De-lurk, greetings, thank you, observations

[Fats Drywaller]

Hello.  A newbie here.  Sorry about the length of this message, but it is a typical newbie bunch of spewage, getting it out of one's system.  Was diagnosed with OSA a few months ago, had a sleep study done (ugh, what a tedious PITA ... confined by all those wires, I felt like I was Dracula lying supine & immobile in his coffin), and exited the clinic wheezing a sigh of relief and clutching a brand-new Rx for 15 centimeters of H2O (should have been ethanol).

Have finally got around to doing the DME dance, after some annoying bureaucratic delays during which, having the CPAP Rx and being in the very unusual situation of having a recent windfall of disposable cash, I bought a machine & mask on my own (and did a pretty good job).  This post is partly a thank-you for all the great information, because that has let me get an excellent start on the entire hosehead trip, which does take some getting used to (argh, does it ever).  Before doing some browsing here, I had known enough, being a former computer geek/techie, to carefully research the machines themselves and to do a lot of window-shopping, but I was clueless about the various details of hassling with the clinics & doctors, the DMEs, and the insurance providers.  The advice, FAQs, reviews, and war stories here are invaluable.  Way awesome.  It's all much better than any existing book on the subject for a general readership, but that's not surprising because the technology changes so fast that it would be impossible to keep a book up to date unless one were to use the Nolo Press or O'Reilly method of issuing a revised edition every year or two.  (That could be a fun project for some expert out there who is a good writer and is retired with too much time on his hands.  Probably not profitable, though.)

One main point, and I'm sure this is about the hundredth time you've heard this, is that being forewarned & forearmed, I was able to prevail upon my DME, the first one I've ever dealt with, to give me what I want, which is (and you know this is also an old story) slightly above the minimum that I need according to my current Rx.  Planning for hypothetical changes in the therapy, to avoid having to do the obvious & predictable kinds of machine upgrades over the next five years (like going from straight pressure to APAP), is an excellent idea!  So I was able to get a very slightly used (16 blower hours; OK with me) A10 Autoset and my choice of mask (Dreamwear) at no cost to me.  Judging by the war stories here, my DME is actually quite good so far (knock fingers, cross wood ... or something like that), as DMEs go: although I did have to argue for just a few minutes in favor of the Autoset because my Rx says straight pressure, this outfit seems not to be a strictly money-grubbing company (or maybe it's just having a good, profitable year).  So I could be much worse off.

The device that I bought on my own while I was waiting for the paper-shuffling dance to conclude is a "new old stock" De Vilbiss IntelliPAP DV54-HH with humidifier, APAP, EPR, SD-card option, and most mod cons, which those of you who have one know very well is an excellent machine, vastly underrated merely because it doesn't have either of the two oh-so-fashionable brand names.  (Yes, it's a discontinued product.  However, I didn't want an IntelliPAP 2, for good reasons that I won't bore you with in addition to price.  What happens to the De Vilbiss brand and products from now on remains to be seen.  They were great while they lasted.)  It also cost several hundred dollars less than the two latest-and-greatest APAP poster children do: price point $500 rather than $900, which is a big deal to me when I'm paying.  However, of course I lusted after an A10 Autoset; who wouldn't?  So I also have that now, with the DV54 as a backup.  I've been impressed by the A10's pretty good algorithms for everything imaginable, and have been slightly more comfortable with it; in that regard it is one cut above the DV54, as it should be because of the price (even though that's often not how things work IRL).  With regard to hardware, the only remaining frontier for me is bi-level with a delta greater than 3 cm, which I don't need now and am guessing, or hoping, I won't need.  So far I'm using the A10 in constant-pressure mode because I'm in the compliance period and am collecting data for the Central Scrutinizer.  Once the compliance period is over and the DME & I have divorced, of course I'll switch to APAP, as I had been using for a few weeks on the DV54, in a narrow range around the Rx pressure.  I don't have reliable AHI numbers yet, mainly because of masks being not quite right yet, but I have seen treated AHIs under 10.  My untreated AHI was so high that I don't even want to mention it by name, which is why I was in a hurry to get a machine.

With regard to mask designs, I happened to come along at a good time, because I really dislike masks that make me look or feel as if I were in the pilot's seat of an SR-71 Blackbird.  Simpler is better; lighter is better; smaller faceprint is better; one-strap headgear seems best at first glance.  So my first choice of mask was a Brevida, which I bought on my own and still like.  From the DME I got a Dreamwear Nasal, which I chose because of not having read all the reviews of it and therefore not knowing that it's defective as designed ... but fortunately it can easily be converted to the (some bugs fixed) Dreamwear Gel Pillows, which I'm about to do in the next couple of days.  The DW Nasal's cushion is, IME, no good at all for side-sleepers.  At first I was using a size that was too large, but even after I fixed that and went to cushion size S despite being L all over including nose (I guess my nostrils must be small, he sniffed), I was getting intolerable leaks.  I assume that the gel pillows will be the cure, along with the size-L Dreamwear frame that I have on order.  If not, then oh well, live & learn.  (Potentially, I could return it to the DME, but I don't want to.  For masks, the expense is relatively minor AFAIC even though they're all disgustingly overpriced; also, the fewer hassles I have with the DME, the better ... even if a mask swap is in the contract.)  My next mask purchase in a few months, no surprise here, will be a P10 so I can find out whether it deserves its rave reviews.

But enough about me.  The main thank-yous that I can think of are:

• To the contributors via both board and wiki who have written FAQs and tutorials about dealing ("politely but firmly", as the saying goes) with DMEs and insurance providers.
  
• To everyone who has contributed technical information, documents, and useful reviews ("useful" meaning having good tech inf or insights, or maybe even warnings of the caveat-emptor variety, up to and including "Run away screaming").
  
• To Supersleeper and anyone else who maintains the library of PDFs and mails out copies on request.
  
• To all the helpers-of-newbies, answering questions and interpreting charts and doing hand-holding.
  
• To the maintainers of the Supplier List.  Not only are window-shopping and price comparison essential with major purchases, and not only is it important to be told what companies are reliable and have good customer service, but I was also very glad to learn of the existence of Supplier #2, which is excellent and has been a big help.  To me, it's not only about used equipment, but about "new old stock" as well: devices and components that are at least one generation back from the state of the art but are still perfectly viable and worth using if one does not have to own the latest & greatest for bragging rights.  (For instance, if I couldn't have got an A10 Autoset from my first DME, I was willing to settle, reluctantly, for a new-old-stock S9 Autoset with humidifier from that DME, before playing the card of threatening to go to a different DME, which would have been a time-consuming hassle for me.)
  
• To Sleep87 for the excellent post "Semi-permanently disabling modem in Resmed Airsense 10".  For the benefit of anyone reading this who can use that how-to article and who hasn't done so already, photos to go with it were provided by the same person.
  
• To the person who provided the DV54 service manual in the Private Files section: not a common or garden-variety document.  I hope I won't ever need it, but it's good to have it just in case.  I happened to notice it immediately after buying a DV54, which was a fun coincidence.
  
• To the reviewers, who panned the HDM Z1.  When I was shopping for a machine to buy on my own, at first I thought it would be best to get a travel machine and use it all the time, even when not traveling: one size fits all (he said optimistically and naively).  But none of the four miniature machines available has what I need.  The Z1 comes quite close (one requirement is an LCD so that no computer or phone is needed), but the reviews made me realize that it's a lemon and is not worth anywhere near its absurdly high price, which ratchets up to insanely high when you include the battery and its pod.  The pioneers who bought the thing and reported on it have done us a huge favor by saving the rest of us the expense.
  

On a different subject, I also can't resist doing a little bit of ranting about the generally low quality (as perceived by me in my limited experience) of medical personnel in the sleep clinics.  I think I'm lucky to have a main sleep doc at the clinic who is OK, reasonable, polite, accommodating, non-snotty, and probably (I have no evidence to the contrary) competent.  However, that doc does a lot of delegating (which is why I can't really say about the competence), and one or two other docs and one or two techs have not impressed me as being very knowledgeable, and in a couple of cases their snottiness index was off-scale high.  What makes these self-righteous clowns think that they're God Junior?  Their oh-so-superior attitude makes me wanna puke, and then it makes me want to give them a good face-to-face flaming and ask them (especially the young pups, wet behind the ears) if this is how they plan to get and keep patients over the course of their careers.  However, in the interests of getting my Rx & machine as quickly as possible, and with the comforting knowledge that "This, too, shall pass", I have kept silent on that subject until now.  Anyway, I guess I can answer my own question: they think they're God Junior because most patients tend to be ignorant idiots, which is what the docs and med-techs are used to dealing with many times per day; also because under our current broken system, patients are not the customers: the insurance companies & HMOs are the customers.  And if the customer is always right, where does that leave the patient?

As long as I'm up here behind the mic, I also want to mention that "You will now be taken back to where you came from" is a potentially useful memento mori, something to be reminded of so that we can all carpe diem and so on (along with figuring out what in one's life is useful and what can be dropped with no regrets, which is a game that we oldsters indulge in when we think we might have one foot in the grave), but I suggest that the wording should be changed to "You will eventually be taken back to where you came from" in the hope that it won't induce a heart attack or anything like that.

Cheers ...

[JesseLee]

Welcome to the club!

I think I agree with everything you've said here. Glad you had your act together when you went to the DME.

And, I don't know how your DME will respond, but I openly tell mine that I change settings. My prescription says APAP 7-20 and I use a bilevel machine and change settings and do what I wish. The DME doesn't give me any flack so long as I register the 80 percent per month on any one of my machines. Even the one time I didn't make compliance they didn't say anything about using different machine or what the settings were, I just had to have the time in. I think she told me to quit playing around and be a good boy.
Which I am lucky, I can choose my DME provider and if I don't like the way they act, I'll go down the road and get a new one.

And have to add that I didn't make compliance because the RT couldn't figure out how to get all the data onto one report that they could file with the insurance company. If you use multiple machines they won't add up to the time on one sheet so they won't spend the time to do the math. I was compliant, just not in the way their system will recognize.

[Fats Drywaller]

And have to add that I didn't make compliance because the RT couldn't figure out how to get all the data onto one report that they could file with the insurance company. If you use multiple machines they won't add up to the time on one sheet so they won't spend the time to do the math. I was compliant, just not in the way their system will recognize.

What a bummer!  Just another example of how the system is often broken in various ways, even though they're sometimes small ways ... square pegs into round holes, that sort of thing.

As long as we're on the subject, I'll mention that I'm both lucky and unlucky to have Medicaid as my insurance outfit, also known as insurance for dirt-poor folks (for however much longer it lasts before the Fascists finally have their way with it): majorly lucky for the reasons that all Medicaid patients know and extremely appreciate if they have any sense (mainly: premiums, deductibles, and co-pays all zero, and there's one for Ripley's Believe It or Not! ... BC/BS victims, eat your hearts out), but minorly unlucky in this case because it turns out that the CPAP compliance period mandated by the Medicaid bureaucracy thanks to our wunnerful [unmentionable] [censored] [epithet deleted] legislators is (get this!) ten months at a minimum of five hours per night (not four).  ISTR that the minimum number of nights is 70%, but I'm not sure and I'd have to look it up.  For me, even meeting those requirements should be OK, no problem after the first couple of weeks once I've got a completely comfortable mask, because the only alternative, being fatigued all the time, is much worse.  And, in fact, life-threatening.

Another point about Medicaid coverage for CPAP is that the replacement schedule for mask supplies, machine filters, and hoses is very stingy compared to the Medicare schedule, which I think the private insurance companies also use.  To me, that's a relatively minor point although not negligible.

[Fats Drywaller]

By the way, just for the benefit of the other cat-lovers here:  That's not a photo of my cat (it's a photo that I got from a gallery on a web site), and I would never let a cat get that fat, or fat at all.  My current furball is a good healthy weight and is very active and athletic, as past furballs of mine have also been.  Just in case anyone was wondering.  OK, now I'll sleep better.

[mesenteria]

I enjoyed your post, Fats.  I think that some of us are at a stage of life where we know better than to roll over or take 'it' lying down.  I also spoke frankly about my druthers to the DME and we got along quite well.  It helped that, like you, I quickly established that I knew more than her typical new customer knows.  It set a tone for us both....early.

[Mosquitobait]

Well, that was quite an introduction, but FWIW, the Devilbiss brand is excellent. I had planned on getting one as my backup (I vaguely recall it wasn't Sleepyhead-ready at the time) but a better deal came along in the used market.

Yep, I have 2 tubby cats. In a household with 5 cats, keeping them all slim and trim doesn't always work as well as you want.

I too have had my issues with Dreamwear. I love it, but some nights I yank it off and switch to another mask.

[SarcasticDave94]

Welcome to Apnea Board. Congrats on a well documented initiation to APAP therapy, and for besting your DME. Best to future overall and specifically mask selections.

[Fats Drywaller]

Welcome to Apnea Board. Congrats on a well documented initiation to APAP therapy, and for besting your DME. Best to future overall and specifically mask selections.

Thank you, Dave!

[SarcasticDave94]

Quite welcome. Join us at AB's break room for coffee sometime...

[Hydrangea]

Excellent! And welcome!!