New here! Camping with Respiratory Therapists

[cathyf]

Make sure that you get a machine with efficacy data, not just compliance data, and make sure that the data is user accessible. The game is that your insurance company will only pay for the machine if you use it a certain amount, so all the machines are built so that they record whether or not you have it on -- that's compliance data. There are machines that only record the compliance data and nothing else, so they are totally useless when it comes to figuring out whether the machine is doing you any good. Some machines record data on how they are working and how you are breathing, but that data is not accessible to you. That would be because they store the data on some proprietary device (which might mean that your doctor can't read it, either), or it might be because the machine is uncommon and so Sleepyhead doesn't know how to read the data. So beware that the machine might be accurately described as "having data" when it doesn't have the data that you need.

Anyway, get the exact product number and check it out here before accepting any machine from a DME.

[Denise_in_MI]

Thanks Archangel! Feeling very welcome here! Glad everyone is helping me weed through SO MUCH information. I'm going to look closer at the signature lines. I have written down what you have.

Denise

[JCWarrior]

Welcome Denise! I'm relatively new to CPAP (4/2014) so I don't have as much advice to offer as many here. I will say this forum helped me get through the rough spots!

For me, those rough spots were mainly in the form of feeling anxious when trying to sleep with the mask on, albeit a nasal pillow mask. I had several instances in the past where I was having sleep panic attacks and got to the point where just laying down in a bed made me anxious. I now feel this was a result of my sleep apnea.

Anyway, wearing the CPAP mask triggered this again and that was hard for me to get used to. I still deal with it sometimes but nothing like thise first few month's.

I say this because I want you to know that if you experience anything like this, know that it DOES get better.

The wonderful folks on this forum got your back!

EDIT: I wanted to add that some of the best advice (for me) that I read here was to "just breath". Sometimes when getting used to CPAP you might feel a tendancy to try to regulate or control your breathing. It's not needed. The more you can just let yourself breath normally the easier it is. I find that after I truly relax I can't even tell the unit is on.

[Guest]

Some machines record data on how they are working and how you are breathing, but that data is not accessible to you.

That would be the modem - avoid the modem at all cost. The bypasses you and goes to everyone else. Even when they tell you they will send it to you it will be later than you can get it off the machine yourself and it will not be as detailed. Avoid the modem.

My RT friends had better stay my friends and give me good advice! None of them are in the 'sleep' business. All are in hospital. I work for a major hospital system in the Detroit area.

They might be able to give unbiased advise the sleep RT's aren't able to. But then again they may not know much about sleep.

I take it the hospital doesn't have a sleep center?

[Denise_in_MI]

Sorry Cathyf, I missed you. Efficacy too...noted. Someone mentioned modem later...is this something that I need to reinvest in? I haven't seen a modem in a couple of years.

JCWarrier, Panic is a nice word for waking up thinking that you are being suffocated because something is on your face. Took a couple seconds for me to calm down and realize that I was OK. Am I supposed to let the machine breath for me (not fight it) or breath normal until I fall asleep? I don't know if that is a silly question or not. We always tell patients who are intubated to 'not fight the tube' and let it breath for you.

Guest, our hospital system has several sleep centers. My RT buddies don't work at any of them. I was sent to a sleep center more local to me. Modem....really? Is that a stand alone?

Denise

[JCWarrior]

Am I supposed to let the machine breath for me (not fight it) or breath normal until I fall asleep? I don't know if that is a silly question or not. We always tell patients who are intubated to 'not fight the tube' and let it breath for you.

Not a silly question at all. Try to breath normal. The machine doesn't breath for you.

Some people get a suffocated feeling if their pressure isn't high enough. This is different for everyone and the "high enough" pressure to avoid this feeling might be 6 for you and 11 for me.

I started by setting my machine to ramp up from 4-11 but I found that I didn't like the ramp for that reason. Felt like I was trying to get more air. I changed it to "no ramp" and I got used to it quickly. At first it feels like a lot of air but (again) as you learn to just relax and breath normal, it also feels normal.

I've found that if I get in bed and put the mask on right away and try to lay down and go to sleep, my breathing hasn't had a chance to relax, which is what it will be when your sleeping.... relaxed. That is the setting your machine will be set to. So if your breathing at your normal "awake" tempo/pressure, the setting may feel odd. Gie yourself a few minutes to chill out and relax and let your breathing slow down just a bit. Once you become used to CPAP, this may only be a minute or less.

Just want to give you some pointers to help you ease into it. The big secret (for me) is relax, try not to dwell/think on it, breath normal (again.... not thinking about it helps).

In other words, try to forget about it.

I almost forgot..... I also found the self hypnosis audio helped me get over the anxiety hump. If you feel this might help, I can point you to it. Really helpe me. It helped me shut my mind off and stop focusing on it as I tried to fall asleep. And "try" is the key word. The more we "try" to fall asleep, the harder it is to sleep.

The resistance you might experience during exhale will (in my experience) also normalize as you adjust to it. Although, I would also listen to others who have more experience with this.

I also found that having the right mindset helps to adjust to CPAP. I was in denial and kept telling myself "I don't want to have to do this the rest of my life". I was constantly agitating myself and creating anxiety. The more you can accept CPAP as a good thing for you, the easier it is to adjust.

I still hope that one day I won't need it (Maybe after losing weight) bt I have come to the understanding that if I do, so what. Some people where a retainer when they sleep so they don't grind their teeth. Mine just has a hose attached to it.

My wife calls it my Darth Vader mask.

[palerider]

Am I supposed to let the machine breath for me (not fight it) or breath normal until I fall asleep? I don't know if that is a silly question or not. We always tell patients who are intubated to 'not fight the tube' and let it breath for you.

these machines don't breath for you, the only ones that do that are the NIV and ASV machines.

all a regular cpap does is pressureize the air, you still have to do all the breathing work on your own. nothing at all like a ventilator.

[kjell]

First night with CPAP so it was hard to breathe for me. listened to the machine and breathing after it .After few days so I was breathing normally, so remember to relax and breathe normally without listening to the CPAP.
Kjell.

[Denise_in_MI]

Got a call back from our insurance carrier. They will pay 50% after meeting our deductible. WOW! We have a LONG way to go to meet our deductible!

Since I'm going to meet the deductible, I have a minor issue to see the dermatologist about, the gyno about. Of course I have a cardiac history. I can probably fit in another stress test by the end of the year....

...still waiting on the call from the sleep center....

[Guest]

The modem is a wireless type modem which they will sell you by saying they will check your progress. They may but then they may not. To me the most irritating part is they bypass the user. Anything sent to the user is after the fact (delayed) which does not help the user. You will want to know how you did when you wake up. At least I did, until I got everything dialed in - about a year.

[Janknitz]

The modem bypasses the user, BUT the data is still there on your machine and captured on an SD card which you CAN access through the free open source sleepyhead software we can help you get. At this time, there's no sleepyhead for Resmed S10 models, but it's coming.

Don't discuss user access to data with your DME. They will tell you that you can't and that you shouldn't. They may claim it's illegal for you to access it, that you don't need it, and may even deny that the machine can capture it. They will tell you that there's no patient accessible software. None of these statements is true. We can help you here to access the data and teach you how to understand it. At that point you'll know more than all your RT friends.

However, your first job is to understand how your insurance works to reimburse for CPAP machines and get the best data capable machine you can. I see someone already pointed you to my blog, especially the What You Need to Know BEFORE You Meet Your DME. Be sure you read it. Ask your insurer if they will count purchases made online at a place like our hosts toward your deductible.

With the deductible, if you use an in network provider, the DME is still supposed to charge you no more than the allowed price your insurance company will cover. Be sure to read "Don't Pay that Upcharge" in my blog as well, and don't let them talk you into more money for an EFFICACY capable machine or an APAP vs. CPAP.

[chunkyfrog]

If you demand a machine with leak numbers and event data, that would be efficacy data.
Some machines have even more, and it can be awesome, even if you are not a geek.

[palerider]

At this time, there's no sleepyhead for Resmed S10 models, but it's coming. .

first test version of sleepyhead with support for the as10 has been released, so far there's linux (compile your own) and mac versions. windows soon, so mark says

the test version is 0.9.8

[Drowsy Dancer]

Got a call back from our insurance carrier. They will pay 50% after meeting our deductible. WOW! We have a LONG way to go to meet our deductible!

Since I'm going to meet the deductible, I have a minor issue to see the dermatologist about, the gyno about. Of course I have a cardiac history. I can probably fit in another stress test by the end of the year....

...still waiting on the call from the sleep center....

OK, here are a couple of useful data points to know about insurance and CPAP, which is a horrendously complex topic.

The first is that the insurance code for ALL CPAP machines, from the humblest brick to the fanciest data-capable machine is the same: E0601. (If you need a Bi-Level or ASV, which are much more complex and offered for more complex problems, there's a different code). The insurance company gets paid the SAME amount no matter how plain or fancy the machine is. They have an incentive to give you the cheapest machine possible to maximize profits.

The second is that your insurance company may actually offer something called a "capped rental" whereby they bill you/insurance monthly for 13 months, and at the end of it you own the machine, or sort of own the machine but not really (to make matters more complex, typically insurance will purchase the humidifier outright but pay for a rental of the CPAP itself) (*I can give you more details if you want but it's REALLY complex). If you're trying to get past a big deductible, you might be better off trying to buy the machine outright, or paying for it out of pocket and getting reimbursement from your HSA).

[Guest]

If you're trying to get past a big deductible, you might be better off trying to buy the machine outright, or paying for it out of pocket and getting reimbursement from your HSA).

Good point... and that reminds me that some insurances start the deductible all over again in Jan. Don't ask me how it works; I have never been subject to it but it is something to consider this time of year. Buy from CL then in Jan start with insurance. That is something you will have to find out how your insurance works it; esp. if it is a 13 month rental.