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[Equipment] Intro! + Rant! + Rage-quit my DME, what should I buy?
#1
Gross 
Intro! + Rant! + Rage-quit my DME, what should I buy?
Hello!  I've been lurking in denial for a while, figured it was about time to actually create an account.

The TL;DR is that I absolutely hated dealing with my DME's business practices so much that I got my physician to call in a "stop therapy" order with them, and returned my AirSense 10 AutoSet after about 60 days of use.  I'm now in the position where I need to buy a machine out of pocket (ouch), and while I'd prefer to pay less money, I'm okay with paying more if it means that I get a machine that is more "future-proof" in case it turns out that I need something more capable.  The ResMed AirSense 10 AutoSet seemed to be doing an ok job for me according to Sleepyhead but I still felt extremely un-rested (more on this below).  I'm an extremely light sleeper and while the exhalation pressure wasn't intolerable, it was a distracting annoyance.  I'm wondering if it would be worthwhile to spend an extra kilobuck for the AirCurve 10 VAuto - that's a huge bump up in price!  Based on my reading, it does everything that my APAP but has higher adjustability for exhalation pressure?  (Even having read several FAQs I'm still struggling to understand the nuances between APAP and BiLevel with the automatic adjustments.)

VERY long story... Hi I'm a 52yo male, 6'3" 225#.  At peak career with poor work/life balance in tech industry at a dying company, its all downhill from here.   Coffee  I've been struggling with apnea for years (first diagnosed about 10 years ago with "moderate" SA, can't recall the numbers), but resisted therapy because I told myself that quitting booze and getting more exercise would eliminate it.  No such luck.  My lack of sleep was finally reaching a point where I was barely functioning and impacting work, so I finally decided to bite the bullet and go do whatever was necessary.  HA!  As if it were that easy - little did I know that everybody from my doctor's practice to the sleep lab to the DME to my insurance company had basically weaponized mediocrity for profit.  This then intersected with one of my (many?) idiosyncrasies, that I generally don't answer my phone, and any voicemail that isn't transcribed to text is ignored.  I get so many spam/scammer calls that it's just unusable.  If a call shows up from a repeatable number, fine, I'll whitelist it, but otherwise they go straight to VM.

After waiting nearly three months for my appointment, I got in to see my highly rated sleep doctor (Berkeley, CA).  Nice guy.  Seemed promising.  Prescribed an at-home sleep study.  Warning sign #1... he said "you might need to keep calling them to get onto their calendar".  Indeed, it did.  When I finally got an appointment with them, went in, and learned that they'd rescheduled me.  They'd "tried to call".  Rolleyes Updated appointment is three weeks later.  The guy who gave me the demo on how to use the equipment had his spiel down, but crikey, it was excruciating.  He was clearly most used to explaining things to elderly people with mild dementia, not highly caffeinated startup execs with meetings to get to.  Anyway, I do the study.  It took three weeks to get the results after many, many calls to the sleep clinic, and then multiple messages to the doctor.  (I first requested my appointment in August 2018.  Got results in January 2019.)

Results... "severe", 36 events per hour.  He prescribes CPAP.  Tells me his office will reach out with info.  They never did.  I left a voicemail after a couple weeks, no reply.  I got busy at work, and forgot to follow up again.

After another couple weeks, I realized that I'd received a dozen voicemails (comically transcribed) from "unknown caller":

“Hello this is _⁠_⁠_ your healthcare this message is to confirm that we have received an order for equipment your order is not ready at this time we are verifying your information to get your order ready there is no reason to return our call you will receive a call from an _⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_ representative within the next five business days thank you for being the best part _⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_…”

“Hi my name is Ellen from opera _⁠_⁠_⁠_⁠_ _⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_ on _⁠_⁠_ like _⁠_ _⁠_⁠_⁠_⁠_⁠_ us message is for Rachel _⁠_⁠_⁠_⁠_ _⁠_⁠_⁠_⁠_⁠_⁠_⁠_ if you think you're adorable medical equipment if you wish you could call us please give us a call back at this number _⁠_⁠_⁠_516-5408 thanks for being the best part of off _⁠_⁠_ house for have a great day…”

“Hi my name is Allen from _⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_ on that occurred in line _⁠_⁠_⁠_ message is for _⁠_⁠_⁠_⁠_ _⁠_⁠_⁠_⁠_⁠_⁠_⁠_ if you see guardians are durable medical equipment if you _⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_⁠_ called just give us a call back at this number um 800-516-___ thank you for being the best part of I'll _⁠_ has _⁠_⁠_⁠_⁠_ have a great day…”

(Those are C-n-P straight off my phone!  Well done, Siri.  I particularly like "adorable medical equipment.)

Keep in mind, I've had no interaction with anyone regarding how the process of getting CPAP equipment works, I don't know at this time what a DME supplier is, I don't know anything.  Just a bunch of messages that I suspect has to do with my CPAP but I'm not sure, and I find it strange that I haven't received anything in the mail or gotten info from my doctor. 

I was out and about one day, go another unknown caller at about the same time that these voicemails seemed to appear, and decided to answer.  The caller mumbles from a script "this is ___ from ____ and we need to verify your information for your medical equipment..."  Okayyyyy.... "please verify your full name?"  "who are you intending to call"?  Uhhh, (he reads back my name).  "What medical equipment are you referring to?"  He says... "I'm not sure, let me check..." and then proceeds to list off a bunch of things, the make and model of the CPAP machine, the mask, the tubing, etc.  Then he says "Uh... CPAP equipment?"  I say ok, yes, I'm expecting to get a CPAP machine, but who are you and what company do you work for?"  He tells me, and "Can you verify your address for shipping?"  "Shouldn't you have that?  I'm not comfortable providing information to people that call me."  He then gives up and says "do you live at (address)?"  I say yes.  He then asks for me to confim my social security number.  I say "HELL NO, why do you need that?" and he says "for the credit application for the equipment rental."

Shock

Ok, so I know you guys have been through this and it probably wasn't unexpected for you, but I naively thought, y'know, I'd get a bill for a machine, the insurance would pay part of it, my high deductible would take it in the shorts, just like my many-thousand-dollar ER visits.  Expensive but.. done.  Not a rental.  WTF.  And the whole scripted dialog was so.. buzzwordy, and one-way, uninformative.  Nobody has told me what the hell I'm getting, yet someone is talking in circles using vague terms and saying "need to this" and "it's important to that".  I'm a reasonably sharp person, and was getting dazed by this call.  I can't imagine how an easily confused elderly person would react... it felt like that's literally what they do, try to bamboozle old people into getting into payment plans for services.

I said "I'm not interested in renting equipment.  How do I just... buy it?"  He said "uhhh.. I'm not sure, that's not my department, you can call 800-XXX thank you for being the best part of ____" and hung up on me.

I was fuming after this conversation, and didn't call.  More voicemails were left, same as the prior ones.

A week later, a box showed up on my doorstep.  I opened it.  It contained a ResMed AirSense 10 Auto.  I was pretty P*ssed off, but on the other hand... here's a CPAP machine, I'm desperately tired, and I didn't have to do any credit application, so I stupidly assumed that maybe I'd won.  HA HA HA.  But anyway, I set it up, start using it, go through the usual n00b struggles, search for whether there's a way to reconfigure it and whether there's a different way to get data off it than MyAir... and find this forum, and Sleepyhead.  More details on my therapy below, but lets get through the administrative hell first.

During my first month of usage, I continue to get twice-daily voicemails from the DME from random numbers and unknown caller, and finally I get one where they say to contact their billing department immediately or else my account will be sent to collections.  Sigh.  I call in, they tell me I owe $$$, and that my contract with them says XYZ.  I say I've never agreed to any contract, never seen any contract, etc.  They go WTF, and escalate me to their manager, who isn't in the office, so it goes to voicemail.  I leave a message.  Another generic voicemail, then a VM from the manager.  I call them, I say I haven't ever seen a billing breakdown, a letter, any description of what I'm paying for, etc.  She says she'll make sure that I'm sent one.  A week later, I get a bill in the mail, finally!  Note that they were already threatening to send me to collections at about Day 35.  The bill does not have any kind of breakdown.  I request a breakdown.  A week later, I get one mailed.  It's SOOOO inflated, it just makes me mad.  After insurance, I still owe $480 for some unknown portion of the machine + supplies.  I don't know how long it's going to be until it's paid off.  They're charging $250 for the "humidifier".  I look it up, you can order it for like $20.  The markup is insane.  The therapy isn't working great (see below), I grumpily decide F this, I want out.  I contact my sleep doctor at the beginning of March, tell him I want 1) to get off this DME ASAP, and 2) send me a prescription so I can just order something online.  After leaving several more messages for him, I hear back mid-June, he says he's issued a "stop therapy" to the DME.  A while later, related, but not obviously to me, my security camera goes off while I'm at work, there's some random dude standing at my door with a clipboard.  Next day, same dude, at my door, with clipboard.  My wife is a little freaked out by this.  This isn't the kind of place where you just answer your door when some random dude is at the door.  Another day, now it's a different random dude.  He calls and leaves a voicemail... he's from the DME, there to pick up the equipment (!)  Just... showing up?  WTF.  Alright, I could keep going, you get the picture.  You had the picture.  Instead of letting Random Dude pick up the equipment, I make an appointment to return it myself.  I tell them its pretty f'ed up to just have someone showing up at my house, and I'm told "we scheduled a pickup appointment for you."  "How would I know this, I haven't spoken with anyone?"  "We would have left a message."  Natch.

Good riddance.

Writing down my whole grumpy reaction to them makes me feel prematurely crotchety.  But hey, I'm partially grumpy because I'm getting crappy sleep.  So:

The AirSense 10 Auto was theoretically doing ok for me by the numbers, I was getting AHI 1.7 - 2.5ish.  But still not feeling rested, sometimes feeling worse than when I didn't do CPAP at all.  I was only getting about 5 hours of sleep and would still wake up several times during the night, feeling wired and jittery.  It felt like my pulse was racing and my BP was high, but I'd measure them and they were totally fine.  So strange.  I'd had a sneaky suspicion that I have both sleep apnea and some sort of undiagnosed anxiety disorder... and that respiration events during the night can trigger some sort of misplaced adrenaline dump into my system.  But... even with AHI way down, I'm still getting these jittery wakeups where it takes me 30-60 minutes to settle down afterwards.  By morning, I'd be all congested (my allergies?) and would need to rip the nasal mask off to breathe at all.  I'm sure I can work through these issues, I just had returned the machine before I'd really gotten into dialing things in.

My plan is to buy a new machine plus try a full-face mask for when I'm in allergy mouthbreather mode.  I was also getting some large leaks out my mouth (which my wife hated, because I was basically blowing a windstorm directly at her!) so I've gotten some lip tape.  I have a whole lot of facial hair going on, so I'm not sure how this will work out.

I'm leaning towards the AirSense 10 Auto again, but per my TL;DR at the start, I'm wondering if it would be worthwhile to invest in the AirCurve 10 VAuto.  It's an unpleasantly large amount of money, but since I don't have to argue with a DME, I kinda want to get the best thing that makes sense.  I also intend to go all-in with Sleepyhead and datalogging and tweaking, might as well have fun with it, I figure.  I have an old Zeo and a Withings sleep pad, so I like the "quantified self" aspect of this.

Advice on the machine?  I'll be back with therapy updates once I get up and running again.

Thanks in advance!
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#2
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
That's quite the tome / ramble. The business practices you related are pretty unusual, especially sending someone to pick up equipment without prior arrangements. Are the doctor and equipment supplier financially connected?

If you plan to buy out of pocket, check Supplier #33 on our supplier list for a low price on a new Airsense 10 Autoset, or if you want to spend near $1000 then the Resmed Aircurve 10 Vauto. Either should do pretty good give your preliminary results. Supplier #2 also has good deals, especially if you want lightly used. Either of these machines will work with the free OSCAR software. Get your prescription in hand so you can order from legitimate sources, and be sure to keep records. Chances are, your insurance will allow you to purchase from an out of network source, and will reimburse you at a lower rate than an in-network medical equipment provider. Your invoice costs will be significantly lower. The Airsense 10 Autoset For Her will be $700 and the Aircurve 10 Vauto is $1400 complete and shipped. If you charm the seller he might even throw a discount code at you.

Maybe we should take this one step at a time. Get your sleep study results and prescription together. Tell your doctor you intend to purchase equipment outside your insurance plan. You can then order equipment. The onlilne provider will confirm your prescription, bill your credit card and by next week you should be all set to go.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
Welcome to the Apnea Board forums. we can and will help you.

If you have SleepyHead charts from your first machine we could look at that and better tell you what we think.

If you have a lot of Flow Limitations on your sleepyhead charts that MAY imply that the greater PS capability of the VAuto may be better for you. If not then the Autoset would be fine. But here we like to work from data much more than guesses.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

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#4
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
if it wasn't so pathetic it'd be funny. sadly, not so uncommon. if I was as good a writer, I could tell a similar story.

there's a lot to reply to; I'll stick with a couple minor thoughts.

jittery awakenings: I've experienced this in two paradoxical situations. note that my thinking is just speculation. in one case I believe I had those odd feelings when I experimented with very high pressure. maybe over ventilation? the other situation I believe was a case of too much co2. there was much talk here about the resmed airfit p10 diffuser clogging over time, preventing proper flushing of exhaled co2. although I washed it fairly regularly, I had not replaced my mask and frame in a couple years at that point. the shakiness stopped after using a water jet flosser on the mask diffuser. fwiw, the shakiness felt internal, not visible.

good luck with tape. I've not been successful due to a full beard. instead I use a nasal pillow mask that to my knowledge never leaks and soft cervical collar to keep from leaking from my mouth and lips as much as possible.

judging by what I learn here, I think it's pretty common that sleep is screwed up by more things than just apnea. once you get your ahi down, or better yet your rdi (to include flow limitations and especially respiratory effort related arousals), there isn't much more cpap can accomplish. if you still feel poorly after getting apnea under control, it's time to start looking at a long list of other possibilities. some can be seen in the cpap data, like my respiratory response to my periodic limb movements. other things are more difficult but not impossible to pin down.
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#5
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
Not much else to be said. Welcome to Apnea Board argh.


What size and color of the DME UnMerry Go Round T-shirt would you like?
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
G'day argh. Welcome to Apnea Board. I think you've set a new record for the best first post rant in quite a long time! Big Grin

Before ordering a machine of whatever sort it's a good idea to review your sleep test data. Often times things show up in the detail that are glossed over in the summary (or ignored by the doctor) that later turn out to be important. If you can please post a copy of the full report including charts and tables - this will give us a baseline to measure progress and may also point you towards one machine or another. (Make sure you redact personal identification items).

Reading through your post I get the feeling that apnea is possibly the least of your problems. You show all the signs of high stress and anxiety, which will do your heart no good. So while getting the apnea under control you should have a think about what else is going on and maybe see a psychologist to address those things.

BTW you mentioned that you feel jittery like you've had a shot of adrenaline - that's exactly what happens when you have an obstructive apnea. Your airway has closed off, you're trying desperately to breathe and a "fight or flight" reaction takes place. Next thing is your adrenal glands dump a big slug of adrenaline into your bloodstream. That's why many apneacs have heart issues such as atrial fib or arrhythmia (which was how my apnea was first diagnosed).
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#7
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
Thanks for the magnificent rant, in which we see writ large many of the small frustrations we’ve felt.

You have some homework now, posting the sleep study and some charts. As others have explained, this will help them make an informed recommendation about the machine you should buy. Once you know what you want, you can get the prescription for it from your doctor.

One small point that may not be clear: a VAuto can do anything an Airsense ResMed 10 Autoset can do, but not vice versa.
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#8
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
Yes, welcome to the Apnea Board argh.  Hi

Wow...

Wow...

What an experience in terror.  Did I mention WOW?

My experience with 6 sleep studies was a 9-month stroll firmly entrenched in the Twilight Zone, but not nearly as frustrating as yours. But I do feel your pain.

Just my 2 cents. I am a 100% out-of-pocket hose-head. I bought the ResMed AirSense 10 ASV (probably not the model you need) from Supplier #2 and they were super nice and amazingly helpful. They had the best price on my expensive Rolls Royce PAP machine. They matched a ridiculously low price on my mask, included a $40 heated hose, and threw in a free 90 deg elbow (back of machine). And after all that, they didn't charge sales tax Shhh  on California sales and they shipped for free.

So bottom line - I saved at least $1,000, Amazing  maybe more out of pocket as compared to buying local.

Ultimately, whatever PAP machine you are prescribed may be better priced elsewhere. But I highly recommend checking Supplier #2 when you are shopping for your best price.

You will find the Apnea Board has an extremely helpful group of highly experienced folks. Grouphug3 Kind of the polar opposite of what you went through with your DME.

All the best on your journey into the world of PAP. Don't give up.
RayBee

  
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#9
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
(09-06-2019, 08:11 PM)Sleeprider Wrote: That's quite the tome / ramble.  The business practices you related are pretty unusual, especially sending someone to pick up equipment without prior arrangements. Are the doctor and equipment supplier financially connected?  

I don't think so, but who knows.  He seemed to have settled into his ecological niche of having to deal with lots of terrible administrative incompetency in every direction.

The employees at the DME machine seemed to be just meat cogs without higher cognitive function.  "The computer said to call you, so I called you and did the thing I'm trained to do.  Your response wasn't in my script.  ERROR."
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#10
RE: Intro! + Rant! + Rage-quit my DME, what should I buy?
(09-06-2019, 09:01 PM)DeepBreathing Wrote: G'day argh. Welcome to Apnea Board.  I think you've set a new record for the best first post rant in quite a long time! Big Grin

Before ordering a machine of whatever sort it's a good idea to review your sleep test data. Often times things show up in the detail that are glossed over in the summary (or ignored by the doctor) that later turn out to be important. If you can please post a copy of the full report including charts and tables - this will give us a baseline to measure progress and may also point you towards one machine or another. (Make sure you redact personal identification items).

Reading through your post I get the feeling that apnea is possibly the least of your problems. You show all the signs of high stress and anxiety, which will do your heart no good. So while getting the apnea under control you should have a think about what else is going on and maybe see a psychologist to address those things.

BTW you mentioned that you feel jittery like you've had a shot of adrenaline - that's exactly what happens when you have an obstructive apnea. Your airway has closed off, you're trying desperately to breathe and a "fight or flight" reaction takes place. Next thing is your adrenal glands dump a big slug of adrenaline into your bloodstream. That's why many apneacs have heart issues such as atrial fib or arrhythmia (which was how my apnea was first diagnosed).

Thanks for enjoying my rant!  :-)  Yeah, I have tons of stress, and I have some sort of anxiety thing going on where minor stresses trigger wayyyy overboard fight-or-flight responses.  In everything.  It isn't the kind of anxiety where I have it going on all the time, preoccupying my thoughts with irrational worries, its always just either a totally random "BZZT!" or attached to trivial stressors, like being stopped at a traffic light, knowing that I need to be one lane over.  C'mon body, this isn't a "tiger might eat you" situation...

I'll post my report later today!
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