Newbie self educate before Dr's appointment.

[Patth9]

Hello to everyone, this is a very informative site, been reading the posts and enjoying the teasing.

I've had 2 sleep studies and the next step is to visit the Dr. and find out what my wavy lines mean. I've learned the hard way that it is best to self educate one's self as much as possible before visiting any doctor, not unlike learning about your car before taking it to a service station.

A friend of mine, same age 65, told me about her Respironics CPAP and nasal prong mask. (BTW - Had no idea what the nose hole was called until reading your posts. Nair, who knew!) I am starting at ground zero. Would like to know who is happy with their respiratory unit and mask, if you please. While undergoing my sleep study, the air flow was changed to the bi-level, which I found much easier to tolerate.

I realize these CPAP units need a doctor's prescription. Can anyone shed some light on how much choice one has when it comes to picking a unit, or are you obliged to take what ever is offered or buy your own without benefit of insurance?

Sure happy I found this site, and happy to learn there are those who have found improvements in their sleep. My husband has a CPAP and has never managed more than 2 hours at any one night. Needless to say, he doesn't wear it.

Patt

[scrapper]

You need to arm yourself with a list of fully data capable machines, and accept nothing less...........and don't believe the salesperson. Many pawn off machines that only tell you the number of days and hours used and call that fully data capable. It is not. There are many posting out here listing the machines.

Your insurance company will pay the same if you chose the top of the cpap line or the bottom, so of course they are often pushing the bottom while you want the top of the line.....AND YOU HAVE EVERY RIGHT TO THE BEST.

Personally I have the ResMed AutoSet II automatic cpap and am very happy. I alternate between the Activa LT nasal mask with the new comfort gel insert and nasal pillows........

[scrapper]

Another thought I had after the fact.....is you can read and gather opinions here and ask your doc to write a script for a specific machine. Many docs are perfectly willing if you have done your homework.........then the dme has no options.

[Patth9]

Thanks, Scrapper, for your advice.

I have copied your thoughts onto my documents so I can read them off line too. I licked on the links you provided and noticed the software link reads that the software is no longer available. Just thought I'd mention it.

I think without your information, I wouldn't have realized how much say I can have. For that, I am certainly grateful. I will keep up my quest for more leads to help myself.

Patt

[Patth9]

Put this PM in the wrong place, so I deleted it.

[JohnBFisher]

... this is a very informative site, been reading the posts and enjoying the teasing. ...

Who us?

... it is best to self educate one's self as much as possible before visiting any doctor, not unlike learning about your car before taking it to a service station. ...

Good analogy. And quite applicable at all sorts of levels.

... Would like to know who is happy with their respiratory unit and mask, if you please. While undergoing my sleep study, the air flow was changed to the bi-level, which I found much easier to tolerate. ...

Well, I've used Respironics and have been very happy with them. However, I've recently switched to a ResMed unit. I am VERY pleased with the "feel" of the ResMed units. The same technology is used in the new S9 units from ResMed.

As others have noted, you want to get a data capable unit. You want to track your therapy. See if you have mask leaks, see if you have apneas, etc. It definitely makes a big difference.

... Can anyone shed some light on how much choice one has when it comes to picking a unit, or are you obliged to take what ever is offered or buy your own without benefit of insurance? ...

Well, it depends on the DME. Talk with them. Interview them. Your insurance company should be able to provide you with a list of providers in your area. And some insurance policies will reimburse you for purchases you make off the internet. You want to talk that over with your insurance company first.

But INSIST on a data capable unit.

... My husband has a CPAP and has never managed more than 2 hours at any one night. Needless to say, he doesn't wear it. ...

I assume you know the adverse impacts of untreated sleep apnea. It includes increased risk of heart attacks, stroke, high blood pressure, weight gain, type 2 diabetes, and if he suffers from excessive daytime sleepiness and does NOT use a CPAP unit, if he has an accident, it leaves him/you open to liability issues. You might want to check his prescription. It probably states something like the following:

The above named patient was diagnosed as indicated. Due to the potentially dangerous consequenses of distrubed sleep and sleep deprivation, which include the possibility of falling asleep in critical situations, treatment of this condition is considered mandatory rather than elective, on a nightly basis for a long term to lifetime duration (99 months).

[DreamDiver]

A lot of really excellent kernels of information can be found in the wiki. Click the yellow light bulb at the top of the forum.
I liked my Phillips-Respironics M-Series Pro - a fully-data-capable machine, but I really love my ResMed S9 Autoset. If you want to stick with Phillips-Respironics, there is the System One Auto, another excellent fully-data-capable machine. Make sure you get the accompanying heated humidifier any either machine.

[Patth9]

Thanks Dreamdriver and JohnBFisher,

Foresure, I didn't know about driving and not using one's CPAP was against the law. Will certainly use this to my DH's advantage.

I only had one night's experience with a CPAP, or should I say 5 hours. After about 45 minutes, I yelled out, "Is it suppose to be this hard to breath?", that was a little after I yelled out that I thought there was something wrong with the CPAP as there was air coming out strongly. Of course, that was the exhale air. Could have died without that leak. The RT changed my wind to the bi-level and that helped a lot. My DH (dear husband) has never heard of the bi-level. Perhaps when I get one, he can see the difference. I hope my getting a B-PAP will encourage him. I'm not ready to let him go just yet.

BTW, what does DME stand for? And, please tell me how to send a PM, or where to find the instructions, apparently,I failed at that task.

Adding all this great advice to my educational cheat sheets.

Patt

[cflame1]

DME - Durable Medical Equipment (provider)

to send a PM... use the "User Control Panel" near the top of the screen

[JohnBFisher]

... I didn't know about driving and not using one's CPAP was against the law. ...

This whole journey can be an eye opener. And as both automobile insurance companies and as legislatures learn of the definite safety risk that a sleepy driver poses - but can be address with CPAP ... well, it's really no different than when someone decides to get behind the wheel of a car if they are impaired. Having been in some of those close calls before diagnosis, I can understand why!

... The RT changed my wind to the bi-level and that helped a lot. My DH (dear husband) has never heard of the bi-level. Perhaps when I get one, he can see the difference. I hope my getting a B-PAP will encourage him. I'm not ready to let him go just yet. ...

There really are lots of options. The machines are better. The heated humidifier work better in them. There are more options to make it easier to breathe (exhale is the hardest part). And BiPAP may be what the doctor ordered. Or perhaps either ResMed's EPR (exhale pressure relief) or one of Respironic's Flex technologies. They make it easier to breathe against the continuous pressure.

... BTW, what does DME stand for? ...

Cflame1 answered that nicely.

... And, please tell me how to send a PM, or where to find the instructions, apparently,I failed at that task. ...

Don't worry. As Cflame1 noted, you can use the control panel. Or if you note below my picture to the left of this reply there is the number of posts I've made, when I joined, my gender (should be pretty obvious) and a "PM" icon. If you click on that, it will allow you to send me a Private Message and will automatically quote my post. A nifty tool.

Hope that helps.

[rested gal]

Welcome to the board, Patt.

Here are a couple of links that might come in handy when you start talking to the doctor or the DME about which machine you want. One that can give AHI and Leak data is what we call "full data" here on the message board.

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated through March 2010:
viewtopic.php?p=307168#p307168

DME might not understand what "Full data" is.
viewtopic.php?p=344265#p344265

Since they switched you to bilevel during your sleep study, and you'll probably be given a bilevel machine, this might be useful to know:

"BiPAP" is Respironics trademark name for their bilevel machines.

"VPAP" is ResMed's trademark name for their bilevel machines.

Often any brand of bilevel machine is referred to as "bipap", kind of like how any facial tissue is often referred to as a "kleenex" even if it's the Puffs brand. Or like any brand of lip balm is often called "chapstick."

[Patth9]

WOW, I have read so much on the CPAP topic, I think I'm on over load.

Even though I haven't posted for a few days, it's not because I have stopped researching. I am so grateful for all the information. I have learned so much!

One thing I learned has nothing to do with CPAPs per se, it has to do with how Drs. and Sleep laps operate. When I phoned to get an appointment with my Dr., I was told I wouldn't be able to see the Dr. until May. "Yeek!", I said, "I'm told I have sleep apnea and it is dangerous, but I can't see my Dr. until MAY???" I was blown away! Why don't they educate the receptionists on how things work. Long story short, I learned from a different source that the sleep lab, (I guess the DME) will phone me to come in and will provide the CPAP etc. Then, by the time I see the Dr. I will have been wearing the CPAP/VPAP/Bi-PAPA ... for over a month and he will then know if he was a successful Dr. where I'm concerned. These small things are learned the hard way I guess, but I really don't think hard knocks are necessary if only the time is taken to share knowledge by those holding my emotions in their hands.

After reading all the links that Rested Gal provided, and clicking on numerous sites and eye-balling scores of devices/masks/hoses/pillows/ yada, yada, yada. I decided to go to a place that sells these devices and touch them. Loaded with Rested Gal's list and notes, and the notes of others who offered advice, perhaps I will at least sound like I know what I'm talking about and what my rights are.

Thank You Lord for this Forum and the friendly folks who do their best to educate we CPAP seekers of truth.

Till I return,
Patt

[dave21]

I was told I wouldn't be able to see the Dr. until May. "Yeek!", I said, "I'm told I have sleep apnea and it is dangerous, but I can't see my Dr. until MAY???" I was blown away! Why don't they educate the receptionists on how things work.

It happens everywhere like this, even in the UK. They have a good idea that you're a candidate for Sleep Apnea and they then have you take a sleep study, bring you in and scare you with the figures (and it does just that) and then either send you away for a month or say we don't have a machine for you to try for a month.

Sleep Apnea can be life threatening. Our brains for the most part do wake us up, and we just get terrible sleep and our organs do not rejuvinate like they should when we're sleeping which makes us fatigued and tired but likewise it has been known for people to die in their sleep due to sleep apnea if their brains aren't able to wake them up. Likewise if you are driving or operating heavy machinery and are suffering from sleep apnea it can be fatal if you were to have an accident because you're not alert enough.

[Slinky]

Call your insurance company and ask them what local DME providers they are contracted with. Those are the ones you will want to "visit" and "shop" before getting/accepting any equipment.

Most local DME providers buy their xPAP stock in quantity from a particular manufacturer to get a bulk price and that brand will be the xPAP they prefer to provide. They will be more willing to bargain/negotiate to give you a top of the line xPAP if you will accept that particular brand. So - use RestedGal's list of fully data capable xPAPs.

Your script doesn't have to be too specific as long as it includes a statement to the effect: access to Leak, AHI and AI required. That leaves you free to accept any brand as long as the model is fully data capable but it prevents any misunderstanding or claimed misunderstanding by the DME provider as to just what full data capabilities are.

[rested gal]

WOW, I have read so much on the CPAP topic, I think I'm on over load.

Even though I haven't posted for a few days, it's not because I have stopped researching. I am so grateful for all the information. I have learned so much!

Patt, you're going to be a "CPAP success." Might be a rocky start for awhile, but you're curious, determined, and smart. You're going to do fine...I'd bet on it.

I've often said, if a person wants to be proactive about their own CPAP therapy, they should dig into this message board as if they were a medical student studying for the exam of their life. Because that's what CPAP therapy is about -- your life.