introduction

I have been lurking since I joined a few days ago, reading up and learning more about sleep apnea since I was diagnosed the other week. Boy am I glad I found you guys!

I had my sleep study a over a week ago and only received enough information to know that I need another study ("33 events per hour, 83% oxygen"). They wanted me to wait over 3 weeks for the titration study but after calling 10x a day for 3 days they were magically able to fit me in tomorrow night. I'm to the point where I can't work, drive, clean or enjoy anything so I am a wee bit motivated.

As soon as I get the study, I'm hoping I can immediately get a prescription and buy a machine. After reading here and at the recommendation of my father, I would like to go directly to an apap machine with efficacy data so that I can monitor how I am doing and work with my physician without requiring as many sleep studies (which at 4K a night is $$$). I plan on asking for a prescription for a Resmed S9 AutoSet, heated humidifier and heated tubes and a nasal pillow (either Swift FX, Nano or the Airfit P10). I hope this doctor goes along with that but if he gives me grief, I'll get a printed prescription for "cpap machine" and I assume I can use it at cpap.com?

So far it's been a huge trial with this hospital so once I get a machine, I have a list of recommended doctors to interview to work with long term. The hospital takes forever, doesn't give me my results, refuses to transfer my sleep order to another facility so I could be seen sooner, etc. I'm not sure how things are supposed to work but I feel I deserve better.

Anyhoo just saying hi. I'll report back with my results and update my profile with equipment when I have it. *waves*

Welcome to the forum! Work all your issues here!

Sheriff

Welcome to the forum. Sounds like you have done your homework. This waiting part is so hard.

I also chose a nasal pillow mask right from the beginning. I had my reasons for not wanting the others and my reasons are the most important reason. I have used some sort of nasal pillow mask for over 5 years now. Have changed to newer models as they have been released. Using the P10 right now.
Used the Swift FX for a couple of years...if you like it you can use the Nano cushion with the swift fx gear or get the Nano gear and just buy a nasal pillow. They will work together despite what ResMed says so that you have to buy both. They want you to spend more money. I already had the Swift FX pillow stuff so I just got the cushion....though I would suggest that the Swift Nano short hose assembly is superior to the other..the Nano is newer design....so if you are looking at going that way just get the Swift FX Nano package...and let me know you did because I have some brand new never used Swift FX nasal pillows that I can give you.

Hi Daytona,

Welcome! Glad to see you here. I "know" you from 3 forums

It sounds like you are educated, fired up and ready to go.

Your experience is not unusual. As a matter of fact, your persistence has sped some stages up (i.e. getting in on a cancellation at another clinic, as you mentioned in the other forum). Usually this is a futile exercise in "hurry up and wait". They tell you how dangerous sleep apnea is, then make you wait weeks to months between appointments, sleep lab tests, DME's etc. Very frustrating when you are feeling lousy and sleep deprived. You are using the wait time well in educating yourself so you aren't going to have to play any stupid DME games. Knowledge is power.

I hope it all goes smoothly for you.

Thanks for the warm welcome! And thank you Janknitz for pointing me here.

I had my titration study last night and now I'm playing the waiting game for a prescription. They said 10 days... we'll see about that! I can be very annoying when I choose.

I first tried an over the nose mask but I think she tightened it too much. I couldn't fall asleep because it hurt my cheekbone, spent quite a bit of time lying the dark, wondering if it was just me being silly about having something on my face or if it really hurt. I know they say to just speak into the room for whatever I need but I'm so used to "procedures" like an MRI where if you shut up and deal with it, it's over sooner... I don't do my best thinking sleep deprived in the middle of the night!

She then put on a different type that goes over my nose and mouth. She didn't over-tighten this one and the pillows (?) were soft enough that I could fall asleep. I assume that regardless of what she thinks, I can try out and decide for myself later which is the right mask type? I was hoping to try a nose pillow but when I brought it up she commented about how people always think they know what they need...

I did not sleep much, hopefully more than an hour or two of sleep isn't required for the titration. I could feel her trying different settings and for the most part, I don't expect a huge problem settling in with a cpap. I really like the feeling of the air and having my nose unstuffed for me. I don't get claustrophobic or feel like I can't breathe. The only part that I didn't like was when she tried the a-flex setting, that switched me from normal breathing cadence to playing catchup!

On the bright side, I woke up feeling pretty good in the old brain box, not as groggy and fuzzy as I normally do. I had a number of apneas at the beginning of the night which woke me up (the mask amplified the snorting noises ) but I think we found a good pressure by the end.

daytona wrote:I was hoping to try a nose pillow but when I brought it up she commented about how people always think they know what they need...

And surprise surprise sometimes we even actually do know what will work for us.
I had a similar tech during my titration study and after the nasal cushion mask totally closed up my nose and hurt my neck I told him I wanted nasal pillow mask...he tried to change my mind...wanted me to use a FFM but I just told him it's nasal pillows or I won't sleep...take your pick.
That was over 5 years ago and I still use only nasal pillows.
Why they resist trying simplest first is beyond me.

Pugsy wrote:Why they resist trying simplest first is beyond me.

they 're EXPERTS! what do you know??? you're just a patient! you need to be COMPLIANT!

er, sorry.. *lol*

palerider wrote:

Pugsy wrote:Why they resist trying simplest first is beyond me.

they 're EXPERTS! what do you know??? you're just a patient! you need to be COMPLIANT!

er, sorry.. *lol*

Heh, I'm new to sleep apnea but I have already run afoul of that way of thinking with my diabetes doctors. If I could get supplies without prescriptions, I'd never see a doctor again!

I just called again and checked up on the status of my titration results and see how soon I could get a prescription. After all this time the receptionist tells me that the doctor only works Mondays and because of Labor Day, I won't have my results until next Tuesday at the earliest. No wonder I have had such problems trying to get anywhere with these people!

Not to wallow too much in drama but I requested my medical records and I'll still waiting for those. They also refused to transfer my order for a titration study to another location so that I could have it done sooner. They are a black hole that keeps toying with me, promising that starting over with a new sleep doctor would take longer than simply working with them...

I have an appointment with my new GP tomorrow. I was really hoping she could use the results and write me a prescription since this other doctor doesn't feel like treating me in a timely fashion. But I am betting dollars to donuts, the other doctor will not have transferred anything. I doubt she'll take me at my word about my sleep apena diagnosis and the results of the first study.

I saw someone else on this forum mention that 1-800-cpap will write you a prescription over the internet for $99. Hell I'm willing to pay whatever it takes if I could just get even an hour of sleep... Anyone know if that is legit? Because if I get nowhere with this new doc tomorrow, I'll pay it in a heartbeat!

daytona wrote:I have an appointment with my new GP tomorrow. I was really hoping she could use the results and write me a prescription since this other doctor doesn't feel like treating me in a timely fashion. But I am betting dollars to donuts, the other doctor will not have transferred anything. I doubt she'll take me at my word about my sleep apena diagnosis and the results of the first study.

I saw someone else on this forum mention that 1-800-cpap will write you a prescription over the internet for $99. Hell I'm willing to pay whatever it takes if I could just get even an hour of sleep... Anyone know if that is legit? Because if I get nowhere with this new doc tomorrow, I'll pay it in a heartbeat!

well, first thing I'd try is talking it up with your new gp, and see she'll just cut through the BS and write you a rx for an autoset.

failing that, there are places on the internet that will, if you have a sleep study report, write you a rx. (it wasn't 1800cpap that I'd heard of, though they may have started doing it too... I don't know).

failing that, there's always going rogue and hitting up the black market, er, craigslist/secondwindcpap, or stlmark here.

Put that $99 towards a machine from Craigslist or someone here on the forum. I'd look for an auto.

Thanks I hadn't even considered a used machine as an option. *face palm* I could do that and then have insurance buy me a fancy new one when the red tape is all figured out.

exactly, then you will have your backup machine.

Just do your homework and don't buy a brick and don't overpay - compare the prices with our host.

There are some new or barely used machines out there. With the help on this forum you will do fine.

The $99 deal is apparently only for people who have had a CPAP before (though maybe they would give you that offer with an actual copy of your sleep report) - everybody else has to also pay a few hundred for a home sleep study using equipment they ship to you. I agree - save your money, wait the extra week, get the prescription, then say adios to the doctor. Buy the equipment from CPAP.COM, secondwindcpap.com, or Craig's list. While you're waiting, if you see StLMark post about having machines for sale, jump on it and buy one from him.

Your GP may be willing to write the prescription if you can just get him/her a copy of the diagnosis... CPAPs aren't like pain pills - few people who don't really need them ask for them...