Hi Everybody (newbbie questions....)

[JustDiagnosed]

Hi all,

I was just dx with sleep apnea... have been reading a few bb's on the subject and have a few questions I'd like to ask to those willing to share some knowledge...

A little bit about me:

35yo, male, married, sedentary most of the time;
Deviated septum;
Enlarged tonsils;
Dx with mild to severe sleep apnea, just did a follow-up sleep study with a CPAP trial and am waiting on Apria to get my machine (I'm a heavy mouth-breather and was really a hell of an experience having to breath through my nose only during the follow up sleep study);
headaches (some migraine), fatigue, driftness (work & school), overall lack of motivation to keep up with things (feel a little depressed bcause of that sometimes);
Insurance Plan will pay 100% if I use their "recommended" DME (read: Apria), otherwise will pay 80%;
ENT & the Specialist who conducted the sleep study suggested that I try the CPAP first but consider carefully having a surgery (bcause of the enlarged tonsils and deviated septum).

I would appreciate if you all could shed some light on a few questions I have...

1. Any tips on how I should handle my first contact with Apria’s technician/registered respiratory therapist (RRT) or the person who will get me the CPAP machine. Any traps I should avoid, any language I should use so that they’ll know what I am talking about and try to address my needs instead of throwing an “off-the-shelf” - "one-size-fits-all" solution at me?

2. What do the following acronyms mean:
CPAP readouts: AI=1/h, AHI=7/h (diagnostic RDI= 65 - 85)... these are not mine by the way... I will post mine once I get the resulst of the follow up with the CPAP trial...

3. What does it mean if one says "my DME doesn't routinely carry their machines (although they will order them)..." Does that mean that if Apria doesn't carry the machine I want I can ask them to order for me?

4. If I decide to buy myself what's the procedure? Should I go and ask my physician for a Rx or do I have to do this through Apria?

5. Is sleep apnea considered a disability (as in can I get a disability sticker for parking or other special accommodations bcause I have sleep apnea)?

I will get the results for the sleep study follow and will post for comments, until then please help me out by answering the questions I posted above.

Thanks in advance.

[Handgunner45]

I too am a newbie, but here is what I would do.

1. Do your research here and on cpap.com. Decide what you want for equipment. C-Flex is a great feature, and I would get something that you can download the info from so that you can track your own treatment effectiveness. Because like me, you profess to be a mouth breather you will probably want to try a full face mask (I am surprised they didn't try this during your sleep study).

2. Determine what the equipment will cost you on cpap.com with your co-pay. If you are willing and able to pay the co-pay and the DME isn't willing to work with you on the equipment that you want, talk to your ins to find out how to go about buying on line. Also check out billmyinsurance.com to see if they will work with your insurance.

You can find the meaning of the acronyms by clicking on the CPAPopedia links at the bottom of your post.

To buy on line you will need a copy of the prescription from you doctor. The DME will have a copy of your prescription but I dought that they will provide it to you. You could always ask, it can't hurt.

I would be surprised if you can get disability for OSA. I guess its possible but I would be surprised. I don't think most people are even aware that it is a serious medical condition.

Just my opinion for what its worth.

[chdurie2]

hey just diagnosed:

it may go better than you think. sounds like apria is willing to order if they don't have it. i'd be educated but not defensive.

my sympathy for the deviated septum. it may make cpap rougher and tougher, but the relief may be greater. buy some nasal saline solution and be prepared to squirt yourself every nite. you have to be de-stuffed up before cpap will work. i've found spraying saline solution more effective than inserting as a drop. probably you should buy some ayr gel also, but a lot of people have a problem with a steady diet of ayr gel--it hurts some even after a few days.

you will need a full-face mask because of the deviated septum, and that may be all you can wear. i think the ultra mirage full face mask is the best but the fisher & paykel 431 has fans too. the difference is that F&P 431 has a chin rest built in for big mouth breathers, but i find that if i'm not de-stuffed up, i can mouth breathe to the point of creating leaks with either mask. it's much harder to mouth breathe with a full face mask generally.

i also have a swift (nasal pillows) and an activa (flexible-to-movement nasal mask) and oddly enough, i find the swift better protection against the deviated septum. i sometimes find with activa that i can de-stuff myself before sleep and i wake up in the middle of the night stuffed up again. but i can't use swift every night because my nose gets too dry and then irritated from the combination of swift air and saline. vaseline combats the dryness, but it gets to be a pain stuffing my nose with both saline and vaseline.

i don't know whether your deviated septum will be as cumbersome as mine is. it does not, by any means, make cpap impossible, but it is a constant extra factor to deal with.

good luck.

caroline

[Selena]

No, I don't think you can get a parking sticker because you're sleepy. C'mon!

[Guest]

5. Is sleep apnea considered a disability (as in can I get a disability sticker for parking or other special accommodations bcause I have sleep apnea)?

I don't know if you're asking for yourself, or just curious, but there are pretty strict guidelines for obtaining a handicap parking permit. There are so many people who actually need those spaces. Others who try to get the permit just for the sake of getting a convenient spot for their car, or because they're tired or overweight and don't like walking too far do not qualify. The irony is, if you're tired or overweight and don't like walking too far, that is when you really need to be walking. It may be a chore, but it's good for us whether we enjoy it or not. They should probably devise a system where we are required to park in the spaces farthest from the door!

What "other special accommodations" did you have in mind?

[NightHawkeye]

They should probably devise a system where we are required to park in the spaces farthest from the door!

Actually, that's what I do, even when I drive my wife's vehicle which has handicapped plates. She has CMT, a form of muscular dystrophy, wears leg braces and benefits from the close in parking. I don't need the close in parking and benefit from the exercise.

Regards,
Bill

[JustDiagnosed]

Do your research here and on cpap.com. Decide what you want for equipment. C-Flex is a great feature, and I would get something that you can download the info from so that you can track your own treatment effectiveness. Because like me, you profess to be a mouth breather you will probably want to try a full face mask (I am surprised they didn't try this during your sleep study).

Had I known half of what I know now, before going to my second sleep study with the CPAP trial... oh well... I am resarching as much as I can (mostly here and at cpap.com --- I posted the same message there and got some nice feedback). I pretty much know what I want (believe it or not it's the same combination you have - REMstar Pro 2 C-Flex w/humidifier, Ultra Mirage Full Face Mask with Headgear --- I would definitely like to get the sofware but have read that is really hard bcause some vendors will only sell it to docotors ?! --- will try anyway...)

Determine what the equipment will cost you on cpap.com with your co-pay. If you are willing and able to pay the co-pay and the DME isn't willing to work with you on the equipment that you want, talk to your ins to find out how to go about buying on line. Also check out billmyinsurance.com to see if they will work with your insurance. To buy on line you will need a copy of the prescription from you doctor. The DME will have a copy of your prescription but I dought that they will provide it to you. You could always ask, it can't hurt.

I'll skip my DME (read Apria) altogether if they're not willing to provide me with what I want (for which my insurance will pay 100%). I can definitely come up with the copay and will probably buy from an online story.

Just my opinion for what its worth.

Thanks a lot Handgunner that was very enlightening.

"i'd be educated but not defensive."

Hey Caroline... wise words... will keep that in mind...

my sympathy for the deviated septum. it may make cpap rougher and tougher, but the relief may be greater. buy some nasal saline solution and be prepared to squirt yourself every nite. you have to be de-stuffed up before cpap will work. i've found spraying saline solution more effective than inserting as a drop.

The more I read the more I'm convinced that I will need to de-stuff and will definitely have to use some saline solution for that... As previously mentioned I am thinking about getting a full face mask so hopefully that will help a little...

you will need a full-face mask because of the deviated septum, and that may be all you can wear. i think the ultra mirage full face mask is the best but the fisher & paykel 431 has fans too. the difference is that F&P 431 has a chin rest built in for big mouth breathers, but i find that if i'm not de-stuffed up, i can mouth breathe to the point of creating leaks with either mask. it's much harder to mouth breathe with a full face mask generally.

I pretty much know what I want (REMstar Pro 2 C-Flex w/humidifier, Ultra Mirage Full Face Mask with Headgear). Good looking out for the F&P... maybe being a heavy mouth breather the chin rest would be an asset... will look into it...

Caroline... thanks a lot for your post... I learnt a lot by reading it... will post back my experience being a deviated septum CPAP user as soon as I can... thanks again!

No, I don't think you can get a parking sticker because you're sleepy. C'mon!

Selena, you missed the point... is not about getting a sticker or being sleepy... but it's not a big deal anyway... thanks for you input anyway.

[Rapunzel111]

5. Is sleep apnea considered a disability (as in can I get a disability sticker for parking or other special accommodations bcause I have sleep apnea)?

I worked for the NC Division of Motor Vehicled (DMV) for almost 7 years,and in NC you can't get a handicapped placard (plastic thing that allows you to park in handicapped spots)for Sleep Apnea.I am not sure what the regulations are in other states,but if I were you,I would keep my apnea under the DMV's radar .I mean it.You will be sorry if you don't.The DMV loves to find out reasons why they shouldn't let you drive,and why they should make your life a living heck.They are definitely evil, and the less you have to do with that place,the better.
There is such a thing in NC called a ''Medical Program'' in which DMV sends a person supected to be unfit to drive to their personal doctor for a complete medical evaluation,and has the doctor fill out paperwork for you to give to DMV.From there,you might have a ''hearing'' which is a meeting with DMV Driver's License officers and DMV's medical doctor(yes,we had them on staff)and other people.Trust me,it is not worth it.Once they got you on a ''Medical Program''...they will hound you forever.
Handicapped placards are given out here with a doctor's recommendation for people that have trouble walking a certain number of feet,due to breathing problems usually,and other reasons,but only the local DMV in your state could tell you their qualifications.

[chdurie2]

hey just diagnosed:

i'm ready to sign up for the deviated septum operation. did your doc talk to you about that? what did he/she say? i've had a bad cpap week, de-stuffing every nite and then waking up in the middle of the night stuffed up again!

thanks.

caroline

[Hates2Snore]

Hi, I thought finding out I had sleep apnea would be cut and dry. There is so much to find out and learn about the equipment and if you don't have a company to take the time to fit you right and get the right mask you will not use it. That is not good. I found out that apnea is on a scale from, I think 1-20, I am a 12 for pressure. When I went to the sleep study for the mask fitting, they kinda of rush to to put either a nose mask or a full face mask on. I found neither one I liked. I am now using a Swift Nose Pillows. Look for it through Google. It is a piece with two nose holes and not all over your face. VERY comfortable. But I must warn you, the first night I woke up with a BAD sinus headache. You must find out if your insurance will pay for a humidifier with heat preferably, BIG difference. Other wise the air just dries up your sinuses and having suffered with headaches all my life, this was one more thing I did not need. I am up to about 3-5 hr. a night now. Do not be alarmed if you find you remove it in your sleep, it happens. Most of all a chin strap helps keep your mouth closed, I got a nice one on Ebay. All in all the Swift was my favorite out of all the masks out there. Hope this helps.

[woozle]

Hi there, have put in some postings, being new, and have gotten great info so far so thanks! I go in next wk to get my cpap machine. Was wondering how I get my results from the study? I was told to schedule an appointment with my doctor a few days after being on the cpap machine, which I will do. So at that appt. should I ask for a copy? and shouldn't they just give it to me?
just wondering how others obtain this w/ out a hassle. All I know so far is I stop breathing 74 x per hour and waiting another week for the cpap is getting to me!
Also, on the thought of the handicapped license - kind of scary/funny re; the DMV info - also, once you get the tx for osa, you won't be too tired to walk anywhere!

[chdurie2]

woozle--

you should be able to get a copy of your sleep study report without a hassle. you just ask. if they're reluctant to give it to you, then that's probably weird, but yes, sometimes you do have to ask. what's the biggie?

maybe i'm just cranky because i can't breathe and just woke up in a panic after sleeping for a few hours, but i don't think handicapped parking for apnea is very funny. i know lotsa people abuse handicapped parking but it's a different thing thn when something really makes you not be able to use your legs. as someone else said, c'mon....

if life gets great for you from here on in because you have an apnea machine, that's great. but for some of us, it just marks the beginning of a new struggle to get used to the equipment etc.

good luck and i hope it all goes great for you.

caroline

[Guest]

was saying the info on the dmv was scary/funny

[~AP]

If you want a copy of your sleep study or any of your health information, all you have to do is request it from your doctor. You should get it with no hassles what so ever. It is your personal health information and you have the right to get it. The doctor also has the right to go over the results with you so he/she may require that you come in to explain it all to you before giving you a copy.

Good luck.

[Guest]

Ok thanks! for some reason, my nurse for the sleep study seemed to think my dr would not give me this info - weird - wasn' t sure if the med profession thought we didn't know what we were looking at - thank you