The day before the DME delivers my first machine

[Kilgore Trout]

Hi everyone,

I found out a week and a half ago that I have sleep apnea, and this whole thing's been a bumpy ride. My GP sent me for a sleep study due to snoring and daytime sleepiness (I've almost fallen asleep driving to work), and after the first night wired up a la The Matrix, I got a call right away telling me to come back for a titration, that I was ~30 AHI, low O2, twitching legs, grew a tail, etc. I apparently tolerated the cpap well that night, because when I called back to find out the next steps, or if I should get a consultation from Dr. Sandman (I didn't even know the sleep doc's name--never met him), and whoever answers the phones informed me, "oh yeah, you're getting a cpap." My reaction: "Oh, ok. Wait, what?"

... and that's it. I haven't sat down with a doctor to talk about it, I just feel like this machine's being shoehorned into my life. Hell, is it too much to ask for someone with a wall full of diplomas to tell me it's going to be alright, and maybe it's not ideal, but this is my new definition of a night's sleep?

The DME's coming tomorrow to give me the equipment listed below, and I'm trying to get a hold of the snooze doc to get a nose mask tacked onto the script so I have some choice about how I'll be masking up from night to night, but even getting the guy on the phone's been a pain.

I guess I just needed to complain a bit. I'm not ready for this, and I'm freaking out a little. I know I shouldn't call the DME and tell them the deal's off, but it's hard to hold back.

[snardo]

Hang in there! It sounds like you haven't exactly had the best experience with the sleep specialist and such, and that can be a huge turn off. Sorry that you've had such a bad go of things so far. I would excourage you though that things will get better. It looks like you've got a data capable machine, so that's a good start. I don't even know if this is possible, but you might see if the DME will let you try a few different masks to get an idea of what might work best for you when they come. Other than that, I can only say that once you get used to it, it's really not so bad. I think my biggest hurdle was worrying about my appearance with the contraption stuck to my face. But really, it's dark and I'm asleep when I'm wearing the thing, so why should I care? It's not like I'm going to fancy parties with my mask on.

I actually had a really nice sleep tech at the sleep lab I went to recently for a follow up study. I had brought my own mask (was already on therapy, but it seemed like it was losing some effectiveness), but the technician brought out about half a dozen diffent styles of mask to try on before I went to bed for the night. It was very helpful to get a better idea of what's on the market and how each one fit my face. I'm not sure if I'll change or not, but at least now I know what my options are.

[robysue]

... and that's it. I haven't sat down with a doctor to talk about it, I just feel like this machine's being shoehorned into my life. Hell, is it too much to ask for someone with a wall full of diplomas to tell me it's going to be alright, and maybe it's not ideal, but this is my new definition of a night's sleep?

Much sympathy for how you feel. It is crummy when you are made to feel that you have no opportunity to discuss the full implications of the diagnosis, guidelines for whom to call when you do have questions about how your therapy is going or when you run into problems trying to make it work, and before you have an opportunity to do any comparison shopping for machines etc.

The DME's coming tomorrow to give me the equipment listed below, and I'm trying to get a hold of the snooze doc to get a nose mask tacked onto the script so I have some choice about how I'll be masking up from night to night, but even getting the guy on the phone's been a pain.

First, before you do ANYTHING else and definitely BEFORE that meeting with the DME tomorrow, go take a visit to Mask Arrayed, a blog by a user here named Janknitz. You want to go to the link titled What you need to know before you meet your DME. Take the time to read and re-read this material carefully. It will prepare you in the case your DME tries to pull a fast one on you.

Second, your equipment lists a PR System One REMstar Pro CPAP Machine with C-Flex Plus. When the DME comes to set up the equipment, double (and triple) check to make sure the word PRO is written ON the top of the machine. If the machine only says PLUS on it, tell the DME you are refusing delivery because you were promised a PRO (which gathers full efficacy data) instead of a PLUS (which only gathers compliance data).

I guess I just needed to complain a bit. I'm not ready for this, and I'm freaking out a little. I know I shouldn't call the DME and tell them the deal's off, but it's hard to hold back.

I may be in a minority around here, but in my humble opinion: If you are NOT comfortable with the DME that has been THRUST into your life and if you have NOT had a chance to talk with your insurance company about how much they will cover, how often they'll pay for the "consumable" replacement parts, and know little or nothing about whether you can and are willing to comparison shop between DMEs that work with your insurance company, then calling the current DME and saying you need to make a few phone calls before accepting the equipment and signing the contract is NOT unreasonable. But then FOLLOW UP and get yourself set up with a DME and equipment you ARE comfortable with right away. And even call the sleep doctor's office and tell them you NEED to sit down with a doctor (or PA or nurse practitioner) to discuss the particulars of your diagnosis and the implications of your proposed treatment before you are comfortable signing (expensive) contracts with the DME and getting your equipment.

[mcdover]

A physician/ sleep lab that was ONLY concerned about your healthcare, would have given you a list of providers and their contact info. The question you need to ask now is, what is the affiliation with the referral source? Was you info and rx sent to a company because they are good, or because of a financial reason?

[Janknitz]

I would be very surprised if you ever hear from Dr. Sandman.

Dr. Sandman is in the business of sleep medicine, not in the practice of sleep medicine because he has any particular calling to assist patients with sleep disorders. For Dr. Sandman, it's all about money, not your health, and he considers his "customer" to be your PCP from whom he gets his referrals. You are NOT his customer and he doesn't want to waste his time with you.

This is a pretty typical scenario--seems like about 50% of the people here go to sleep labs run this way. Your PCP makes a referral to the sleep lab. The Dr. Sandman owns the sleep lab and makes the big bucks from the testing, not the treatment of sleep apnea. He makes money on the testing and interpretation, not on the followup. Dr. Sandman does not make any money talking to you or assisting you personally, so he doesn't want to ever talk to you. You are supposed to go back to your PCP (who probably knows little or nothing about machines, masks, and DME's) for that kind of care.

As far as managing your therapy to make sure it works for YOU, you're going to be on your own, but you sound like a smart guy who can handle it with our help.

The System One Pro is a good machine, but as Robysue pointed out, make sure they don't pull a switcheroo and give you a Plus instead of a Pro.

You can have any mask you want, but be aware that your insurance is likely to only pay for one at a time, and how often you can switch or replace it depends entirely on your insurer, so you should CALL your insurer to find out the replacement schedule (don't rely on the DME to give you correct information about this). If you have Medicare and a supplement, there is a standard replacement schedule.

If the mask you start out with isn't working, the DME should swap it out for another within 30 days and another and another until you find the right mask. The mask is the key to using the machine--if the mask is uncomfortable and leaky, you're not going to want to use this treatment.

Unfortunately, since they didn't give you a choice of DME's, you didn't get a chance to do your homework and check out the DME's mask policy ahead of time to make sure that they will do the swapping until you find the right mask. If you're not stuck with Crapria and their drop shipping delivery system (which means your stuff is already on the way), you might try calling the DME to find out what their policy is and whether you really want to do business with them or not.

What they won't tell you is this: the major mask manufacturers all have return programs so that if a mask isn't working out and you return it within 30 days, they are credited for that mask. BUT it takes some paperwork, and most DME's are lazy and don't want to do the paperwork, so they will try to limit or completely prevent you from changing masks if the one you start with doesn't work. A good DMe will have a liberal return policy until you find the right mask.

If you have the financial wherewithall, you might ask your PCP to write a script for the "mask of patient's choice" which you can then use online for much better pricing on buying whatever you want (our hosts offer return insurance so you can return a mask that doesn't work out), or you can buy off an auction site like cpapauction.com (run by our hosts). But your first mask should be properly fitted by the DME (like they are going to be able to do that if they are drop shipping it ) and swapped out until you find the best one for you.

Even though your equipment is on the way, my "What you need to know before you meet your DME" will have valuable info about insurance coverage. You should STILL call your insurer to find out if you must rent or can purchase the machine and what DME's to use if this one becomes problematic.

[Kilgore Trout]

Thanks for the great replies everyone... you'd think that as a skeptical person by nature (and reader/listener to may science & skepticism blogs and podcasts) I'd have my crap-detector with me, but I guess in my rush to not forget my pillow on the way to the titration, I left it at home.

Crap-detector: recalibrated and equipped!

@janknitz, I actually read your blog entry the other night... I've been lurking for a few days It's really helpful! I was a little shell-shocked when I had the DME rep on the phone yesterday, and she told me the script has to say something specific, or else the DME picks the machine. That blew me out of the water a bit and started the alarms ringing. I'm going to make some crib notes from your blog post for my upcoming round of calls this afternoon.

@robysue, Your reply really resonated with me! Thanks for the reminder--I'm in control, and nobody gets paid unless I'm satisfied with my treatment. I'm calling the DME and hitting the brakes. My PCP's always had my back before, I'm hoping she will help me out with writing a script for the equipment I want. Apparently, there's an in-network DME down the street from my house. I'm calling them first, so I can walk down the street when there's hell to pay

In other news, my insurer spent a lot of time on the phone with me explaining what they cover and what they don't, and FWIW, I had heard about the 30-day mask exchange.

I'll update later and let you know how the struggle is proceeding. Gotta run to a meeting, and then it's time to push back!

[Slinky]

Right on, KilgoreTrout. You're pretty much up to date on how to handle this situation, your plan sounds good. Your health, your therapy, your sleep, YOU are paying for everything, whether thru insurance or out of pocket is immaterial, YOU are still the one paying for it.

If this first DME torques your jaws in any way - and your insurance allows you the option of a couple of more choices in local DME providers - I'd try holding out for an auto-titrating PAP, an APAP, like the PR SystemOne Auto w/A-Flex or the Resmed S9 AutoSet ... you might be able to get one, or that leaves both you and the DME provider the negotiating room to settle on the Pro or the Elite instead of an APAP or an entry level compliance data capable only CPAP. The DeVilbiss IntelliPAP Auto and the Fisher & Paykel ICON Auto are two other fully data capable APAPs.

[gasp]

Looks like most everything has been covered so I'll just say from what you have written so far

Crap-detector: recalibrated and equipped!

it appears as if you will be just fine : )

I was a member here for a few months before getting my machine and learned so much that contributed in getting a machine that works so well for me, eventually a mask, and many other things too.

[Kilgore Trout]

The initial results of operation "take the power back" were fruitful. When I called the American Sleep Medicine, I told them I wanted a copy of my prescription, and both of my sleep study reports. I said that since I hadn't met with any doctors since my PCP, and nobody's telling me anything other than I've got to "mask up" every night for the rest of my life. I want to follow up with my PCP with all the information to make sure we were moving in the direction I wanted. I also said I wanted to pick my own DME which carried the equipment I wanted, wasn't so far away and would be a little more forthcoming with information.

To my surprise, they offered me an appointment with Dr. Sandman to sit down and talk everything through, including my concerns about equipment and treatment. In addition, they gave me the contact information for three more DME's in-network with my health plan, including one in my town (of course, I verified). They're mailing me a copy of all of my records, and they verified my PCP has received all of the information they have.

Canceling tomorrow's appointment was uneventful... I told them I'll be back in touch if I decide to move forward with them, they were taken aback but didn't give me a hassle. I'm partially wondering if they'll show up at my hose tomorrow anyway.

I'm still waiting for a call back from my PCP, but this is off to a good start. It's surprising how much better you can feel about everything once you take the reins. I'm so glad I posted; if I'm going through all of this nonsense, it's going to be nonsense on my terms.

[Janknitz]

You go, Kilgore. I love to see INFORMED newbies--nobody is going to put a sucker sign on your forehead

[LinkC]

Good job! You got the bull by the horns!

It sounds very suspiciously like Sandman is affiliated with that DME. Not necessarily a BAD thing, but you need to be sensitive to the possibility his recommendations may be tainted by his profit margin. Keep 'em ALL honest!

[Breathe Jimbo]

I'm partially wondering if they'll show up at my hose tomorrow anyway.

"Sorry, but I cancelled this appointment... Just out of curiosity, which machine did you bring?"

[Kilgore Trout]

"Sorry, but I cancelled this appointment... Just out of curiosity, which machine did you bring?"

If they happen to show up anyway today, I'm definitely using that line.

Last night my PCP called and we talked about my sleep study results, and my options. This was the "I don't have great news" conversation from someone who cared that I'd been missing. The level of concern in her voice when telling me how my O2 saturation drops so much, that this is really important... it made all of this feel more essential than it did before. I mean, I knew it was important, but there's more gravity now. She said she wants me to talk to the sleep doc about my equipment concerns, and if I still don't feel right, we'd find me a new sleep doc to work with.

That puts me in a holding pattern until Friday morning when I meed with the Sandman. Right now, my biggest goal is to get the APAP version of either the Respironics System One Pro, or the Resmed S9 Elite. I'm leaning towards the Respironics machine because I want the Flex option. I read the whole Wiki article on AutoPAP, and I want to have the option to have the potential for a more comfortable experience. Even if we end up shutting it off and going straight CPAP mode, I want the choice.

I was thinking this morning how after my titration sleep study, I didn't have bags under my eyes for the first time I can remember. I want to get the ball rolling on this. Even if I don't feel better for some time, my PCP reminded me that my years of asking if anyone else wanted the last slice of pizza puts me at enough risk for heart issues; I don't want sleep apnea or anything else to close the gap.

Thanks for all of the support everyone, it really means a lot to have people to talk to who've been there.

[cflame1]

That puts me in a holding pattern until Friday morning when I meed with the Sandman. Right now, my biggest goal is to get the APAP version of either the Respironics System One Pro, or the Resmed S9 Elite. I'm leaning towards the Respironics machine because I want the Flex option. I read the whole Wiki article on AutoPAP, and I want to have the option to have the potential for a more comfortable experience. Even if we end up shutting it off and going straight CPAP mode, I want the choice.

This means that the machines that you want to choose from are the Phillips Respironics System One Auto with AFLEX (this one has more flexibility as can run either AFLEX or CFLEX), the Phillips Respironics System One Auto with CFLEX, or the S9 Autoset

[Slinky]

Who has the DELIGHTFUL sense of humor here??

my PCP reminded me that my years of asking if anyone else wanted the last slice of pizza puts me at enough risk for heart issues;

You or your PCP? I LOVED the comment.