From diagnosis to DME with no inbetween?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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PollyCT
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From diagnosis to DME with no inbetween?

Post by PollyCT » Fri Mar 06, 2015 10:59 am

I just got a call from my doctor's office. An aide calling to tell me that the results of the sleep study are in - obstructive sleep apnea. She then said that they had faxed my prescription over to the DME, and I would be contacted and someone would be coming to my house to show me how to use the machine. Wow, how about I have a conversation with my doctor about this first??

I've had zero discussion with my doctor about this. She's my primary care, and at my physical in January she said she thought I should have a sleep study. (I'd been wondering that too - having complained about poor sleep for years, as well as telling her I was a major league snorer.) Took weeks to get the sleep study scheduled, then weeks to get the results. Thankfully that gave me time to surf this forum and start getting educated.

Based on things I learned here I was able to tell the woman from the doctor's office that I needed to make sure the prescription for CPAP mentioned "full data." She groused about it, but I convinced her to talk to my doctor about it. I told her that I'd be living with this machine (literally), and that I needed to make sure it was one I could be happy with. I then went and checked out the site for the DME that they're sending my script to - they sell two brands, ResMed and Respironics. Those brand seem to be two of the top ones, but gee, how about more selection? And if all my training on this is going to be coming from the people who are selling me the equipment, it doesn't seem like they'll be at all objective.

So anyway, I'm feeling pushed into this DME that I've never heard of. I buy everything online, and hate that the Dr's office has some deal with this DME that is forcing me over there. Is this how it's normally done? Do you work with a local supplier first and then send a copy of your script to cpap.com and go from there? Shouldn't I be discussing my therapy with someone from my doctor's office as opposed to someone the DME sends out?

I don't even know what the actual specifics were of my diagnosis - I know I have OSA, but not to what level. Shouldn't they be telling me a level of severity or something?

Sorry, I thought I was prepared to hear the diagnosis, but I guess I wasn't prepared for the first few steps. How does this to compare to other people's experiences?

Thanks for reading!

Polly

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grayghost4
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Re: From diagnosis to DME with no inbetween?

Post by grayghost4 » Fri Mar 06, 2015 11:20 am

That is very simiular to how it was handled for my wife, fortunaly the DME was connected with the hospital and they provieded her with a DS560P which is an auto with full data.
Since then we have learned a lot from this fourm.
You have not mentioned who is paying for your cpap, insurance, medicare, or you!
If you are paying out of pocket, I would suggest you stop now and get the prescription for the DR. and do some shopping. A local DME will probably not be the best place to get it.
If medicare ,,, them procede with the local DME.
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PollyCT
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Re: From diagnosis to DME with no inbetween?

Post by PollyCT » Fri Mar 06, 2015 11:25 am

Sorry Grayghost4, the insurance info would have been good to add! I have United Healthcare through work, but I'm perfectly willing to pay for the machine I want. I also travel for work and make frequent 1 or 2 night trips to NYC. I'm used to throwing all my stuff into a backpack for those trips, and would probably want to buy an extra travel machine that I could keep packed up and ready to go. (If this makes sense.)

Oh, and I work in technology, so bells and whistles are important to me!

Polly

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Re: From diagnosis to DME with no inbetween?

Post by grayghost4 » Fri Mar 06, 2015 11:38 am

Then I would insist on the Resmed arisense 10 For Her with a heated hose. It is an auto machine with full data and an extra program just for women. Then I would wait a while to get a travel machine until you see what happens with your tharapy.

next is the mask ... did you have a titration .. if so what mask did you use ... what pressures did they titrate you to.
If you're not part of the solution you're just scumming up the bottom of the beaker!

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sc0ttt
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Re: From diagnosis to DME with no inbetween?

Post by sc0ttt » Fri Mar 06, 2015 11:44 am

I went to primary for assorted stuff and suggested I might need a CPAP. She gave me the Berlin questionnaire.
Primary sent me to pulmonologist who sent me to sleep study.
Sleep study reported OSA and suggested a nice machine in their report (photo)
Pulmonologist reviewed and wrote me the prescription for the machine the sleep study recommended... fortunately it was a nice one, plus "patient's choice" on other items.
Pulmonologist suggested the DME in the same building but said I could go anywhere, other places would take my insurance as well, and told me how to find out about the secret menu.
Then followup after a month to verify compliance, efficacy, etc.


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Re: From diagnosis to DME with no inbetween?

Post by robysue » Fri Mar 06, 2015 11:47 am

PollyCT wrote:I just got a call from my doctor's office. An aide calling to tell me that the results of the sleep study are in - obstructive sleep apnea. She then said that they had faxed my prescription over to the DME, and I would be contacted and someone would be coming to my house to show me how to use the machine. Wow, how about I have a conversation with my doctor about this first??
It is reasonable to insist that you have a conversation with your doc before starting therapy. Tell the person who called you that you did NOT want your PAP prescription simply faxed to a DME that you've never heard of and that you need to take some time talking to your insurance company and doing some comparison shopping to find a DME that you are willing to work with.

Based on things I learned here I was able to tell the woman from the doctor's office that I needed to make sure the prescription for CPAP mentioned "full data." She groused about it, but I convinced her to talk to my doctor about it. I told her that I'd be living with this machine (literally), and that I needed to make sure it was one I could be happy with.
Good for you!

Seriously, whoever the woman from the doc's office was, she had no right to grouse about the script. But also be aware: Many docs are not sold on the idea of prescribing full data machines either. My first sleep doc insisted that I did NOT need a full data machine and he was totally unwilling to write a script that said anything except "CPAP @ 9cm with heated humidifier and mask of patient's choice." But by shopping around for a DME I was able to find one that was happy to sell me a Resmed S9 AutoSet (top of the line at the time) which they set in CPAP mode at 9cm.

I then went and checked out the site for the DME that they're sending my script to - they sell two brands, ResMed and Respironics. Those brand seem to be two of the top ones, but gee, how about more selection? And if all my training on this is going to be coming from the people who are selling me the equipment, it doesn't seem like they'll be at all objective.
Many DMEs will only sell one, two, or three brands. Some are willing to order something else. For a wider selection of brands you'll probably need to shop on line.

That said: Most people around here do prefer the ResMed and Respironics (also known as PR) brands. These machines are top notch in terms of quality and both work well with SleepyHead (free software that shows you all the data gathered by your machine each night). The manufacturer's software for these machines is also readily available if you ask forum members how to get it.

But even so, you have to be aware of the fact that the most commonly sold ResMed and Respironic CPAPs are the bottom of the line models that do NOT record any efficacy data. And many DMEs will be unwilling to sell you any other model unless the script specifies "full efficacy data". And many DMEs will lie through their teeth and tell you that a PR System One Plus or a ResMed AirSense 10 CPAP that does NOT say "Elite" records all the data you need because see here's the SD card right there and (in the case of the AirSense) there's a built-in wireless modem so that all the data gets transmitted to the DME on a daily basis .... But the fact remains, the PR Plus and the non-Elite version of the AirSense 10 do NOT record full efficacy data. (The PR Plus only records usage; the non-Elite version of the AirSense 10 records usage and generic AHI, but no leak data and the AHI data is not broken down into types.)
So anyway, I'm feeling pushed into this DME that I've never heard of.
My advise is to push back. You are the one who will be sleeping with this machine nightly for the next 5+ years. And you are the one who will have a 5+ year financial relationship with the DME. It pays to shop around and find a DME you actually like. That does require some work: You have to find out from your insurance which DMEs are "in network" and how much the insurance company pays for CPAP equipment and whether they pay by "code" or not. (Don't expect the durable medical equipment coverage to be similar to your prescription drug coverage.) The last think you want is to be snookered into working with a DME that you find out is untrustworthy and unhelpful.
I buy everything online, and hate that the Dr's office has some deal with this DME that is forcing me over there. Is this how it's normally done? Do you work with a local supplier first and then send a copy of your script to cpap.com and go from there? Shouldn't I be discussing my therapy with someone from my doctor's office as opposed to someone the DME sends out?
For the majority of new CPAP patients, this is, unfortunately, how it works: The lab or sleep doc sends the script to a DME you've never heard of. The DME contacts you and brings out a so-called "brick"---i.e. a machine that does not record full efficacy data and tells you it's a top of the line model. The DME brings out a very limited number of masks and does not fully explain the mask return policy. The tech sets the machine up, warns you not to touch anything except the on/off button and tells you how to fill the humidifier tank. And the tech goes on his/her merry way and you're left alone to try to make the best of it.

That's not how it *should* be. But most new CPAP patients have NOT discovered a forum like this. So most of them don't even know full efficacy machines exist or why they should insist on getting on. And a huge number of new CPAP patients get little or no help from the DME when it comes to troubleshooting their therapy.

In my opinion, you should have a chance to discuss your script and therapy with someone in the doc's office before starting PAP. Not that that person will provide much help. You'll also want to know who to call if things are NOT working out. For help with fitting masks, that's usually done by RTs working at the DME rather than someone in the doc's office. But the DME will not be able to help you if the therapy settings are not effective. That requires a change in the script, which requires going through the doc's office. Although with all the new wireless stuff, theoretically the doc can order a script change and the DME can make it through the modem without your needing to bring the machine in. (Of course that also means that the doc and the DME could leave you out of the loop and not tell you that the script has been changed.)

The DME will be the ones who are primarily interested in your usage data: They won't be paid by your insurance if you're not using the machine at least 4 hours per night for at least 20 or so nights out of the first month. And some insurance companies will require more than one compliance check.
I don't even know what the actual specifics were of my diagnosis - I know I have OSA, but not to what level. Shouldn't they be telling me a level of severity or something?
Yes, the doctor's office should have the courtesy to tell you the level of your OSA. They should provide you with a sleep study report, but you may have to insist that they give it to you. The full report usually runs 3-10 pages long and contains a bunch of summary data and a bunch of graphs that show what was going on during the full night.

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Re: From diagnosis to DME with no inbetween?

Post by Janknitz » Fri Mar 06, 2015 12:06 pm

Please read my blogpost "What you need to know BEFORE you meet your DME". It tells you how to select a make and model (models listed are out of date) how to find a DME your insurer will cover, and how to get what YOU want. Tell your doctor's office you want YOUR prescription in YOUR hand and you will take it from there. You do not have to use any particular DME just because your doctor directs you there.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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PollyCT
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Re: From diagnosis to DME with no inbetween?

Post by PollyCT » Fri Mar 06, 2015 12:52 pm

Well you guys are friggin awesome!! I feel so much better already!

I've been reading all your comments (and links). I've called my insurance company, who said I can go to any DME I want, and told me how much it would cost in-network and how much out of network. They also said I can get any machine I want but if it costs more than their allowable I'm responsible for the difference. (Okay by me!)

I've also called my doctor's office and told them I’d like to choose my own DME, I’d like a copy of the sleep study report, I’d like a copy of my prescription, and I'd like to speak with my doctor! I'm waiting for a call back now.

At the sleep study place they put the ResMed Mirage FX for Her on me, and gave me a mask and headgear to take home. Having absolutely nothing to compare it to it seemed okay. (Definitely weird and odd to get to get used to, but it seemed fine to start with.)

I'll let you know how it goes, but I truly do appreciate the support and information. I think I'm back on track now, and feel empowered to take control of this.

THANKS!

Polly

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grayghost4
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Re: From diagnosis to DME with no inbetween?

Post by grayghost4 » Fri Mar 06, 2015 1:21 pm

When you are at the DME getting a machine, also get a nose pillow mask, P10 or Swift FX, or (my favorite) the pilaro Q, since the insurance is covering it . Many of us find the nose pillow mask much more comfortable and less leaks .
If you're not part of the solution you're just scumming up the bottom of the beaker!

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Re: From diagnosis to DME with no inbetween?

Post by bwexler » Fri Mar 06, 2015 2:54 pm

If you order the Resmed AirSense 10 for Her you are guaranteed to get the newest PAP machine with all the bells and whistles, as long as you don't require BiLevel or ASV, which are more advanced for the lucky few who can't be adequately treated with APAP.
Make sure you get the full sleep report, not just the summery. If the script isn't clear enough to ensure you get what you want, have the doctor change it to specify exactly what you want including heated tubing. Heated tubing allows you to adjust or turn off the heat, non heated tubing has no way to turn on the heat. The same is true of APAP vs CPAP.

Good luck.

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Re: From diagnosis to DME with no inbetween?

Post by EmilySleeps » Fri Mar 06, 2015 3:19 pm

I have the ResMed AirSense™ 10 AutoSet CPAP Machine with HumidAir™ Heated Humidifier, and it comes with a great travel bag! I just took my first trip with my CPAP machine, and it was super easy to pack it into the very well designed bag. It was light weight, and I had no problem taking it onboard my flights as a third piece of carry-on (in addition to my briefcase and my purse) since it's a medical device. (I had printed up and brought along the letter for the airlines, but no one asked for it.) Sooo - a long way of saying you probably don't need a second machine to keep ready for travel!

Emily

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Re: From diagnosis to DME with no inbetween?

Post by library lady » Fri Mar 06, 2015 4:04 pm

All of the advice offered here is top-notch, I just want to add, for the benefit of other newbies, that not all doctors just send your RX to a DME. Mine sent the scrip to me, along with a list of DMEs in the area I could choose from. I chose the one operated by the Mayo Clinic, where I get all of my medical care. It is completely independent, and doesn't get kickbacks for recommending one brand over the other. The only machines they carry have full data efficacy. If you can find an independent DME not affiliated with your sleep center/clinic, you might try going there first. Tell all the DMEs you communicate with that you are interviewing several providers. Your machine is not required to have a modem connected; mine does not... though it does have the SD card. When it was time to have a compliance check I was asked to bring the machine in, which I did. They shouldn't need to be able to check your machine usage remotely.

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Re: From diagnosis to DME with no inbetween?

Post by archangle » Fri Mar 06, 2015 4:29 pm

Bravo for a patient fighting back against the medical mafia!

There are useful links in my signature line at the bottom of this post that link to Janknitz's blog and other good info about how to not get screwed in the process.

If it's midnight and a DME tells you it's dark outside, go and check for yourself.

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Re: From diagnosis to DME with no inbetween?

Post by SleepDisturbed » Fri Mar 06, 2015 8:52 pm

Most doctors and DME's are only slightly above politicians and child molesters on the strength of their moral code.

(Maybe a little harsh. But my recent experiences with the medical mafia lends weight to my opinion)

Make sure that you remember that YOU are the paying customer! Don't take any shit from those people. You are entitled to all your test results and copies of prescription by law. YOU paid for them, they are your property.

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PollyCT
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Re: From diagnosis to DME with no inbetween?

Post by PollyCT » Sat Mar 07, 2015 8:14 am

I've been silent because I've reading, reading, reading. You've all posted great info and links.

I still haven't heard back from the doctor's office about my test results and prescription, but I've gone on cpap.com and asked them to request the script from my doc. One way or the other, I'll get it, along with the sleep study.

So, is this crazy... I'm thinking of just getting ResMed's AirSense 10 Autoset machine from cpap.com, not going through a DME or a respiratory therapist at all, using the ResMed Mirage FX mask they sent me home with from the sleep study, and just figuring this all out by myself with the help of this great forum. Is that crazy? Do I need in person assistance?

I don't think my doctor or anyone in her office is going to be particularly helpful. She's a primary care doc in a big practice, and mostly when I call there I talk to a rotating cast of characters. I do NOT want to rely on someone at a DME. That route is not for me.

Thanks!