Very new, very confused, and on behalf of my husband

[Elvira]

Hello and thanks to all who might reply and help.

My husband has been diagnosed with Sleep Apnea and told that he must have a CPAP. More information available, but have to work through it. I have been reading a little here to try and understand what the future holds!

My first question for today, after the little I have read, is whether having a machine with a print out of information is the best. Does this print out give you an idea of how your sleep is going? Who reads this - my husband or does it have to go to a doctor?

I have a lot more questions, but would really appreciate an answer to this one as a first.

Thanks very much.

Elvira

[wmcanally]

Hello and welcome. Im new here too and will let the experts answer . But id say you do want a full data machine. Mine is listed in my profile below. You can remove the SD card and read the nights sleep results ( SD reader and software, i use sleephead, but theres better out there). There are people here that will help you understand what your reading, dont worry about that. And i can say the Dr too will remove this SD card and view the data.

Again you will get some excellent advise here. I have recieved wonderful information. Read the New users at the top of the page.

Welcome to the world of Hoseheads!!!!

[bdp522]

Welcome to the forum! Yes, it is important to get a machine with full data capabilities. You(and your doctor) need to have the data to see if changes need to be made. Card readers and software are available. The data will include AHI, leak, usage, pressure, etc. Some machines will show some of this info on the screen of the machine. I'm on the DIY program of xpap, so the more info I get the better. The doctor may or may not read the card, mine never has. Your insurance will most likely ask for the card to check compliance(usage).

Brenda

[RandyJ]

You can read these very useful blog posts by one of our members, Janknitz, before your husband goes to order his cpap machine:

http://tinyurl.com/2arffqx

http://tinyurl.com/2ck48rm

And yes, a machine that captures data is best! They don't offer a printout per se, but you download the data from the sd card to your computer, where you can print out reports if necessary, or just look at the data onscreen.

Here's a post by Rested Gal about machines that offer full data, and those that don't:

viewtopic.php?p=307168#p307168

Happy reading!

[robysue]

Yes, a full data machine is critical.

If hubby is very lucky, he'll take to CPAP like a duck to water AND his pressure level from the titration test will be both effective and comfortable enough to cause no problems sleeping.

Most of us aren't that lucky, however. There is a learning curve to sleeping with a six foot hose attached to your nose. And the learning curve is steeper for some than for others. Full data machines are critical for sorting out a whole bunch of potential pitfalls right at the beginning---pitfalls that must be solved if hubby is to be compliant with therapy for the long run. And these pitfalls run from things the user will be responsible for detecting and solving (mouth breathing? mask leaks? aerophagia? a touch of insomnia?) to problems that really need the doc to look at the data gathered and order suggested changes in the settings, or if you are very unlucky, the machine (AHI still too high? Centrals starting to emerge? severe aerophagia/insomnia?)

And even if the data is consistently good, hubby may feel pretty rotten during the time he's adjusting to the machine. And in that case, the good data can be a powerful motivator to keep on working at making CPAP work.

Before you meet with the equipment provider (known around here as the DME), be sure to read and re-read JanKnitz's blog What you need to know before you meet your DME. You might also find my Advice for those newly diagnosed with OSA

[VVV]

My husband has been diagnosed with Sleep Apnea and told that he must have a CPAP.

Yes. If necessary, fight like hell to get a machine with your own software so you can read the data yourself. If your husband has a bad night he will want to look at his data the next day to see if anything went wrong with his therapy that night. You don't want to find out six weeks later from a clinic.

My machine is quite old (but I have software) and I will let other members tell you about the best current models.

Don't let them stick you with a "brick". Before your husband picks up the machine and walks away from the counter he should be 100% certain he has the right model machine. Some of the suppliers will intentionally mislead you.

[JointPain]

Hi Elvira and welcome to the forum. Yes, it can be very overwhelming at first, but you're doing the right thing doing research up front.

You definitely want a CPAP machine that records full efficacy data. (Machines that don't we call bricks.) Most bricks record compliance data, which lets the insurance companies know if you're using the machine and thus whether they should pay for it. This doesn't help you and your doctor determine if the therapy is actually successfully preventing your apneas. Unfortunately, many DMEs (equipment providers) will try to give you a brick because it's very slightly cheaper for them (and they don't pass the savings on to you). Also unfortunately, the names of the bricks and the similar machine that records efficacy data are confusingly similar. The following blog entry by one of our regulars JanKnitz http://maskarrayed.wordpress.com/ lists the machines with efficacy data and those without.

The machine doesn't directly produce a printout. It stores the data on a small digital memory card. Your doctor (and you) can then put the card in a computer and read it using special software to generate reports. From what I've read, many doctors won't look at the data closely, so it will be up to you. Unfortunately, many sleep specialists also believe you shouldn't do so for reasons I don't understand.

As well as getting a machine that records full efficacy data, you should try to get a machine called an APAP that can automatically adjust its pressure, within limits, based on your husband's breathing patterns. Such machines can also be used in a constant pressure mode (exactly like a traditional CPAP) so there's no disadvantage to getting an APAP. Some people do better in APAP mode, some in CPAP mode. The only way to even have the choice is to get an APAP machine.

Best wishes and let us know how it goes.

[Java Time]

Welcome Elvira,

I'm not sure how much investigating of machines you are wanting to do or if you are looking for a specific recommendation.

I'm sure there are lots of good machines out there. In looking at lots of lots of posts on this web site, it seems like two newer machines that are fairly popular and well liked are:

Resmed S9 AutoSet

OR

PRS1 - Respironics PR System 1 REMstar Auto CPAP Machine with A-Flex (PRS1).

I have the PRS1 and it seems to work well, I do not have experience with any other machine, so I would not feel comfortable saying the PRS1 is "better" than another machine, but it is pretty straightforward to use, the humidifier tank is easy to clean each week (top rack dishwasher safe according to my DME), has data capability and works with the free "sleepyhead" CPAP software so you can read your SD card.

I believe the "Resmed S9 AutoSet" also works with the sleepyhead software.

[Elvira]

Thank you all very much for the information that you have provided! I have spent the morning reading and saving the links.

Most definitely will have many more questions, but this has been a real start point.

Elvira

[So Well]

Resmed S9 AutoSet

OR

PRS1 - Respironics PR System 1 REMstar Auto CPAP Machine with A-Flex (PRS1).

These seem to still be the best machines from the top two manufacturers.

A. https://www.cpap.com/cpap-machine/resme ... chine.html

B. https://www.cpap.com/cpap-machine/respi ... -flex.html

You can get the manufacturers' info from those two links.

[sheep1234]

Hi Elvira, I've been on cpap since 10/09. Love it! Best thing I ever did for myself!

Anyway, I've never taken my card to the doctor and I don't have a program to read it. I just know by how I feel each day how my cpap therapy is going. I can tell I've had my mouth open by when I wake up and my throat is dry and sore from snoring because I somehow slept with my mouth open. I can tell it's going well by the fact that I don't wake up with headaches and that I don't fall asleep while watching tv.

So yes, I guess it would be best to monitor everything but it won't be the end of the world if he doesn't get the most awesome cpap machine ever.

Good luck to you both and ask as many questions as you like! We are all here to help in any way possible!!

[So Well]

So yes, I guess it would be best to monitor everything but it won't be the end of the world if he doesn't get the most awesome cpap machine ever.

True. But why not strive for excellence in this therapy which is so critical to our quality of life????

[robysue]

So yes, I guess it would be best to monitor everything but it won't be the end of the world if he doesn't get the most awesome cpap machine ever.

Sheep1234,

It's one thing to have the data and choose not to look at it because things are going well. You fall into this category: Your S9 Elite ii records full efficacy data. And you feel superb. So you don't bother looking at the data. That's your choice.

It's another can of worms all together to NOT have the data because you've been "given"---aka forced to buy---a brick that does not record any data. The worst situation a newbie can find themselves in is to HAVE serious problems adjusting to therapy and NOT HAVE any efficacy data for anybody---the user, the DME, and the doc---to look at to help address what's going wrong.

That's why so many of us on this board so strongly advocate for full efficacy data machines: We all hope the newbies will take to CPAP like ducks to water and not need the data. But we all know that for many newbies there will be some serious adjustment issues and data is needed to address those issues.

'Tis better to have the data and not need it than need the data and not have any way of obtaining it.

[mowdoc]

Hello Elvira,

You are getting some very good help with your question. I can only add my $.02 and say to keep reading and learning. There is much to learn about sleep therepy.

I do want to pass some info that has not been mentioned yet but I think you should know. I was 59 and married to my wife right at 42 years when I started CPAP. I found myself hiding from her when wearing my mask!! We have never kept secrets or been "shy" with eachother but I just could not let her see me in this thing. After a few days of this she noticed and took control by asking me if she could try the mask on. Then she wanted to feel the pressure and had me turn it on. We had a great moment together and even took some pics. My point is that you should watch hubby closely and "help" him with the new life style as he may have issues like I did. All this even surprised me and I did not know how to react. My wife came to the rescue on CPAP.

Your hubby does not yet know how lucky he is to have a wife that wants to be involved with his care. Good for you and GREAT for him!!! He is going to need a lot of support in the beginning to deal with all the changes. After all, , , we are only "guys"!!!

Some people get results right away with CPAP but most do not. It can take a long time before he actually feels better. I still don't after 10 weeks. I keep waiting for a good night's rest though and I know it will come. All these forum members can't be wrong, right?? Hang in there and Good Luck!!

[TalonNYC]

Also, have Hubby check out the forums now and again. Having you involved in his therapy is WONDERFUL! However, he needs to be engaged and participating too =)

Both of you should take it slowly, and remember it's not a race. He's probably been snoring for years, so it may take a little time to recover from that.

Just keep reminding him (and yourself) that it DOES get easier over time. His body will get used to having the mask on just like it's already used to pajamas, sheets, the mattress, etc. He'll find the right pressure, the right humidity and the right mask for him over time, and through quite a bit of trial and error. You'll get tips and tricks on how to deal with exhaust air, bad nights and the hose being in the bed with you that will make all those problems either go away or become quite livable.

Never give up, even if you can't run the whole marathon, you can still finish by walking - it takes longer, but you get to that finish line either way =)