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Hi, all. Dad's been a real champ re: using the machine. I've gotten him used to the F10, and he's using the machine all night every night (and puts it on anytime he's laying down to watch tv during the day). I have two issues/questions for all of you:

1. His settings. For the past few nights, I've had him set on Auto from 9-16, but he's often pinning the pressure at 16. I'm a bit reluctant to raise the ceiling, because he showed lots of Centrals (last night, where the only difference was I put on A-Flex set at 1):

His data from 4/14:


His data from 4/15:


His data from last night:


Suggestions, please? I'm concerned about how much PB and centrals (at times) he's having and wondering if he needs a more sophisticated machine (like mine). Should I leave the settings as they are for more time? Should I take A-Flex off again or increase the setting? Or should I try a different range of pressures? I haven't had to experiment like this on myself for several years, so I'm a bit lost with Dad.

I had adjusted his mask to where it was fitting pretty well; he'd had some leaks, but it wasn't anything terrible. But then he accidentally undid the lower headgear straps' Velcro (instead of just looping the already-set straps over the pins on the mask) without my knowledge, so I had to readjust it recently. My mother woke him one night because he was doing a lot of face-farting, and it woke her up. I readjusted it, and the mask is fitting him pretty well again now.

2. About his mask. As I said, he's successfully using the F10 now and has pretty much mastered the headgear straps at this point. As far as the DME knows, he's using the Pilairo (but he found that mask a bit difficult to manage) and he has one week left to exchange the mask if he wants to. When the RT was here a few weeks ago to fit Dad and deliver the machine, he left us with the F10, but Dad had such claustrophobia that he ripped the mask off the very first night, before he even fell asleep, which is why he ended up trying the Pilairo. LSS, the DME didn't ask for the F10 back at the time, and I've since gotten Dad over the claustrophobia hurdle by having him wear the F10 as much as possible during the day.

So I'm asking for advice from you guys on whether or not to get another pillows mask (I'd probably ask for the Nuance Pro) in exchange for the Pilairo. The DME sent me some other pillows just to see if they'd fit Dad's long nostrils, and it looks like the Nuance Pro might do. (Of course, with no pressure from the machine, anything will fit well; won't know if it will work for him unless/until we have the whole mask to try it with the machine.) I'm tempted to get him another mask that he could use while I have the chance, but I'm reluctant to risk them asking for the F10 back (along with the Pilairo). I suppose I could tell them that I threw the F10 away or gave it away when Dad couldn't/wouldn't use it.

I have to contact the DME soon anyway, because Dad will need a new HEPA filter in a week. (If you remember, the RT told me that the HEPA filter was good for three months of use, and I should just flick it with my fingernail to clean it in the meantime. ) I'm going to insist that they provide a new one each month.

So, what say you all, on both issues? TIA

I'm curious about this. My machine was set to go from 8 to 16 (top number being moved up from 10 because I spent most of the night hovering at top number. I felt terrible as if i had been blowing up balloons all night and new DME had me try lowering the top number a bit at a time. I am now set at 8-9cm and still have an AHI under 1 most nights and not much over 1 other times. I feel so much better and am curious when I see someone needing high pressure.

Can you get us a snap shot of the wave form graph showing PB green time with a bunch of CAs showing up in the green?
An entire one page of the wave form with multiple PB time would be nice....not just one line.
Do you know how to get wave form graphs? That's the little blue paper clip looking thing next to summary I think it is and there will be many pages depending on how long the machine was used.
Depending on with Encore you are using you might only have one wave form graph available at a time and last nights would be great because it has PB and CAs both.

If the PB flow doesn't look CSRish...I would increase the minimum and leave the maximum alone for right now.
See what happens to the OAs first with more minimum pressure. He clearly needs it for the obstructive stuff.
It's the minimum that for sure needs to be increased to deal with the obstructive stuff...and maybe the maximum but the minimum is the most critical at this point to address the OAs.

Pugsy wrote:Can you get us a snap shot of the wave form graph showing PB green time with a bunch of CAs showing up in the green?
An entire one page of the wave form with multiple PB time would be nice....not just one line.
Do you know how to get wave form graphs? That's the little blue paper clip looking thing next to summary I think it is and there will be many pages depending on how long the machine was used.
Depending on with Encore you are using you might only have one wave form graph available at a time and last nights would be great because it has PB and CAs both.

If the PB flow doesn't look CSRish...I would increase the minimum and leave the maximum alone for right now.
See what happens to the OAs first with more minimum pressure. He clearly needs it for the obstructive stuff.
It's the minimum that for sure needs to be increased to deal with the obstructive stuff...and maybe the maximum but the minimum is the most critical at this point to address the OAs.

Thanks, Brenda. I admit I don't know much about the Wave Form graphs, but here they are from last night:

Aw man, I hate it when there appears to be a mixture...some of that green PB looks a bit CSRish to me...not a lot of it though.
Perhaps you could sweet talk Morbius into taking a look and offering his input. I am not the best at breath by breath analysis unless it's really blatant.
Some of the PB is just general waxing and waning and not CSRish at all...but some of it looks sort of CSRish to me.
It's not blatant though and he does have nights where centrals don't happen.

Since he didn't have an in lab titration study and since the machine obviously wants to be more aggressive with the OAs and hyponeas....I think I would still try more minimum (probably more than my usual 0.5 to 1.0 recommendation) and see what happens. I am thinking up around 10 or 11 minimum where the median average wants to stay.
Of course going up slowly is probably not a bad idea.
Better to try to prevent the airway collapse in the first place instead of trying to fix it with high pressure later.

There's really probably several different options running through my head right now but if it were me...I would keep it simple and start with the basics first..and that would be a more optimal starting minimum pressure.

Thanks again, Brenda.

When I had Dad at a lower pressure range (8-13, I think it was), he had some nights where he barely went above 9; and then he had some nights where he was pinning the pressure graph for much of the time, so I've gradually upped the range to what it is now. But his current data has me perplexed.

Dad's handling the increased pressure with no problem, so I'll up the min to 11 and leave it there for a few more nights. Hopefully, Morbius will chime in with his insight at some point.

Thanks for your help, as I'm really at a loss with his data at the moment. I appreciate your knowledge and your willingness to share it.

Per Philips Respironics:

Cleaning or Replacing the Filters
Under normal usage, you should clean the gray foam filter at least once every two weeks and replace it with a new
one every six months. The white ultra-fine filter is disposable and should be replaced after 30 nights of use or sooner
if it appears dirty. DO NOT clean the ultra-fine filter.

CAUTION: Dirty inlet filters may cause high operating temperatures that may affect device performance.

i.e. "Cough up at least one filter per month, DME."

Remember that a dirty filter actually probably gives cleaner air than a new one, but it makes the machine work harder.

If you're willing, put an SD card image on dropbox.

It might be interesting to try narrower ranges or even fixed pressure, if he can stand it. Makes the analysis easier.

archangle wrote:Per Philips Respironics:

Cleaning or Replacing the Filters
Under normal usage, you should clean the gray foam filter at least once every two weeks and replace it with a new
one every six months. The white ultra-fine filter is disposable and should be replaced after 30 nights of use or sooner
if it appears dirty. DO NOT clean the ultra-fine filter.

CAUTION: Dirty inlet filters may cause high operating temperatures that may affect device performance.

i.e. "Cough up at least one filter per month, DME."

Yep, I already texted the one guy at the DME who seemed pretty reasonable and knows a bit about therapy (he uses a machine, himself). Haven't heard back from him yet, but I hope I don't have to jump through another million hoops just for filters.

If you're willing, put an SD card image on dropbox.

It might be interesting to try narrower ranges or even fixed pressure, if he can stand it. Makes the analysis easier.

I get the jitters about putting too much info on a site like Dropbox (especially medical info that isn't my own), so I won't be doing that. But thanks for the suggestion.

If anyone wants more detailed data, I have no problem posting it here. Maybe I'm naive to think this forum wouldn't be of any interest to a hacker; known (and popular) sites like Dropbox make me a bit nervous... (But I readily admit to being a technological dinosaur, so...) *shrug*

BleepingBeauty wrote:I get the jitters about putting too much info on a site like Dropbox (especially medical info that isn't my own), so I won't be doing that. But thanks for the suggestion.

If anyone wants more detailed data, I have no problem posting it here. Maybe I'm naive to think this forum wouldn't be of any interest to a hacker; known (and popular) sites like Dropbox make me a bit nervous... (But I readily admit to being a technological dinosaur, so...) *shrug*

I approve of paranoia, used judiciously.

However, the only personal info in the SD card is his machine serial number and model. If someone gets that information, they can't do much with that info unless they have access to your DME's medical records. Even if they have that, about all they've figured out is that BleepingDaddy's real name is Bob Brown. If they have that information, they probably are already doing identity theft fraud on BleepingDaddy. I guess if the CPAP police are coming after BleepingBeauty for changing your own pressure, you might be in trouble.

You can also PM the link to selected people and not post it publicly.

HIPAA only applies to medical providers, insurance companies, and "covered entities," (essentially people who do work for the first two groups.)

However, as I said, paranoia is good.

Well, it all looks heavily central-flavored or SWJy to me. This is in keeping with what we talked about in January-February re: medical history and medications.

While the HST showed severe obstructive component;

Dad had a home sleep study recently, and he was diagnosed with severe apnea (AHI of 56; AI 45.3; HI 10.5; only 1 Central all night; no snoring; sleep efficiency of 53%). His O2 desats weren't terrible (min of 77%), but his Desat Index (4% drop) was 52.3/hr.

the absence of snoring is highly unusual (actually more like impossible).

Further, if it is/was all central component, low-medium level CPAP or even supplemental oxygen could correct a lot of that (I mean, it's not like CPAP NEVER works for centrals. Excess pressure is only bad for pressure-induced centrals).



So I think you need to specifically define what it is you're trying to accomplish. Do you want to address:

• OA
• CA
• Snoring racket/resuscitive wretching
• Quality of life
• Oxygen saturation
• EDS
• Longevity
• Comfort
• Make waveforms look pretty

And "IMHO", the most important parameter that needs to monitored (oxygen saturation) is not (being)(monitored)(WHATEVER!!).

You could go with an Escalade-model machine (PR ASV Advanced), but frankly, given the numbers you have, I don't think you could qualify if you were seeking to get reimbursement.

Did you get a copy of the HST? Do you have a recent Ejection Fraction?

BTW:

DHis O2 desats weren't terrible (min of 77%)...

Yeah, they were.

Thanks for looking at this, Dave.

Morbius wrote:Well, it all looks heavily central-flavored or SWJy to me. This is in keeping with what we talked about in January-February re: medical history and medications.

The meds he's taking now:

Mornings
Levothyroxine 25mcg
Pantoprazole SOD DR 20mg
Multaq 400mg
Isosorbide DN 20mg
Baby Aspirin 81mg
Terazosin (Hytrin) 5mg

Evenings
Celexa 40mg

Morbius wrote:While the HST showed severe obstructive component;

Dad had a home sleep study recently, and he was diagnosed with severe apnea (AHI of 56; AI 45.3; HI 10.5; only 1 Central all night; no snoring; sleep efficiency of 53%). His O2 desats weren't terrible (min of 77%), but his Desat Index (4% drop) was 52.3/hr.

the absence of snoring is highly unusual (actually more like impossible).

I have the report, and that's what it says. I have to believe it was monitored. If it's impossible that there was no snoring during his study, I guess that means the equipment simply failed in some way to report it.

Further, if it is/was all central component, low-medium level CPAP or even supplemental oxygen could correct a lot of that (I mean, it's not like CPAP NEVER works for centrals. Excess pressure is only bad for pressure-induced centrals).

I don't disagree. I just don't know where to start, considering the up-and-down nature of his data. I did put the machine in CPAP mode for a couple of nights (at 11cwp), with mixed results. Here's the data:

First night (4.10), which looked promising (all the RERA notwithstanding)


But then I got this result (on 4.11) and subsequently put him back into APAP mode


Perhaps I just wasn't patient enough. Should I try straight pressure at 11 again for a few more nights or would you suggest going lower (or higher) on the straight pressure setting?

So I think you need to specifically define what it is you're trying to accomplish. Do you want to address:

• OA
• CA
• Snoring racket/resuscitive wretching
• Quality of life
• Oxygen saturation
• EDS
• Longevity
• Comfort
• Make waveforms look pretty

Without doubt, I want Dad's quality of life to improve. He's almost 86, and his own dad and his two siblings passed on in their late 80s, so I have no idea how much time he has left on the planet. I just want that time to be more pleasant; I don't want him to feel like he's just waiting to die.

Re: his use of a machine, I've already seen a big difference in his quality of life, but we're not there yet. Mornings are typically the worst time of day for him - he often feels weak and shaky. Before xPAP, he always wanted to go back to bed after breakfast and usually slept most of the day away; then he would wake up and realize that the day was gone and he hadn't done anything, which only made him feel worse (mentally). He would mutter that we should "put him away" somewhere, because he felt utterly useless and hated feeling like he was a burden. Now, he's still a bit sluggish and weak when he first wakes up, but he stays awake all day and only occasionally wants to lay down to watch tv when he feels a bit shaky. (During those times, he voluntarily dons the mask just in case he might nod off, but he rarely sleeps during the day anymore.)

And "IMHO", the most important parameter that needs to monitored (oxygen saturation) is not (being)(monitored)(WHATEVER!!).

I have my neighbor watching the house for me in AZ, and I could ask him to find and send my O2 monitor. Or maybe I could ask his GP to script an overnight monitor for a couple of nights... I don't know how well Dad would tolerate wearing the bulky finger sensor (like the one on my unit) all night, though. I have to regularly remind him of the reason he's using the machine in the first place. (He's fine with it once he understands why, but his dementia/Alzheimer's means he needs reminding of it often.) I know that *I'm* very aware of the finger sensor when I wear it, myself, and the last thing Dad needs is more disturbed sleep. But I'll send for my unit if you think it's worthwhile.

You could go with an Escalade-model machine (PR ASV Advanced), but frankly, given the numbers you have, I don't think you could qualify if you were seeking to get reimbursement.

I'll be quite satisfied if his current APAP (even running in CPAP mode) could treat him well. I'd prefer to keep his treatment as simple as possible, given the circumstances.

Did you get a copy of the HST? Do you have a recent Ejection Fraction?

This forum taught me well, and yes, of course I have a copy of the Home Sleep Study report. I asked Mom if she knew what Dad's Ejection Fraction was (she's a retired RN), and she produced documentation from when Dad was hospitalized last October. It says: "LV ejection fraction of 55-60%. Spectral Doppler shows an impaired relaxation pattern of LV diastolic filling."

As to the rest of the report, findings that may be of interest to you are:

• Global RV systolic function is normal. The right ventricle is not well seen.
• The aortic valve is sclerotic. Systolic opening is normal.
• The mitral valve is degenerative. The posterior leaflet is mildly thickened and/or calcified. No evidence of mitral valve stenosis. Trace mitral valve regurgitation.
• The tricuspid valve is not well visualized. The tricuspid regurgitant velocity is 3.43 m/s, and with an assumed right atrial pressure of 10 mmHg, the estimated right ventricular systolic pressure is moderately elevated at 57 mmHg. Mild tricuspid regurgitation is present.
• The pulmonic valve is not well visualized. Trace pulmonary valve regurtitation.
• The pulmonary artery is not well visualized.
• The inferior vena cava was not well visualized.
• No pericardial effusion is seen.
  IMPRESSION:
  1. Size, thickness and function are normal, with normal wall motion LV systolic function with an EF of 55-60%.
  2. Impaired relaxation pattern of LV diastolic filling.
  3. The aortic valve is sclerotic.
  4. Moderately elevated pulmonary artery systolic pressure.

<snip charts>

Hope that helps. Let me know what you think now, please. TIA

BleepingBeauty wrote:I have the report, and that's what it says. I have to believe it was monitored. If it's impossible that there was no snoring during his study, I guess that means the equipment simply failed in some way to report it.

Or (and this is the absolutely key point) everything is central, and not obstructive.

So upload everything you have. Looking at the bad night at 11 could offer more clues. Clearly, without knowing if it's central or obstructive, or a split (most likely-- I'm still thinking big central component although less than a minute ago...)

...because the EF is normal. It sure would have helped if it were 40% (helped me anyway. Horrible for him).

Absolutely need oximetry data. If that mess is still causing wicked desats (and it should) we need to attack this in a big way.

And what is sleep and wake is certainly not clear either. Given the situation, one would imagine that 25% of the sleep time is wake. Or more. Or less.

Dial wingin' is hopeless without at least one more bit of data- effort channels. So the BEST answer is get more home studies with the CPAP on. Use something like ApneaLink Plus or NoxT3.

Morbius wrote:[a split (most likely-- I'm still thinking big central component although less than a minute ago...)

Because here's an interesting cross section of a bunch of Az patients in a drug study:



So there's events in REM (but not a real lot more) and no central component.

However, with that wicked PB you got there, there's got to be at least some increased chemoresponsiveness.

Or darn, forgot:

Low or wax/wane O2 sats could generate that PB, so supplemental O2 could fix some stuff.