Help with optimizing PAP for 85-year-old

[Sleeprider]

I agree with Dave. The less you get mired in the weeds of EPR and pressure the better. Focus on results, comfort and restorative sleep goals. Save the technical stuff for a face-to-face. The risk in getting too technical is you begin to look like an internet genius, and you doctor really doesn't want to hear it. The problem is real, and it is sufficient for an appropriate therapy to be applied. That is all that needs to be covered in requesting an ASV titration.

[QuestionableQuerant]

Thanks, guys. I think you're right about my needing to pare and tone things down. I just hope I can persuade him...

Last I checked a few weeks back, the soonest we could see him face-to-face was Sept 23. I'll try again to move that up...

I've attached a copy of a sleep study performed Oct 2018, which showed a fair number of central apneas (~9 per hour0. I recall that, at the time, most of these were explained away as "sleep-wake junk" or otherwise not being bona fide - which I don't doubt as his sleep doc is board certified in sleep medicine and I trust his intentions. However...it's nonetheless interesting that the presence of (suspected) centrals was noted during both that sleep study and the course of his past/current treatment.

If I knew then what I know now (age-old lament), I'd never have been so patient w/his APAP therapy.

Thanks again.

[SarcasticDave94]

69 CA, I'm not exactly buying SWJ, seems too easy to suppose 69 CA events were SWJ induced over the roughly 8.1 hours of bed time, maybe it was movement or similar but I think it's rather a "dismiss CA than work to address it, lazy doc moment, self over patient" thing...

If me, I include 69 CA and 46 Mixed, nets 115, if we count it that way, CA and mixed are more than 50% of events

Concerning somewhat is the oxygen levels, lowest of 79 SpO2, total time below 88% was 28.3 minutes. This might be a qualifier for supplemental oxygen...

[QuestionableQuerant]

Thanks, Dave. - here's what I think I'm gonna go with (you'll notice that I incorporated your reference to centrals and mixed apneas noted during his sleep study).

I mentioned the attempted setting adjustments (which I doubt the doc will be thrilled with) in no small measure b/c he'll see them when he downloads the data, anyway.

I just hope he doesn't suggest BiPAP for him as in interim measure, which I understand is often a necessary waystation of failure en route to ASV. Dad is 85, after all, and doesn't need to have any more of his time wasted than necessary.

Nick

******
Dear Dr. _______,

I’m writing to request an ASV titration for my father, as I’m concerned that his PAP therapy is proving inadequate to his current needs:

As you noted previously, his numbers always have seemed a bit “off” since starting sleep therapy.
* While using the DreamStation over 2.5+ years, his average AHI was 8.58.
* His *best* average AHI, 7.05, was realized during his final 24 days of using the DreamStation.

Since switching to his new APAP device post-Philips recall (July 2 – Aug 12), his reported clear airway events have become more pronounced, averaging over 6.2 per hour over the period.
* In a bid to minimize his CAs (without affecting hypopneas or other events), I attempted various (conservative) adjustments to his new device’s pressure and EPR settings – this proved unsuccessful.

• For the past 12 days, we’ve used the following settings: APAP mode, pressure: between 8 and 12; EPR = 2; response mode = soft.
  
• I’ve documented how attempted adjustments to pressure and EPR settings affected his events at specific data points. I could forward if you’d like to review.
  

* Central and mixed apneas together comprised over half of the events recorded during his Oct 2018 sleep study.
* Could the CAs have been present while he used the DreamStation , too – just not as pronounced – and, hence, not recorded or reported as such by the device?

Most concerning to me is that he just doesn’t seem energetic or well-rested, is more insistent on taking short afternoon naps, sometimes dozes off in his recliner during late afternoon/early evening, etc.
 
I wouldn’t be making this request if I weren’t absolutely convinced that his current sleep therapy has proven inadequate.

Thank you for your time and consideration. Please let us know your thoughts.

Respectfully,
*****

[SarcasticDave94]

OK that's a better take. Best wishes doc gets off his fat butt... Short leash and if doc doesn't respond or listen, fire em and get someone who cares, IMO. Keep us updated.

[cathyf]

I would point out that the ResMed ridiculously bare-bones sleep report is AHI, Total AI, Central AI. In other words:

• what's the AHI--because AHI is the mainstream metric of treatment success/failure
  
• AI-- of the apneas and hypopneas, how many are apneas? which tells you the fraction of each type
  
• CAI-- of the apneas, how many are centrals? APAP doesn't treat centrals, that number is directly telling you when you unquestionably  need an ASV
  

We here on AB spend lots of time and energy dealing with the issues of great-numbers-but-still-crappy-sleep. We talk a lot about how the simpleminded sleep medicine complex hyperfocuses on this partial picture and ignores the big picture.

But step back here. Your dad's treated AHI is crap. His treated AI is crap. That tells even the most simpleminded hyperfocused sleep doctor that his therapy is crap. And finally his CAI is the biggest crap of all, which is the mainstream simpleminded proof that APAP is useless to him and he specifically needs an ASV.

I've got to construct a big long argument to get me a diagnosis of sleep apnea at all. Your dad?

Open.
Shut.
ASV.
no brainer.

[Sleeprider]

With regard to bilevel, your request for ASV titration may become a progressive titration that evaluates bilevel and ASV in the same test. This is pretty common practice and will demonstrate bilevel to be ineffective. I am sometimes hesitant to suggest some people get a titration because their apnea is inconsistent, including long periods without events. Your dad has clusters of events all night long, and a titration should quickly identify ASV as a solution.

[QuestionableQuerant]

(update)

Unfortunately, my father's late August titration turned out to be pretty much a nothing thing, preordained to be so, perhaps, by its originating order:

"Type of Order: CPAP Titration; Order Comments: CPAP/ IF there are significant central events can start ASV."

The sleep tech ultimately declared victory after achieving for him an AHI of 4.8 events per hour over an unspecified period using a fixed pressure of 11 without pressure support. I attached a redacted copy of the tech's notes in case anyone's curious.

On Sept 2, I emailed the sleep doc's office to ask whether the results of the titration study could've been affected by his having shorter than usual blocks of sleep while spending the night in an unfamiliar setting (as suggested by his having used the restroom 5 times). I noted as well the suboptimal results he received earlier this year when fixed pressures of 9 and 10, also without pressure support, were attempted over 44 and 104 days, respectively.

Having waited nearly two weeks for a reply, I contacted the sleep doc's office again on the 15th. After stating his results from Sept 2 thru Sept 14 (AHI: 8.86, CAI: 5.61), I expressed my growing concern over the following potential outcome:

"...1) his results prove just mediocre enough not to meet the criteria for more advanced PAP therapy, 2) both EERS and the medications currently on offer for managing central events are deemed inappropriate for him, and 3) the preceding together constitute something of an impasse where his sleep therapy is concerned..."

To date, I've yet to hear or read word one in response to either contact. I can't help but suspect that the disincentives (professional, financial, administrative) for docs to prescribe ASV must be pretty compelling. Even so, I'm not dead-set on my father's being treated with ASV, provided that satisfactory results could be achieved for him using EERS and/or meds (avoiding sedative hypnotics) with his current APAP. I just want the medical powers that be to offer *some* semblance of a strategy for improving the efficacy of his sleep therapy and minimizing his clear airway events, treatment-emergent or otherwise.

If anyone could offer suggestions on soliciting a 2nd opinion, if it would be better to do so from a doc unaffiliated with the current doc's healthcare conglomerate, whether a 2nd opinion might (or might not) be covered by Medicare, if we'd likely have to pay out of pocket for both an ASV titration and device (should such prove his best treatment option), or regarding anything else for that matter, I'd greatly appreciate it.

Thank you again.

[Ratchick]

Oh my God I am SO frustrated for you. I feel your pain so badly. I have Severe CSA, 10 years no therapy, finally 7 months ago started CPAP with limited help but still an AHI in the high 50s on bad nights and sats averaging in the 80s and periodically too low to measure) and I'm STILL waiting for someone to actually DO something - and chances are I will get fobbed off with CPAP and O2 rather than treating the underlying CSA.

I am so angry. Absolutely, the fact that your dad was up FIVE times and in an unfamiliar place and only slept for short periods is going to affect his results. Heck, if I just sleep for an hour at a time, I can get AHIs down close to "normal" levels - because often I have very few full apneas in that light stage of sleep, and it's not until I get into the deeper sleep that I start churning them out. I am so frustrated on his behalf. It SHOULDN'T be this difficult to look at his data and see that the therapy isn't working.

The fact is that APAP/CPAP simply isn't designed to treat centrals. If you're lucky (like me) you'll get some drop in numbers - an AHI of 50 sucks, but it's better than 80+ without it. But it's not a cure. If his sats are continuing to be poor (as in below 88 for more than a couple of minutes a night or below 90 for longer) then at the LEAST he needs supplemental oxygen. It may be that that, combined with CPAP, might be enough to help him feel better... but he's simply not treated and it's ridiculous to say that one fractured titration attempt overrides day after day of results.

You shouldn't have to, but is paying out of pocket for an ASV in your family's means? As far as I know, EERS is mainly about treating treatment-emergent centrals caused by flushing too much CO2, but if he has central/mixed apnea anyway, I don't know that that would be helpful.

[QuestionableQuerant]

Thanks for your reply, Ratchick. God knows I'm no doctor but those numbers you recounted (post-treatment, no less) are concerning. (dumb question alert) Do the docs or their staff review the data recorded by your AutoPAP device? If not, do you think they'd listen if you asked that they do so and scheduled an appointment to both discuss the data and review treatment options? Of course, I've no idea how your insurer (NHS?) may limit the treatment options available. In the States, it's my understanding that Medicare's criteria for signing off on an ASV prescription are quite strict. Another (probably) dumb question: have you researched medications that are sometimes used to limit central events?

Regarding my dad, his apneas are something of a mixed bag (diagnosed as being primarily obstructive with a not insignificant number of mixed and central events). Paying out of pocket would be a major expense but not impossible if that's left as the only means of facilitating effective treatment of his condition.

I will say this really shouldn't be so difficult as one would think insurers would be monetarily incentivized - if nothing else - to ensure proper treatment of apneas (fewer costly conditions/complications to pay for downstream).