Diagnosed, Prescribed, Confused

Hi, I'm new joining but have been reading here for a couple of weeks.
I've read enough that I'm now totally confused.

lol--for instance, I thought that "Avatar" was a mask that folks here were crazy about. I just figured out that an avatar is a photo. Oops.

Here's where I am in the process:

Sleep Study (Split): "Recommendations: 10 cm of nasal CPAP using medium to small profile lite mask"

I'm having to be quite pro-active in dealing with my insurance company and the DME. The default DME is through the same hospital that ran the sleep study. However, I have the option of using another DME, also through my insurance company. Right now, the insurance company is waiting on a petty form from the sleep study folks.

So--here's where I'm confused. Everything I'm reading here seems to point me to the Respironics REMstar Auto CPAP with REMstar Heated Humidifier"

My prescription says only, "CPAP", so I'm not sure I'm going to qualify for a humidifier.

I'm pretty sure my insurance is NOT going to spring for a "high-end CPAP" based on conversations I've had with them and with the two DME's the ins company uses.

I can fight those battles, but what kind of "language" should I use to convince my doctor and insurer that the "auto" is superior. (My doctor is very conservative--he required me to use nocturnal oxygen for two months before he'd prescribe a sleep study. He doesn't like CPAPs because his patients won't wear the masks because of discomfort. I know I need to challenge this thinking, but I'm not sure how to.)

And, what is a "medium to small profile lite mask"?

Thanks!!
Allen

And, what is a "medium to small profile lite mask"?

It's a cheap mask that probably will make a sore on the bridge of your nose. But, don't let that discouarge you...I could be wrong about what it will do to your nose - might suit you beautifully.

I doubt you'll get anywhere at all with your doctor or your DME about getting an autopap machine instead of a straight cpap machine. They've already made up their minds. I don't think there's anything you could say that will convince them otherwise. But don't let that discourage you, either. Many people get perfectly good treatment from straight cpap. The pressure of 10 you've been prescribed is not unduly high, so you'll probably be fine with straight cpap.

The insurance companies and the DME's usually go for cheapest possible in everything.

If you want to make treatment choices for yourself, you just about have to do it out of pocket. Sometimes you'll find that to be cheaper in the long run (depending on your particular insurance plan) by the time you figure in deductible and co-pays. It's certainly easier on the blood pressure to just choose what you want and buy online instead of relying on the doctor or DME to tell you what you can or can't have.

You might check with billmyinsurance.com (a division of cpap.com) to see if that would work.

If you do let them give you the Profile Lite mask, and if it does hurt your face or leak, INSIST on another mask. Don't let them tell you to keep trying or that you'll "get used to it." Ask to try some of the nasal pillows interfaces like the Breeze and Swift. Or ask for the new "DreamFIT" (not the DreamSEAL) by Puritan Bennett. It's a traditional type nasal mask that several people (including me) have found seals comfortably. Make them let you try both the Shallow and the Standard cushions with the DreamFit.

Good luck!

allen wrote:I can fight those battles, but what kind of "language" should I use to convince my doctor and insurer that the "auto" is superior. (My doctor is very conservative--he required me to use nocturnal oxygen for two months before he'd prescribe a sleep study. He doesn't like CPAPs because his patients won't wear the masks because of discomfort.

Hi allen--don't blame you for being confused, it's a lot to digest. Congratulations on taking control of your own therapy!!

It's interesting to hear a doc say he doesn't like CPAPs. He's right about patients not being compliant, but for pete's sake, if you need it, you NEED it!! (Besides, the ones who gave up probably never saw cpaptalk.com.)

I wrote this once b4, but it bears repeating. You don't have to convince your doctor of anything. If it says CPAP on the prescription you can still order an APAP online. You can also forego using a DME. Click on this:

billmyinsurance.com

to see if your insurance will work with the cpap.com program.

It is ideal for your doc to write a prescription for your CPAP machine with no expiration date. If you are doing this through insurance, be sure your doc includes a heated humidifier in the prescription. (While the humidifier itself doesn't require a prescription, it helps push through the cost to your insurance company). It is not necessary for the doctor to specify CPAP or APAP on the prescription. If you are only going to be ordering APAP machines, a pressure setting is not required on the prescription. It will come to you at 4-20. HOWEVER, the prescription must state the pressure level if you order a straight CPAP machine.

If you're doing this through your insurance (many don't; either they don't have insurance or they find it too big a hassle and not worth it because of the deductible), the billing code for the machine is the same regardless of APAP or CPAP (E0601 NU) and the billing code for the heated humidifier is E0562 NU.

Following is my argument for an auto machine (and it's really all about having the software to manage your therapy):

If you have an auto machine and use it in the auto mode, it can be set for a pressure range. If you use it for the full range, as it comes from the manufacturer, it can go anywhere from 4-20cm. If you choose to narrow the range (which seems to give better results based on what users have been reporting), you can set it to whatever gives you the best treatment. For example, if you were titrated at 10cm then maybe you'd want to try a range of 8-12. The auto machine will then adjust the pressure required as you are sleeping based upon your breathing patterns. It may use a pressure of 8 for just a few minutes, then maybe will go to 10 for 3 hours, then may go to 9 for 30 minutes, then may go to 11.... etc. Provided you have the software, you would examine your data on a nightly basis, experiment with a different set of ranges, and quickly discern the pressure range that results in the least apnea events.

One of the great things about the auto (APAP) is you aren't receiving more pressure than you need (as you may be with straight CPAP). When you think about it, your titrated pressure was based on a few hours in a weird (to say the least) sleep environment. Maybe you will discover through using the auto and evaluating your data, you consistently use 7 and never go above 9. That's the beauty of it! You use only what is needed and its all done for you while you sleep!

If you're buying the software so you can conduct self-titration experiments with your new APAP, you will quickly learn the most appropriate range for the most effective treatment. There are some users who conduct these experiments and discover they receive the best treatment from straight CPAP set pressure. Since this is a possibility, some have queried, "Then why bother getting an APAP in the first place?" The answer is that you can revisit your decision as time passes and things change: i.e. weight gain/loss, different mask, change in altitude, etc. Maybe once every couple months the straight CPAP user will reset to auto mode to check to see if they do better at a different pressure.

Some say, "If the treatment is better at a very narrow range, then why bother getting an APAP in the first place?" The answer is that even within a narrow range, you are still getting only the pressure you NEED. If my range is set for 10-14 and I spend more of my night in the 10-12 range but occasionally go up to 13 or 14, I have never received more pressure than I required. This would not be true at a single set pressure, as there are times when it may be more than necessary, and times it may not be enough. So even a tight range is helpful.

Perhaps the best feature is the software that goes with it so you can see how you're doing. You no longer have to wonder if you're getting the best treatment possible, you no longer have to schedule a full PSG to check your results, you no longer have to make a drs. appt. every time you want to change your pressure, and you no longer have to pay exorbitant prices by making every move through a DME.

You will also no longer have to go back to your doctor for a new prescription if you'd like to try a different machine because cpap.com will keep the original (non-expiring) one on file.

The Respironics REMstar Auto with C-Flex and the Puritan Bennett GoodKnight 420E are the 2 autos I've used. I found both to give excellent treatment.

I would just like to know how all of you that have a remstarAuto or any apap device got the device....??? If the DME's don't want to give you one..like the myself....????

YOU DO NOT HAVE TO GET THE DEVICE FROM A DME. YOU CAN BUY WHATEVER MACHINE YOU WANT FROM WHOMEVER YOU CHOOSE.

I WOULD NEVER, EVER, EVER WASTE A SECOND OF MY TIME OR A PENNY OF MY MONEY GOING THROUGH ANY DME. EVER!!!

I WILL ONLY BUY DIRECT ONLINE. ALL YOU NEED IS THE PRESCRIPTION AND IT DOESN'T HAVE TO SAY APAP.

allen wrote:<Snip>

My prescription says only, "CPAP", so I'm not sure I'm going to qualify for a humidifier.

<snip> He doesn't like CPAPs because his patients won't wear the masks because of discomfort. I know I need to challenge this thinking, but I'm not sure how to.)

First of all Welcome to the Club! Membership has it's privledges- Like breathing through the night

I snipped your post down to two points because I think the second is the answer to the first If your Dr. is leary of compliance a suggestion from you to make sure a humidifier is part of your initial setup to help you with comfort and use then he may be amendable to making sure that it is noted in your prescription.
Someone who is better at keeping track of these things than I am can probably point you to a study that shows an increase in compliance with the use of a humidifier

Also if you get the insurance company to pay for the cpap, you can always
buy the Humidifier on line yourself, you don't need a RX for just the humidifier.

Humidifiers in themselves aren't all that expensive....about $200 tops from this site. But I bet you can just call your doctor's office and ask for another prescription that reads "heated humidifier" with no problem. I can't imagine he would have an objection to that.

Sounds like your doc is pretty old school and won't be helping you with your DME giving you an auto-pap. And probably he would have a stroke at the thought of you taking control of your own pressures, etc.

So you need to just consider can you afford to just outright buy the stuff from this site (pretty darn cheap) or if your finances dictate that you need to take what insurance gives you.

OH--this is important--make sure you KEEP A COPY OF YOUR PRESCRIPTION IN YOUR FILES. That is your ticket to do this treatment however YOU want to do it.

For what it is worth, I am on straight C-pap with a machine handed out by the DME...a Devilbiss which no one else on this site has by the way...and I'm doing just fine. At some point, I'm going to buy an Auto-pap with software with my own money. But right now, I'm plugging along with a good basic machine and doing well. It is not the end of the world. But I'd fight to find a good mask--that is the most important thing right off the bat.

Oh, here's an idea if you want to do it in steps. I think all the Remstar machines use the same humidifier. So do the other brands (but research that, don't believe this brain of mine!). So you could get, for example, a basic Remstar with heated humidifier from the insurance company...then later on when finances allow, buy the fancier Auto-pap model and use the same humidifier with it. That would save a few bucks.

Jan in Colo.

neversleeps wrote: I WOULD NEVER, EVER, EVER WASTE A SECOND OF MY TIME OR A PENNY OF MY MONEY GOING THROUGH ANY DME. EVER!!!

I'm just curious, did you arrive at this conclusion through prior experience buying through a DME ??

Yes. In the door and right back out again. I had researched my options through this (and other) venues and wanted to see for myself if the DME business was truly the racket it was purported to be.

Spoke to DME about machine I wanted, vs. the machine they wanted to give to me. True to form, they wanted to sell me the cheapest, most outdated cpap they had so they could realize maximum profit.

Compared price of machine purchased through DME with price of identical machine purchased through cpap.com and was stunned by the difference.

Compared price of masks purchased through DME with price of identical masks purchased through cpap.com and was stunned by the difference.

Spoke with DME about autos and software and was stunned by their ignorance.

Spoke with DME about pressure adjustments and was stunned by their insistence that only THEY, with their skilled medical training, could handle such an extraordinarily complicated procedure.

I left there, not only unimpressed, but angry. What an incredible waste of time and money. It's really sad that so many people don't know they have a choice of what machine to get and where to buy it.

Thanks for the many and helpful responses. Y'all rock!

Rested Gal,

Will the DreamFit work with a Remstar CPAP, or only with a GoodKnight?

All,

I think I might be an occasional mouth breather, so should I be looking for a full face mask? I don't relish the idea of duct taping my mouth shut at night.

It seems that lots of folks here are using the Mirage Activa. Thoughts on it?

Thanks,
Allen (Who is READY to get some sleep, and tired of the extensive delays in getting what I need!!)

I could have written about the same thing that Neversleeps wrote.
At one DME site, I actually pulled up CPAP.COM on her computer and showed her the prices.....she was dumb-struck. She told me that those prices were cheaper than she she could get them for. The DME's around here were at least very friendly to me (and seemed fairly knowledgeable).....but then again, they were still trying to sell me something. Don't know how it would have been AFTER the purchases.

Den

Will the DreamFit work with a Remstar CPAP, or only with a GoodKnight?

Yes, Allen, the DreamFit should work any machine - any brand, any model. The machines would regard it as they would any nasal mask (covers the nose.)