suggestions?

[susanyp]

Sigh... here I am, not ready - at all! - for yet another reminder that I'm getting older. I was just diagnosed w/ mild/moderate apnea and am waiting for the supply company's call to fit me for my first cpap equip. Suggestions? I AM NOT looking forward to this. I think dread might be the right word.

[Alshain]

Sigh... here I am, not ready - at all! - for yet another reminder that I'm getting older. I was just diagnosed w/ mild/moderate apnea and am waiting for the supply company's call to fit me for my first cpap equip. Suggestions? I AM NOT looking forward to this. I think dread might be the right word.

My first suggestion is stop believing that apnea is an indication of age. Children have it too. I'm only 31, I don't think I'm that old. Your age has nothing to do with it.

Next suggestion would be to try your hardest to get a data recording machine like an S9 Elite/AutoSet or a PR System One Pro/Auto.

AVOID machines with the name "Escape", "Plus", and "AutoIQ".
EDIT: RemStar Pro with CFLEX Plus is ok, not RemStar Plus, they don't make that incredibly confusing at all.

[yankeenoles]

If your DME is going to give you a RESMED machine be sure they give you the S9 Elite. I made the mistake of not doing my research on CPAP Machines and ended up with the S9 Escape which only records usage data. The S9 Elite will record all data and you will be able to gage if your therapy is working. Since my machine only records usage data, I have had to go for multiple sleep studies and get oximetry devices to find out why my therapy was not working.

[Pugsy]

Welcome to the forum. Lots of great people here to offer support.
I suggest that you start your education with this bit of reading here. Hopefully you will be better prepared to deal with any hurdles that might be put up.
Please educate yourself about full data machines (those that give more than hours of use). It could potentially make a crucial difference down the road. If it means waiting a few days to get a better machine..then wait.
http://maskarrayed.wordpress.com/what-y ... me-part-i/

Know your insurance coverage. Do the math on out of pocket costs. It is nearing September..does your insurance require rent to own for X number of months? January is just round the corner and may involve a new deductible which could potentially significantly impact out of pocket expenses.

[apneawho]

Susan, above all please be positive. I have found it is so helpful in having success with CPAP. There are obstacles to overcome along the way and you will need to stay positive to work through them. Apnea is not an age related disease. There are thin people who have it, heavier people, young and old people. One thing you will find here are lots of supportive and kind people.
Advocate for yourself to get a fully data capable machine. I have the ResMed S9 Elite and I love it. DME or supply co as you call it may try to bring you a machine that will not tell you anything about how you are doing. Search topics on this forum to find the list of data capable machines. There was a very recent thread I think today or yesterday, where those machines are listed by name. Do not accept anything else. Good luck and stay connected to this group.
I would rather have sleep apnea than another stroke. Yes, I had a very mild stroke in June of last year. I finally put the pieces of my clinical picture together in May of this year and begged for a sleep study. My doctors had no clue. Be glad you know.

[cowlypso]

30 here... I sure hope that needing CPAP isn't an indication of old age!

Honestly, the diagnosis blindsided me (and my doctor). But now, just 3 months later, you couldn't pay me to give up my machine! I feel so much better with it. I have only skipped one night in 3 months, because of a power outage, and the next day was absolutely awful. I absolutely love my CPAP machine!

[robysue]

Sigh... here I am, not ready - at all! - for yet another reminder that I'm getting older. I was just diagnosed w/ mild/moderate apnea and am waiting for the supply company's call to fit me for my first cpap equip. Suggestions? I AM NOT looking forward to this. I think dread might be the right word. (emphasis added)

All too often the decision about what machine and sometimes what mask is made by a DME that is contacted by the doctor's office or the sleep lab that the patient has never heard of before the phone message saying, "Please call us to set up a time for delivering your new CPAP equipment."

And that's a sure fine way to get stuck with a brick and a mask that is not particularly well suited to your face.

But---you've found us BEFORE you've received the call from an unknown DME saying "We've got your CPAP all set up. When can we deliver it?"

So you have the chance to take charge of the situation. It is your body and your nose that will be sleeping with the machine every night for the next 5 years or so. (Most insurance companies will replace the blower unit about every five years.) And you want to be comfortable and knowledgeable about your sleep and health during the next five years. And instead of reacting passively as if cpap is something that will be done to you, accept that YOU are still the one in charge: If the DME that calls you does not satisfy you in terms of equipment provided and choice of masks, you are under no obligation to use them. Find another DME that you do want to work with that will provide you with the equipment you want and a wide choice of masks with a generous mask exchange program.

Here's what you need to do right now:

First, you need to also do some serious legwork in both fully understanding your diagnosis and in locating a DME. Please be aware that ALL CPAP and APAP machines are covered under the same insurance code. So even if all your prescription reads is "CPAP @ n cm", you CAN (and SHOULD) be able to get set up with a machine that records full efficacy data. If you do your homework, you CAN (and SHOULD) be able to get set up with an AUTO machine. The advantage of that is that an AUTO is two machines in one: It can be run in straight CPAP mode OR it can be run in AUTO mode. So if there's any problem with your initial fixed CPAP pressure, your doctor can ask your DME to simply change the settings on your machine and do a week or two of Auto titration to fine tune your CPAP settings. Plus some folks simply do better on APAP than CPAP. And read and re-read JanKnitz's What You Need to Know Before You Meet Your DME

What to do next? Start by asking for the reports from both sleep studies. Make sure you get the full reports---both the dictated interpretation AND the full summary data with the graphs. And start learning what that report means. Ask your questions here.

And instead of waiting for the dreaded call from the unknown DME, what should you do? It is imperative that you call your insurance company NOW and find out about your coverage. You want to find out exactly how they cover durable medical equipment. The copays for equipment like CPAPs may be very different from the copays you are used to for the occasional prescription drugs. You will also want to ask for a list of "in-network" durable medical equipment providers (DMEs) that the insurance company works with. The reason why is that YOU want to be the one contacting the DMEs and interviewing them to make them earn your business rather than simply accepting a machine from a DME that you've never heard of and then---after the fact---finding out that the machine they "gave" you is not the one you really want or need. And if your coverage is only so-so (large annual deductible not yet met and/or a steep copay for durable medical equipment), you might also want to weigh the costs of buying the equipment outright without any reimbursement from the insurance company. That lets you completely control the choice of the DME.

And you also need to start researching CPAP machines. While they all provide the pressurized air you need to keep your throat open, they are NOT all the same in terms of important features that improve your comfort and improve your odds of fully adjusting to therapy and thus benefiting from CPAP for a long time to come.

My advice about what kind of a machine to get? Get yourself a CPAP that records full efficacy data to start with. And as for your travel requirements? Most CPAPs---including the full efficacy data ones---are travel sized and can be brought aboard airplanes without counting against your "carry on bag" limit. There's lots of specific info on size and weight of the various machines. And most will come with a carrying case for travel. The case is durable enough for carry on luggage, but never put your cpap in checked baggage. And be as demanding as you need to be in order to find a mask that works for you. More about this is included in the my next post.

Once you know what KIND of machine you want, then start making phone calls to the DMEs that are in-network for your insurance company, if you are using insurance to help pay for the equipment. Interview each DME and make them earn your business: Start the conversation by saying something like: I've been recently diagnosed with OSA and I am looking for a DME. If I were to use you for my DME, would you provide me with a <your choice of CPAP machines>? If the answer is no, politely hang up and keep on making phone calls. When you locate a DME that will give you your choice of machine, then start asking them about their mask return policy: How many times can I swap a mask that's not working out for me while I'm getting used to the machine? What kind of restrictions do you have on returning a mask that is not working? You want to find a DME that has a reasonably generous mask return policy since some new CPAPers literally go through 5--10 masks (or more) before finding one that is right for their nose.

[robysue]

And here's some info to start your research about the different models of CPAP that are out there.

Best of luck.

Important Information About the Four Most Commonly Used Brands of CPAP/APAP Machines

NOTE: The information about the DeVilbiss IntelliPAPs is VERY INCOMPLETE since I have not had a chance to fully edit this since adding them to the lists in the first part of the post. I have not yet had a chance to write anything about their on-board data, their software (including the SmartCode), or their data card (and the need for an add-on "module". If there are any DeVilbiss users out there who can add this information to this thread, please write a response so I can add it to this post.

For the four most common brands of xPAP equipment here's what you need to know about their most RECENT lines of machines:

• Full Efficacy Data Machines And Notes About Software For Tracking Therapy:
  • Resmed: The S9 Elite CPAP with EPR and the S9 AutoSet CPAP (ResScan is not sold to patients, but can be easily downloaded for free; SleepyHead-0.8, which is underdevelopment can also be used to look at the data.)
  • Resprionics: The System One REMstar Pro CPAP with C-Flex Plus and the System One REMstar Auto CPAP with A-Flex (EncoreViewer is sold to patients for about $100, EncorePro is not sold to patients, but can be had for those willing to look for it and deal with installing/running it, and SleepyHead-0.8 can also be used.)
  • Fisher & Paykel: The Icon Premo CPAP and the Icon Auto CPAP (Nobody on this board has found a source for InfoSmart, the software needed to look at the data on a computer.)
  • DeVilbiss: The IntelliPAP Standard Plus with SmartFlex and the IntelliPAP AutoAdjust with SmartFlex (There's a web-based interface for getting some of the data from the machine as I understand it. Can a user of the IntelliPAP PM with the detailes?)

• Only Compliance Data Machines:
  • Resmed: The S9 Escape CPAP with EPR and the S9 Auto Escape CPAP
  • Resprionics: The System One REMstar Plus CPAP with C-Flex and the System One REMstar DS150 CPAP
  • Fisher & Paykel: The Icon Novo
  • DeVilbiss: The IntelliPAP Standard

Important Notes:

1) It is best to hold out for a full efficacy data machine right from the start. As soon as you accept a brick that records only compliance data, you will have a mess on your hands if you later try to upgrade it to a full efficacy data machine. So if a DME contacts you (because the sleep doctor's office sent the script) and makes an appointment to set up the equipment and then shows up with a compliance-only brick of a CPAP, REFUSE delivery of the machine. Yes, they will tell you, "This is exactly what the doctor ordered." But YOU are paying for the machine (through your co-pay and your insurance company's money) and you are under NO obligation to "accept" a machine that you believe will be detrimental to your health in the long run. Politely inform them that you will only accept <fill in list of machines that you find acceptable> and that if they are unwilling or unable to provide you with such a machine, you will take your business to a different DME.

2) The naming of two of the Resprionics System One straight CPAPs is particularly confusing:

• The System One REMstar Pro CPAP with C-Flex Plus IS a full data machine, but
• The System One REMstar Plus CPAP with C-Flex IS NOT a full data machine.

3) Technically the Resmed Auto Escape is not quite a "only compliance data" machine because it does give a minimum amount of data beyond the number of hours used. But not enough additional data for it to be considered a full data machine. If the choice is between the S9 Elite and the S9 Auto Escape, you're better off with the Elite in my humble opinion.

4) On-board Data: Each brand of machine has its own select set of data can be viewed directly off the machine's LCD. The Resmed S9 AutoSet and Elite have by far the best on-board LCD data of any of these machines since their LCDs will let you see all of the following: AHI, AI, CAI (from which you can easily compute OAI and HI); 95% Unintentional Leak rate; 95% Pressure Setting (AutoSet only); and hours used (of course). You can also easily change the reporting period from 1 day to 1 week to 1 month to 3 months and more. The on-board data for the Resprionics System One machines is limited to 7 and 30 averages for AHI (not broken down by type) and 7 and 30 averages for "Percentage time spent in Large Leak." That Large Leak data is useless in my humble opinion----in part because Resprionics leaves the definition of Large Leak undefined and in part because a Large Leak has to last an awfully long time to show up in a 7-day average (let alone a 30-day average). I've used both an S9 AutoSet and a System One BiPAP Auto so I know those machines really well and speak from direct experience. I am not directly experienced with the F&P Icons, but as near as I can tell (based on information in other apnea forums that I read), the on-board data for the Icon has the following data: 1, 7, and 30 day figures for AHI (but not broken down into type), leak rate, and the 90% pressure level and SenseAwake stats for the Icon Auto.

5) Software:The Resmed S9 needs ResScan, which can be downloaded for free once you know where to find it. The PR System One needs Encore Viewer (which can be purchased for $100 from a variety of on-line cpap supply stores) or Encore Pro (which is sold to DMEs and doctor's offices, but not patients). SleepyHead-0.8 is another alternative for S9 and System One users: SleepyHead is under development by our very own jedimark. It's still considered alpha-ware by the author, but it's remarkably good alpha-ware. The F&P Icon uses InfoSmart, which appears to be aimed at clinics and sleep doctor offices. No-one on this board has been able to get their hands on a copy of InfoSmart---not from the DMEs, not from the docs, and not from the torrent-sites. So if you want to look at all the data recorded by your machine on your computer instead of begging the DME or sleep doc's office to download the data for you, cross the F&P Icon off your list of acceptable machines. The DeVilbiss uses some kind of web-based "code" that you enter into an appropriate site every morning to look at your data---if I understand correctly from what I've read about these machines. Please if you're a DeVilbiss user who regularly uses this web-based code system to examine your data, PM me with the details. And provide a screen shot if you could?

6) Data cards: The S9 and the System One both use standard SD cards for the data. The newer SDHC cards will NOT work! The Icon uses a SmartStick. But since the software for the Icon is nowhere to be found, it doesn't much matter if you have a card reader than can handle a SmartStick.


EDITED TO REFLECT CHANGES SUGGESTED BY cflame1 CONCERNING THE FACT THAT ICON USERS CAN'T FIND THE SOFTWARE ANYWHERE

[ameriken]

Sigh... here I am, not ready - at all! - for yet another reminder that I'm getting older. I was just diagnosed w/ mild/moderate apnea and am waiting for the supply company's call to fit me for my first cpap equip. Suggestions? I AM NOT looking forward to this. I think dread might be the right word.

Suggestion? Look forward to this. You're going to start breathing again, sleeping again. The strain is taken off your heart and you are reducing your risk for heart attack or stroke that can be apnea related.

Also, this is not cancer or diabetes and for that we have a lot to be thankful for. I hope you can look at this as 'half full' rather than 'half empty'. I look forward to putting the mask on because I know it is helping me extend my life rather than shorten it. I thank God every day that I have not been diagnosed with cancer, kidney disease, diabetes, alzheimers, or something like that. This is something I can easily live with.

Good luck!

[cflame1]

RobySue,
I wouldn't advocate for the ICON machines... folks have posted that they can't get the software.

[robysue]

RobySue,
I wouldn't advocate for the ICON machines... folks have posted that they can't get the software.

Point noted. I'll edit this post so that the next time I do a copy and paste it will be correct.

The Icon and DeVilbiss machines are basically unknown to me: I've never used them and don't know much about what the data they show on-board or on a computer. So I'm am looking for feedback on this post. Eventually I want to have it polished enough to add to my blog.

Let me know what you think of the edited version of my post cflame1. The feedback is valued.

[susanyp]

Oh my gosh! I had no idea there was any technical info I'd be responsible for! As I was reading all the posts it was like reading Greek. I had already decided that I wanted a nose mask rather than a nose and mouth, but I don't know what "pillow" means and I've read about "gel". Thanks so much for the advice re: machines. It seems that the S9Elite works for several of you. I don't know anything about the DME company. All I know is that the dr. wrote out a referral and from there I don't know what happens. But - I'll find out!!! My husband has talked to some folks he works with and ins. pays for everything, but I'll certainly verify that as well. I promise - I will not be pushed into anything that I'm not comfortable with. You have all shared your experiences with me and I'm truly grateful. I'll make sure I ask about their return policies re: masks and the other things that were mentioned (I'll have to re-read them all to make sure I get everything!)

Thank you for the encouragement from all of you. I wish I could meet you all to listen and ask questions. I'm concerned about a retreat I'll be going on the end of Sept. I will be rooming with several others, and I really don't want to take the machine and head-gear with me. It's only one night....

And here's another concern: when I had my sleep study I was absolutely exhausted the next am. I've never been so tired, even after only 3 hours sleep. Then we read the report and saw that my REM lack of saturation (can't remember the term) was 22.8. I asked if that could have been an anomaly but the dr. said "no" based upon the numbers.

Well, a new chapter and a new challenge. Thank you all for your advice

[apneawho]

[quote]I'm concerned about a retreat I'll be going on the end of Sept. I will be rooming with several others, and I really don't want to take the machine and head-gear with me. It's only one night....


Take your gear on the retreat. Your friends will understand. I am not self conscious anymore about wearing the gear. One good piece of advice that I received was to not miss a night. You may not be able to wear your cpap all night while you are working thru some things, but the best predictor of gaining control of compliance is to not skip a night.

[MidnightOwl]

With luck the dread will turn to mild boredom very quickly. It did for me though I was shocked at the news that I had apnea and that I'd need to use cpap. Now I totally forget about it except when putting it on or taking it off. (Yes. I can forget about it while it's on!)

Relax about the retreat. You don't need to make the decision yet.

Nasal masks go over your nose. Nasal pillows go in it - sort of. Nasal masks usually have a plastic piece that rests on your forehead that helps the mask stay in place. Nasal pillows don't (usually?). This is important if you wear glasses at night - say to watch TV as you fall asleep. Different people prefer different masks.

There are some pictures here: https://www.cpap.com/cpap-masks.php Cpap.com is an online vendor who also sponsors this forum. They do not restrict discussions of other companies however.

There's a lot you can learn about apnea and cpaps if you want to but most of it's optional. In my opinion you do need to know the following now.

How much you'll pay. Insurance policies vary widely in what they cover (even within the same company - or from year to year). Most companies negotiate a price that is much much lower than the so called regular price at a DME and you pay a percentage of that as your copay. However some don't and when that happens you can end up spending more getting a cpap machine through your insurance than buying it online for cash. You need to know which you are before you agree to pay for anything.

Data capable machines. To your DME (supply company) this means anything that will report back to them the number of hours per night you were connected to the machine. They need this to get paid and that's all they care about. To us that means a machine that tracks information such as leaks and the number of apneas you have. You want one of those. You can completely ignore that data for now but you need to have it available to you (and/or your doctor) if you later have problems. It shouldn't cost you more if you get it now. It's up to you whether you want to get into the details of the various machines - there's a good start on them above - or just memorize a list of what's ok and what's not.

Ask your DME about it's mask exchange policy. Most will exchange masks free for you with in the first 30 days. If yours won't find another. Different masks work better on different shaped faces. You may need to try a few to find something that's comfortable enough for you to sleep with. (or not- you could get lucky with the first one as I did).

Finally take a deep breath and relax. It's not going to be that bad.

Midnightowl

[ThirdOutOfFive]

Go to the sponsor site -- cpap.com. Look at the pics and read stuff in the learning center. Great resource.

Also, post every question. We have some awsome experts on here, and some folks like me that have just started. You will get all (or too much) of the info you need, and all of the support,too.

Welcome, and good luck.