Excited, anxious and apprehensive newbie

[Bluebonnet_Gal]

I was recently diagnosed with OSA. I'm fairly certain I've been suffering with OSA for years, but never took the step of having a sleep study to confirm it (until a few weeks ago). I've been prescribed C-PAP and hope to get started on it next week after my DME gets insurance approval.

I had a split night study and after just a few hours on C-PAP, I woke up very refreshed. I was initially excited and looked forward to feeling better all the time. I'm really tired of feeling tired all the time. On the other hand, I'm a bit apprehensive about giving up my favorite activity - sleeping! Am I completely crazy?

My OSA is severe - 107 episodes/hour. My ENT said I get no quality sleep at all. I can sleep pretty much any time, anywhere. I've fallen asleep at my desk at work! It's mostly very frustrating, but I do wonder if I will miss taking long naps on the weekends. Curling up in bed and sleeping has become a favorite activity for me.

Just wondering if anyone can relate.

[Julie]

Absolutely! If the only time you feel good is finally getting to 'sleep' (however lousy it is, especially if you're unaware it's bad), of course you don't want to lose it. But then wait til you start to feel really good again being awake - it's probably been so long that you've forgotten what it's like! BTW, you really should fill out your profile (see area under everyone else's notes) with your equipment, etc. and any other info you think will be meaningful, so when you have questions, we can immediately see what you're dealing with.

[CorgiGirl]

Welcome to the forum.

I can relate, Bluebonnet Gal! I haven't taken a weekend nap for three months (after a month on CPAP therapy). I couldn't even do it when I wanted to! For a little while, I was sad that I wouldn't have naps anymore. But now I don't miss them and I'm really glad that I have more energy and that I don't need naps anymore.

I don't want to dampen your enthusiasm about starting therapy, but I do want you to be aware that things don't go 100% smoothly right off the bat. It takes most of us a few weeks and sometimes trying several masks to get things right. For me it was 6 weeks and 8 masks before I could keep the thing on all night, most every night. And I have the occasional bad night. So be prepared to be patient!

There's a wealth of information and experience here, so don't be afraid to ask questions and share your experiences. I'm glad you're here!

[sleepycarol]

May I suggest you read up on the various types of machines available.

Depending upon your needs and your doctor's opinion you will probably be prescribed a cpap or an apap. Many DME's will try to give you the bottom of the barrel machine that does not provide any real details about how your therapy is going. Educate yourself about the machines and be an informed consumer when picking you machine up from the DME.

Good luck and keep coming back for help if you need it.

[Bluebonnet_Gal]

Thanks so much everyone. You've really made me feel better.

I've already found a wealth of information here and I've learned so much. I'm glad I found this forum before my visit to the DME. I will go into this much more knowledgeable - thanks to you guys!

I didn't get a copy of my prescription from my ENT and I don't have my equipment yet, so I can't fill out all the info in the profile. I only have a copy of my sleep study because I asked for it. I'm going to call my ENT tomorrow and ask for a copy of the prescription. Sounds like it's a good idea to have it in hand when I go in to see my DME. Here's hoping I have a good DME! I haven't had to deal with them yet, so I really don't know.

Thanks so much guys! I'm sure I'll be back often looking for answers to more questions and I'll keep you posted as I get my equipment and start adjusting to life on C-PAP.

[rested gal]

Welcome to the message board, Bluebonnet_Gal! I like your last name.

sleepycarol made a good point about the "basic" type of machine most DMEs give to most people. Machines that can't give you any details about how your treatment goes.

Right now -- BEFORE you accept a machine from the DME (durable medical equipment... "DME" is message board shorthand for the home health care supplies store that will give you the machine and mask)... right now is when you have the most bargaining power. The DME wants your business and knows there are probably other DMEs you could take your business to, if one DME doesn't have the machine you want.

Of course, it's all Greek to you right now, and you really don't have any idea what machine you do or don't want. You're at the DMEs mercy. Well, actually, not quite...since you have this message board to turn to.

Here's a clickable link to a list of machines that record "full data" and those that don't -- as of October 2008:
viewtopic/t35685/viewtopic.php?p=307168#p307168

Call your DME BEFORE they bring you a machine or have you come in to get "your" machine. Find out the full name of the machine they plan to give you. Write down EVERY word in the name they tell you. Get them to repeat it. If they just say a brand name and don't tell you the whole name of the model, pin them down to giving you the entire name of the machine. Then check the list.

If the machine they have in mind for you is one of the ones listed as providing "full" data, great! But if it's one that doesn't provide "full" data, I'd tell the DME, "Actually, I'm looking for a ____ (full names of a couple of ones that provide full data.) Can you provide either of those specific models?"

If the DME starts querying you or acting like they know best what you "need", or start telling you what your insurance will/won't pay for, or start in on "this is what the doctor prescribed for you", blah-blah... don't worry about trying to understand what they're saying. Just say, "Well, I want a machine that records AHI and leak data, so my doctor and I can look at more detailed data than just 'hours of use.' If you don't carry that kind of machine, I guess I'll have to shop around. Do you have a ______ or _______ (give 'em a couple of choices) machine to fill my prescription with?"

I know, I know...sounds like a lot of homework when all you want right now is to get "a machine" and get started on this grand journey.

Now is the time when you have the best chance of insisting on a machine that can really help you help yourself. If you want to be pro-active in your own treatment, you'll need a machine that gives you more data than just the "hours of use" the most basic machines record. Basic machines (more profit in them for the DME) are what most DMEs want to give you, because the reimbursement they get from insurance for "cpap" is the same whether the machine records just "compliance" (hours of use) or can also show AHI and leak data.

[Bluebonnet_Gal]

"Rested Gal" - that's what I want to be!

Thanks for the info and the link. I know my ENT wants me on an AutoPAP and I'm pretty sure he wants one that records full data. He mentioned those things when I last went in. I'm supposed to spend about 6 weeks on the AutoPAP, then come in for an appointment to see how it's going. I don't exactly understand how the machines record the data and how it is retrieved. I did see mention of a "Smart Card". How is the information retrieved and what do I have to take in for my next appointment?

Perhaps I'm getting ahead of myself. Hopefully I will have some instructions with the machine and some guidance from my DME.

My ENT's office faxed my prescription and paperwork to a DME that's about an hour drive from my home(I live in a rural area). The lady in his office that handled this was so new and didn't know what she was doing - she couldn't answer my questions at the time. She just told me to expect a phone call. She thought they were going to mail me a machine. I was concerned about what mask I might end up with, but I thought that could be resolved later if needed. When I found out it was a "brick and mortar" DME and where it was located, I decided to contact a DME that's about 20 minutes from my home. I then called my insurance company and ultimately called my ENT's office and had the paperwork faxed to the DME of my choice. After reading many posts here, I'm wondering if the ENT uses a specific DME because they are honest and a "Good" DME. I say all this just to say that I DO have options and if I don't get the service I'm looking for from the more local DME, I will call the one my ENT contacted in the first place and see if I get better service from them.

I see now that it's a great idea for anyone who is considering scheduling a sleep study because they suspect OSA to come here first and prepare! Thanks so much everyone for the great support and advice!

[rested gal]

I know my ENT wants me on an AutoPAP and I'm pretty sure he wants one that records full data. He mentioned those things when I last went in. I'm supposed to spend about 6 weeks on the AutoPAP, then come in for an appointment to see how it's going.

That's probably going to be just a "trial" on autopap. Using it for the 6 weeks so the doctor can later see (from the data recorded on the machine's "Smart Card") what will be a good single pressure to prescribe for you. Then the DME generally takes away the autopap and gives you a less expensive straight cpap machine, set for the pressure the doctor prescribes. That's when you'll have to be alert and on your toes so that the cpap machine the DME replaces the autopap with is a cpap machine that can record full data. Actually, I'd be plotting and planning during the 6 weeks to try to convince the doctor to tell the DME to leave the autopap with me as my permanent treatment machine, even if he wants you to be on just one pressure after the autopap trial period. Any autopap can be set to operate at one pressure...in "cpap" mode. So the only real reason for it to be whisked away from you and a plain cpap machine given to you instead, will be because the DME wants to give you a less expensive machine.

The DME will beamingly tell you, "Here's your NEW machine." And you'll no longer have the autopap. You'll now have a less expensive "cpap" machine.

So, at the "6 weeks appointment" with the doctor, try to talk him into writing a very specific RX for "autopap" rather than "cpap." If he wants you to use just one pressure but is willing to let you have an "autopap" machine, he can write the Rx for "autopap set for cpap mode @ 10 cm H2O and heated humidification." The "10 cm H2O" is just an example...the doctor will decide what pressure number to put there.

It will depend on how cooperative the doctor wants to be about your request for "autopap" on the prescription. Hope he goes along with that. You'll have two machines in one then, since an autopap can be used as a straight cpap at one pressure, or as an auto-titrating cpap using a range of pressures varying as needed throughout the night.

You've got six whole weeks to dig into the message board and prepare yourself to try to keep the autopap. Good luck!

[CorgiGirl]

So, at the "6 weeks appointment" with the doctor, try to talk him into writing a very specific RX for "autopap" rather than "cpap." If he wants you to use just one pressure but is willing to let you have an "autopap" machine, he can write the Rx for "autopap set for cpap mode @ 10 cm H2O and heated humidification." The "10 cm H2O" is just an example...the doctor will decide what pressure number to put there.

It will depend on how cooperative the doctor wants to be about your request for "autopap" on the prescription. Hope he goes along with that. You'll have two machines in one then, since an autopap can be used as a straight cpap at one pressure, or as an auto-titrating cpap using a range of pressures varying as needed throughout the night.

You've got six whole weeks to dig into the message board and prepare yourself to try to keep the autopap. Good luck!

This is pretty much what I did, except that I told her at my first appointment following my sleep study that I'd done my homework and wanted an APAP. She wrote "AutoCPAP equipment per patient" on my prescription, so I had no trouble keeping the APAP.

A friend of mine had to remind her doctor that she was the client and the doctor was the employer and it was his job to do what she wanted as long as it wasn't going to endanger her health. She got her APAP, too....

Good luck!

[Bluebonnet_Gal]

Thanks so much for the feedback.

The only concern I have about keeping the APAP is cost. My insurance company told me I would be renting a machine. It is subject to my deductible which is $1,000. Then my insurance will pay 80%. I have met my deductible for the year, but the year is almost over.

Do most of you rent your PAP machine or own it?

[cflame1]

I think that you'll find that most of us will purchase.... either through our insurance or out of pocket.

Some insurance will convert a rental into a purchase after so many months (and some on request)... but you need to figure out what your part of the payment would be and if it would be cheaper in the long run to get the script and purchase it out of pocket. If your insurance is rental only... it would probably be cheaper in the long run to buy the machine online... especially if you have to deal with a high deductible next year.

[CorgiGirl]

We have to "rent to own" because it is Tricare's policy, but our out-of-pocket will be mostly paid for by the Tricare supplement policy my husband and I purchase.

I'd have them go ahead and buy it, but I asked and they won't. They did go ahead and buy Nick's humidifier because he'd been a CPAP user for 5 years already... Go figure.

[Bishop]

Blue Bonnet Gal ,


As to your statement about missing your naps at those odd moments or on the weekends......after you get a few full nights of good sleep those weekend naps and those times you just fall asleep will be a thing of the past. Believe me Good sleep is much better than being able to do what you think is sleep. Follow the advice of the posts above. Watch your DME. Make sure you get the best possible equipment you can. Also dont give up on masks make sure you get "the one" that works best for you. I had to go thru 5 different masks before I got one that let me sleep all night long. It makes all the difference in the world.

Just make sure you get whats right for "YOU" and I hope you start having those nites that give you some awesome dreams that I am sure you have not experienced in awhile.....It was great when I woke up in the morning and had actually dreamt lol I hadnt had a dream in years.....LOL its the little things isnt it?