Upcoming Strategic Decision

On Thursday I'll be going in to see my sleep doctor (neurologist) to get the results from my titration study and to get my prescription from him for equipment. One hour later I have an appointment with the first DME resp. therapist. I want to have my negotiating position all settled beforehand for a couple of reasons. First is that the temptation will be great to take what is offered since the prospect of further wait is very unpleasant. The second is that my ability to think on my feet in real time is somewhat diminished from earlier days. Consequently, a little advice from the experienced would be appreciated.

My facts are as follows. I have uncomplicated, severe obstructive sleep apnea (AHI: 74, AI: 51), and am otherwise fairly healthy. I have insurance coverage which has lower copays and deductibles for using in-network DMEs for equipment. However, I can and will buy whatever I need to buy.

I do not yet know what my titrated pressure was. But I infer from the fact that there was no discomfort during the entire night of my titration study (slept well, woke up twice), that my therapeutic pressure is fairly low. I may be mistaken about this. They used a Resmed VPAP machine for my titration, but I assume they wouldn't use the more exotic features of the machine unless necessary, and that it was used in straight CPAP mode. I know for sure we started out the night at a setting of 6. Why don't I know more? Well, the technician from the titration was pretty un-talkative. But let's assume that my therapeutic pressure is fairly low, say under 10. I can have a fallback position worked out for if it doesn't come in low.

The two local DMEs I've kind of looked into (checked out their websites and whatnot) seem to primarily stock the Resmed line of machines, which is fine by me. My decision kind of boils down to the following. They will begin by offering me the Escape, which I will decline. I will insist upon at least the Elite II. Full data capability is non-negotiable. But the question is, is it worthwhile to fight for getting the AutoSet II? I can feel out the doctor about specifying the Autoset II in the prescription, but maybe that would be unreasonable of me to push for, given my circumstances. This doctor has been very obliging and decent so far. When I was talking to him last week about getting the data from the sleep study, I mused that a hard copy of the raw data likely wasn't even printed up, and if it was, the hospital would likely charge an arm and a leg to get me a copy of it. He said that in fact, there is a paper hard copy (30 seconds per page of PSG) and he would get me a copy of it for free. Dude's a sweetheart.

But it is the added flexibility of the AutoSet II worth walking away from the local DMEs to purchase online? And does it make more sense to hold out for auto if you need higher pressures?

brain_cloud wrote:But it is the added flexibility of the Autoset II worth walking away from the local DMEs to purchase online? And does it make more sense to hold out for auto if you need higher pressures?

Yes!! But as long as you get your doc to write "Autoset II" on the Rx, you won't have to argue with the DME (or at least you shouldn't have to argue with them.)

I was titrated at 7cm and given an Escape. I fought for the Elite II, and the data helped in tracking down problems. I then bought my own AutoSet II out of pocket to self-titrate (expecting to use the Elite II as a backup machine). But ... although I did better on APAP, my doc wasn't satisfied with the results and ordered a trial on the VPAP Auto 25. I felt so much better on the VPAP, that my doc changed my Rx. I do OK on APAP, so I'll keep the AutoSet II as a backup. But ... I do best on auto VPAP.

BTW, my pressure on the Autoset II ended up being 11-16cm, even though I was titrated at 7cm! Titrations are not perfect, so I find having an auto is invaluable for self-titrating ... and some of us do better with a range of pressures. Further, your pressure requirements may change over the years, and an auto is the best way to find out what the correct pressure is, short of having to have another sleep study.

Remember, you'll be "stuck" with whatever you get for perhaps five years or more, so get the right machine from the start. IMNSHO, that's a more flexible machine. The Elite II is a fine machine, but the Autoset II allows you to run in APAP mode as well as CPAP. It's not much more expensive than the Elite II, so why not let the DME get a little less profit? This is about your health, not their bottom line ... as far as you're concerned, that is.

If your doc's been obliging, I'd just ask him to write the Rx for the Autoset II. I do well enough on APAP, that had I started out with that machine, I might still be using it. But ... I had enough difficulty that my doc wanted to be sure, and we discovered I do even better on auto VPAP.

Anyway, welcome to the forum. And good luck with your doc and those pesky DMEs!

One approach would be to question the doctor closely about whether you have a big difference in necessary pressure between side and back, or between REM and non-REM. If you do, then you can ask him to prescribe the AutoSet on the logical basis of needing different pressures at different times of the night. That may impress him more favorably than telling him you want to self-titrate, which he probably thinks is his job. If the answer is no, then there is less to lose by settling for the Elite, which is pretty nice anyway. You can still ask the DME.

Good point, PST.

But ... I didn't mean to suggest anyone tell their doctor they wanted to self-titrate. I just wanted to show how it could be of benefit down the road ... or if the OP ends up having struggles.

Hi Kat. I posted before seeing your post, and didn't mean to imply that you were suggesting that the OP tell the doctor he wanted to self-titrate. It might work, though, if you knew that your doctor was very, very lazy. "Give me the Autoset, and I promise you'll never hear from me again."

brain_cloud wrote:First is that the temptation will be great to take what is offered since the prospect of further wait is very unpleasant. The second is that my ability to think on my feet in real time is somewhat diminished from earlier days. Consequently, a little advice from the experienced would be appreciated.

You are wise beyond your years. Many feel insulted if you suggest the ability to process is impaired. But the fact is - IT IS. Understanding that is half the battle.

It sounds like you have a good doc. I would suggest the make & model specific script to avoid any problems with the DME. Be sure to choose a machine you can get the software for. Don't be surprised at all if you have a higher pressure and require a different machine.

An auto is always worth pushing for. Don't even tell your doc it's an auto just let him know you have researched it and maybe even let him know you have the software?

Good Luck

I am going to make a different suggestion here than what has been said so far. That is, have your doctor write a generic prescription, but one that specifies exactly what features the machine needs to have. For instance, ask for an auto-adjusting CPAP machine, with full therapy data capability. Ask for a little more machine than you really need, so you have some 'reserve' in case your therapy conditions change (and most people here report it does in time). There are a lot of good machines out there besides the Autoset II (unless this is really what you want). This ensures that you get the features you really need, but does not lock you down to a specific machine. Ask for 'mask of patient's choice' so you can pick and choose-- else they will give you exactly what the doctor prescribes, and you might need a prescription change to get a different mask.

IMHO, if you can avoid using a DME and instead ordering online, the money you pay out might be 'saved' in avoiding aggravation in dealing with a recalcitrant DME.

Make sure you get a copy of your prescription, as well as the sleep study.

Good luck!

Listen to the Lion......he roars the truth.

Gerald

Brain-cloud, have you given any thought as to what mask you're going to get????

Getting the right mask is just as important as gettiing the right machine.

Make sure your doc writes the Rx out as "patients choice of mask" and not for a specific mask of his choice, as MY doc did!

Komodo wrote:Brain-cloud, have you given any thought as to what mask you're going to get????

Getting the right mask is just as important as gettiing the right machine.

Make sure your doc writes the Rx out as "patients choice of mask" and not for a specific mask of his choice, as MY doc did!

They gave me a ComfortGel Nasal for the titration, which was comfortable and seemed to work pretty well, although ocasionally air would puff into my cheeks and out my mouth. But I thought I would start out with that one or a similar nasal, and try to control mouth leaks with a chin strap or even taping my mouth closed. Only if that didn't work then move on to full face or something else. I kind of assumed that I will be buying many, many masks out of pocket over the next few years.

I will have my doctor use the language you suggest. Thanks and thanks to all. It seems that getting the initial prescription right is crucial to minimizing hassles afterward.

Language is only a problem if/when using a DME/Insurance - JMMO (Just My Meaningless Opinion)

and if/when using a DME they WILL argue anything (even) a make/model specific script to the point of saying a machine that provides ONLY hours of use but has a smart card meets the data requirement as it does provide data.

brain_cloud wrote:First is that the temptation will be great to take what is offered since the prospect of further wait is very unpleasant.

A spare mask is always a good idea esp. when starting out.

"Life is a Learning Experience".

Definitely get a "generic" prescription that doesn't tie you into a specific machine. A good example would be "Autocpap auto titrate, with heated humidifier, and software Duration: lifetime" That would enable you to make choices in the future.

Call your insurance company and ask what local DME CPAP providers they are contracted with. Hopefully you will have the option of more than one as that gives you more bargaining/negotiating room. Then ask your sleep doctor for the equipment order (prescription) as you want to shop your local DME provider options to see who has the most lenient mask exchange policy and an RRT that you like and feel comfortable working with. Letting your "optional" local DME providers KNOW that they are just one of your options generally makes them a little more amienable to providing what you want (w/in reason, of course).

In line with what Slinky said, it doesn't hurt to "name-drop" the DME's fiercest competitor at the first sign of resistance.

"Well, so-and-so didn't indicate that would be a problem."

(They didn't "indicate" anything...cause you didn't talk to them--yet! So, technically, it's not a lie...)

LinkC wrote:In line with what Slinky said, it doesn't hurt to "name-drop" the DME's fiercest competitor at the first sign of resistance.

"Well, so-and-so didn't indicate that would be a problem."

(They didn't "indicate" anything...cause you didn't talk to them--yet! So, technically, it's not a lie...)

After I had some trouble with my DME, I visited another which was far, far worse. When I went back to my DME I happened to mention that I'd visited a second DME and that I didn't particularly like them. Still, my existing DME has been much better!!