also download them.

The Agency says the process can take at least six weeks from them receiving the completed forms from you - but it has been known to happen quicker.

RB.

* At least two. The first, the confidentiality release; the other(s), for the consultant treating your condition(s). If you have more than one designated condition, you need a consultant report form for each condition.

[OkyDoky]

For the wireless cellular data link to connect you have to be in an area with good cell phone coverage.

[Snoregone Conclusion]

Ouch. I was so hoping you would have someone with a more open mind. Too much to hope for I guess.
We can get you the official Encore software and let you plop down the exact same reports that they will generate when they can find the time...bet that would really frost her.
It's Windows only though and if you have a Mac then you would have to have some sort of virtual Windows on it (which can be done) or access to a Windows computer.

The virtual machine/boot options for Windows on a Mac:

• Boot Camp (boots into Windows directly, no MacOS, part of MacOS)

• VirtualBox (free, not top performance/compatibility)

• VMWare Fusion

• Parallels

Not going to mention emulators, not generally worth it.

Note getting older versions of these may not work well or at all with the latest MacOS versions and features, with a big one being APFS (filesystem).

[rick blaine]

Hi DomP,

Here's the longer reply I promised. I note that you've said more than once that 'knowing why' is important to you.

Here goes.

It may be that at your most recent appointment you were given quite good news (content) and it's just that it was put badly (form or manner). You were told about the next moves - but the reasoning behind them was not shared with you.

Perhaps the specialist nurse you saw didn't have time. Or the skills. Or they are working on the basis that some things can only be told to you by a doctor, and not by them.

Equally in the perhaps region, you may have got the impression from this thread and this forum that the process of moving to a bi-level is an easy one.

Well, even in the US, a patient may have to spend six months on an APAP, and demonstrating that that isn't quite doing the job, before the private insurance company will approve a more expensive machine.

And I hope that I haven't suggested that, within the NHS, it's easy. As I said above, it is happening more often, but it's a long way from uniform across the country. Policy still varies from Foundation Trust Hospital to Foundation Trust Hospital.

And the policy at St George's is probably that, while they're happily issuing 'standard' patients with the now-standard Dreamstation auto, the consultant needs to make what's called an 'individual funding request' in order to issue you with a bi-level.

'Can I spend extra on this patient? Here are the results of the extra tests we did to show that said patient needs it.'

If I'm right that this is what's going on, then, sure, it would have been better to hear this from the consultant directly. But the sense I get is that the specialist nurse you saw had been fully briefed by the consultant on the possible next steps - even if she didn't explain the reasons for them very well.

And while I am not a doctor or a specialist nurse, it does seem to me that there's two things the staff need to know before upping you to a bi-level.

One, the machine you've got is working flat out. It can't do any more. But is what it is doing sufficient? What are your oxygen saturation levels ('O2 sats') like under the present arrangement? Is there any risk of harm?

Hence the wrist-mounted pulse-oximeter (plus SD card).

Two, if they did issue you with a bi-level - would it provide sufficient extra benefit? Would the split level make for better O2 sats AND increased comfort and compliance? (And while we're at it, what would its settings need to be?)

Hence the over-night in the sleep lab.

Your consultant is looking to find the evidence she or he must provide to 'the management' for a bi-level to be approved.

If I'm right, you are not being mistreated. The staff at St George's are doing the right thing by you, even if you have to wait a bit for the next component.

[DomP]

Hi Rick, Oh for sure, I know they have boxes to tick. we did OK by the end of the meeting and has agreed to see me tomorrow morning before her first appointment to check the Oxygen readings. She did explain the procedures to me so it's a case of sit tight and hope they are not too busy.

Somehow my machine had reset the flex to off and locked it. I tried sleeping with it last night and woke bloated and full of wind this morning. I've found how to unlock the flex so hopefully a better night tonight.

[Pugsy]

Somehow my machine had reset the flex to off and locked it.

She did it. Either manually or using Encore Pro and the SD card.
If you turn it back on and it won't stick then it may be on the SD card in the form of a prescription setting written with Encore Pro.
You would need to erase the card to get rid of it or just use another card.

So watch it. Sometimes they use the SD card and it will overwrite any changes you make manually and the changes won't hold.

[DomP]

Ahh, that would explain why again last night I needed to go in and unlock it again before I can put it back on. She says she didn't change it, so maybe when fiddling to see why the link isn't working it may have been a setting that got switched.

[DomP]

In an update, I wore the wrist Oxygen thing Monday night and tuesday night and hanbded it back wednesday morning. I imagine both days to be quite different as the forced flex off was on first night and not second, it kept me up and when I checked the pulse on the wrist, it was very high. Second night I was more relaxed with flex on. All bar one night this week have been below 5 with one night being 6.5. I don't seem to be doing anything different to before, not force sleeping on my back but the readings are down. A bit miffed because even after going Auto min 19, max 20 and back sleeping I was nearer 10s.

[rick blaine]

Some parameters. When the staff in A&E (US: the ER) put someone on a pulse-oximeter ('pulse-ox') they know that normal is between 94 pc and 98 pc. They don't expect 100.

Between 90 and 94, they think 'mild respiratory disease'. Not normal, but acceptable.

If pulse-ox goes below 90 and stays there, they start thinking about putting the patient on supplementary oxygen.

When it comes to de-saturations in sleep apnea ('de-sats'), you want to know to what level, and for how long.