Some answers, more questions!

Thank goodness for this board!! I've been lurking for a long time and I still don't have a machine at home but at least I've been able to go into this process armed with some knowledge ahead of time.

Well, I finally had the followup with the sleep doctor after my split-night study and my AHI was 23 before treatment and zero afterwards with pressure set at 8.

I still have not called the DME but I did ask the doc some questions. I asked him about APAP and he said they had done a lot of trials with APAP and found it not to be as effective as straight CPAP. Maybe my pressure is too low? My concern is that I've got a LOT of weight to lose and I'm ready to start losing. So once I start losing weight, does this mean I'm going to have to keep going back for sleep studies (i've already had 2) to re-do the titration because I lost weight??

I need to lose weight for so many reasons other than OSA. I've got over 100 pounds to lose, which sucks, but I'll take it one day at a time. I really have trouble sleeping at the clinic, so I hope this isn't going to be a deal where I have to keep going back in over and over again. Can the doc adjust the pressure downward as I lose weight, without going back for multiple studies? (anyone in Vermont can probably guess who the doctor is, because he seems to be the only game in town)

Also, the doctor recommended that the first time through I go with a local DME. He said online is great if you know exactly what you need, but for the first shot I should hook up with a place that has a local office. How is Lincare?! Are these people okay? He wrote on the Rx for me to get CPAP with C-Flex, mask, and hose...and to try a Swift Mirage mask. If I go with Lincare, what happens? Do I just drop in and tell them I need a CPAP and I want to try this stuff on (like buying shoes)? Someone was telling me they come out to your home? That's new to me; do they bring all of the "demo" models or what?

Whew!! Hopefully I'm on the right track!!

I don't have an autopap, but from what I've heard on this board, that is still what you should try to get. Especially since it works as straight CPAP as well....and you get the added benefit of the flexibility. Plus you can buy the software for it and monitor yourself. It costs more than a regular CPAP but when you think of the benefits, it's really not THAT much more and lasts for many, many years...

BUT, being an impatient sort and needing to have a hands-on sort of decision-making process...I went to a local DME. They rented a Devilbiss machine to me, offered nothing else and a somewhat adequate mask. Not many options. But I wasn't pushy either. And I should have been.

The original mask I got was a comfort-lite. I spend a lot of time adjusting it all night. The SWIFT is very nice, MUCH better than the comfort-lite..I bought that one with my own money. I'm getting an Activa this month...one mask a month until I get a couple of excellent choices for me. That's my plan of action, lol. (Insurance will provide one new mask every six months--I think that is common procedure)

The Devilbiss straight CPAP machine actually works just fine, is very quiet and I have no complaints. EXCEPT I would really like to have the software-type of machine. So now that I'm a little more awake, I'm going to start manuevering my way towards one of those for my CPAP purchase. I'm betting that I will prefer the CPAP mode as opposed to the auto mode, and I have no trouble at all exhaling without C-flex at my current setting of 9. So technincally speaking, my current machine is fine. But when I purchase a machine I want to be able to monitor my condition.

I've only used an Internal Medicine doc who really isn't all that informed about sleep apnea thus far. I think I'm going to make an appointment with a sleep doc....if for no other reason than to get my periodic limb movement disorder under control. Maybe I can get him to prescribe the upgraded machine so the insurance company won't argue so much!

So that's been my experience....hope that helps and good luck!

Jan in Colo.

Oh, I just wrote the longest message in history and still didn't tell you this...my DME had me come to their office. They did not come to my home.


Jan in Colo.

This example is from Indiana. The sleep lab sent my results to the DME (Sleep Solutions in Jeffersonville). They called and made an appointment with me and had a machine and two masks for me to try. I just picked up another yesterday to try. When I decide what I want then they will order me a new one. I think that they are just a wonderful company to deal with and work with my insurance so I don't need to do a thing. I have had nothing but good experiences with everyone involved with this and (imagine James Brown type voice) "I FEEL GOOD!".
good luck to you!

peg

Sleeper wrote:I still have not called the DME but I did ask the doc some questions. I asked him about APAP and he said they had done a lot of trials with APAP and found it not to be as effective as straight CPAP.

Ask your doc to cite the trials finding APAP not to be as effective as CPAP. Tell him you'd like to read them. Is your doc aware that APAPs can be set to operate in either auto or straight CPAP mode?

So once I start losing weight, does this mean I'm going to have to keep going back for sleep studies (i've already had 2) to re-do the titration because I lost weight??

If you don't have an auto, yes, you'll need to be re-titrated. ( More money for your doc.)

Can the doc adjust the pressure downward as I lose weight, without going back for multiple studies?

Yes, he can. But will he? You'll have to ask him. Easier yet, do it yourself.

Also, the doctor recommended that the first time through I go with a local DME. He said online is great if you know exactly what you need, but for the first shot I should hook up with a place that has a local office.

Doesn't he know exactly what you need? You will save time and money if you buy online. If you buy from cpap.com, for instance, you will receive the machine AND the manuals. If you get your machine through a DME, they will withhold the manual containing the instructions on how to change the pressure. (No, I'm not kidding. They will actually open up the box and remove it so you will never see it.) Also, you can buy software online that is used for your (auto) machine so you can check your nightly data. You will be able to see if a pressure change is needed based on the results obtained using the software. You will not need to make an appointment and go to the DME to find out how your treatment is working. You will not need to go to the DME to get your pressure adjusted. You will save time and money.

How is Lincare?! Are these people okay? He wrote on the Rx for me to get CPAP with C-Flex, mask, and hose...and to try a Swift Mirage mask. If I go with Lincare, what happens? Do I just drop in and tell them I need a CPAP and I want to try this stuff on (like buying shoes)? Someone was telling me they come out to your home? That's new to me; do they bring all of the "demo" models or what?

You can fax your prescription to cpap.com. Just out of curiosity, what EXACTLY is written on the prescription?

I am not familiar with Lincare so cannot answer your question.

I personally suggest you avoid using a DME. They are an unnecessary and expensive middle-man.

Whew!! Hopefully I'm on the right track!!

Yes, you are on the right track!!! You are asking great questions!!!!

Well, here's what my prescription says:

CPAP @ 8 cmP
with C-Flex, Head gear, mask, hose.
(try Swift mask)

I've never had one of these machines before, but I do I.T. for a living so I'm comfortable with the technology aspect. I like the idea of having the manuals, adjusting the settings, downloading the data, and generally having more control in the situation. I don't like the idea of having to go in for more studies or being strung along by the DME.

I admit I'm nervous about challenging the doctor on Auto vs. straight CPAP issue, but if I were to get, say, a Remstar Auto CFlex, I could easily just use it as a straight CPAP machine, right? And then the "auto" is there if I need it.

Thing is, too, the mask... isn't that something you need to go to the DME, try on... try different ones?

Thanks for all the help, I need it!!

Do you think you can get your doctor to add the words: with heated humidifier to your prescription? (Note: a prescription is not necessary for a heated humidifier, but it's easier to push it through for insurance coverage if it's on the prescription.) You'll be glad you did. If you don't want to ask him (or if he refuses), you can order it on your own because humidifiers (and hoses and masks and software) do NOT require a prescription.

I believe you can order a REMstar Auto w/C-Flex from cpap.com with the prescription you have. All you have to do is fax it in, so there will be no need to call the doctor to challenge him on his opinion of APAP vs. CPAP. You're the consumer and the decision is yours to make. (There is no difference in billing codes between APAP and CPAP for insurance purposes.) You could simply call cpap.com to verify this. Also, here is the link to their Secure Prescription (Rx) Upload:

Secure Prescription (Rx) Upload

Yes, it would be great to try on a bunch of different masks. I take it back.... I think you should go to the DME, bring your pillow, and be sure to lay down while trying them on. Once you've decided what you want, tell them you're going to think it over, go home, and order the mask(s) online. (Just for grins, ask them the cost of each of the masks you look at and when you get home look up the cost for the identical mask on cpap.com. Trust me, you will be absolutely astounded!!!)

Here are a couple links to threads I suggest you look at:

Auto CPAP question

and

I just don't get it...

My doc said he'd send my Rx to a DME. I told him no thanks, that my deductible was so high it would cost me more to go through a DME than to buy online.

So he asked what I wanted, wrote it out exactly that way (it helped that he considers the GoodKnight 420 series to be excellent) and I sent it to cpap.com. I'm happy to report that he didn't even blink when I said I wanted a 420E (I didn't bother to point out that it was an APAP, and if he didn't bother to check that's OK with me). And dealing with cpap.com was a great experience. I got everything I ordered the very next day!

Don't be worried about challenging your doctor for the prescription written the way you want it. They are just human beings. Maybe busy, irritated human beings, but just human.

And many of them don't know diddly squat about the actual equipment...that's the DME's job. So give them a little guidance....

Jan in Colo.

You don't really have to challenge you doc on the Auto theraputic aspect or lack of it.

Try the information, self monitoring aspect - autos can be set as straight CPAPs, but will give lots of details.
Remind the doctor of the way diabetics monitor their blood sugar.

There are, by the way, straight CPAPs that will give you all the data as well: I know of the Respironics Remstar Pro 2 (not the one without the 2) and the Puritan Bennett 420S.

Most of us on the forum have found self monitoring a great help in the therapy. Some have found Autos better than straights, others have found the oposite to be true. Tell the Dr. that neither he nor you know if you belong to the minority (in his experience) that don't do better with CPAP, and if he gives you an auto perscription for auto, you could try it both ways on the same machine. Why make a mistake, based of the law of averages, when you can avoid it by paying a bit more for an auto?

You could also add that not all people need mulitfocal glasses (and some can't stand them) but many couldn't function without them.

Good Luck!
O.

Sleeper, peg is one of the lucky ones who has found a "good" DME. The good ones who let you try things at home before locking in on what you can have are few and far between, though.

The gals who responded (oh, and the guy, too...heheh..WAFlowers!) are giving you great advice.

Autopap. Software. Heated humidifier. Mask of your choice. Purchase online. Very good advice.

It's YOUR health. It's YOU having to sleep each night with machine and mask. Not the doctor and not the DME. You.

The message board can help immensely in making this kind of intrinsically uncomfortable treatment as comfortable and effective as possible. You've come to the right place to get good advice about equipment and ways to make it work well for you.

Good luck and keep asking questions!

Oh boy oh boy!! I had no idea this was so complicated.

Well, let's see. I called my insurance co (BCBS) to find out what my deductible would be and it doesn't sound like I'll get hit with much more than 20% at this point. But of course 20% of $800 is a heck of lot less than 20% of $1800, so that's the thing.

As far as the DME goes, BCBS said they don't do much business with internet-based providors but that I would just need to make sure they are a "participating" providor. Uh... Not sure where that would leave me for cpap.com. I also need prior approval but since I've got the Rx that's just a formality.

I called Lincare and they seemed very anxious to get my name and get me in the door. Of course the respiratory tech would not be in till Monday (she could show me masks). She offered to make an appointment with her and I just said politely that I would call or stop by Monday.

What an adventure this is!

Sleeper, goto billmyinsurance.com and let them figure it out with BCBS. That site is the insurance paid wing of cpap.com, the hosts of this forum.

WAFlowers wrote:My doc said he'd send my Rx to a DME. I told him no thanks, that my deductible was so high it would cost me more to go through a DME than to buy online.

First of all, I'm new here, quick details - Sleep Study Monday night, my GP is trying to figure out why my BP just won't come down, beta blockers are close at hand he tells me. Asked him about needing to take a long nap when I get home. He asked "if it was easy for me to fall asleep", my wife blurts out "He came sleep any where, any time" (she was there as he was teaching me some techniques to help with her back, baby on board). Mr. Flowers is the one who directed me towards the list. Anyway, that's me.

As far as the topic at hand. As with everything is this world you have to take care of yourself. I'm pretty lucky, my GP, who is a DO, is a great guy, even reads current journals. For me, after reading the forms sent to me from the attending Dr. at the sleep clinic I am guessing I will have an interesting time, his letter to the patients mentioning that they will arrange for the rental of the equipment if OSA is confirmed. I'm thinking, thanks but no thanks. If it comes down to it I am pretty sure my GP will write the prescription for me.

I am also going to ask the Technician for a split study if OSA if reasonably confirmed throughout the first half of the night. I am tired of being tired, as far as the compliance thread, if I can get back the ability to concentrate like I did in University, and stop the snoring that can wake my wife, sign me up every day!

BTW, I will most definitely be getting a APAP and software, I will probably also get the Activa and Swift (IIRC) masks, even if I have to pay out of pocket for one of them. For me, I just want an accurate diagnoses as quick as possible, then get me the machine ASAP.

Anyway, sorry for the length, and thanks to everyone, so far this forum has been a good resource.

cheers,
Tom

Tom, great to hear from you on this forum! I hope the sleep study goes well. Let us all know how it goes.

To everyone else: Tom is probably my best friend, except for my wife, although we are seperated by more miles than I like to think about. He's more like a brother -- the great kind -- than a friend. He is one of the people who I influenced to get a sleep study.