Nervous Newbie

[birder]

Sleep test results are in. RDI 22. Pressure 7. CPAP machine required.
Should I go for a "fixed" or an "auto"?
Do I need this machine for some time till I lose some weight or is this going to be a lifelong affair?
Resmed or Remstar or FisherPaykel or any other....?
Will I be able to sleep with a mask on my face...?
How will my partner react to this...?
I am on medication for severe lung disease (ILD-NSIP). Would this machine help?
Why me..lord...why me..?
I am so scared... will this hurt... would the mask lead to callous or skin rupture/tenderness?
Why humidifier... would I have to pour water in the machine at night?
What if I toss & turn in my sleep? Would I get entangled in the tubing? Would the mask come off? What would happen then?
I might involuntarily snatch the mask off in my sleep? Would the machine continue to run for the rest of the night?
Is there any, repeat any danger of electric shock?
I am going to place this on my bedside table. But when I fumble in the dark (as I frequently do (for radio/alarm clock), I might disturb the settings accidentally? Could this happen?
So many questions... I am thinking about this all the time...

[sleepnationtv]

Hi,

Here is a resource that you may find useful. We have a video blog that may be able to answer some of your questions.
http://www.sleepnation.tv

[KatieW]

Welcome to the forum. My advice is to educate yourself, to take away the fear of the unknown. Here is a place to start:

wiki/index.php/CPAP_Newbie

[kteague]

Welcome Nervous Newbie. Hopefully those nerves will be calmed down soon, once you get settled in to treatment. About the machine, get what you can get for your money. At a pressure of 7, I don't know that getting an auto will be a big enough issue for you to worry about, but even if you get a fixed pressure cpap, just be sure it reports treatment data. That would be the dealbreaker for me.

It is too soon to predict if you'll need the machine forever or if losing weight will make a difference. Your energies (and nerves) would be better off focusing on just those things immediate and required so as to not make this seem so overwhelming. Short answer - no one knows.

All the particulars of machine and mask usage will become clearer as you begin your adventure. Every concern you've raised has work-arounds - if you should happen to need them. If one mask doesn't work out, there are many others. There are accessories designed for comfort and ease of use. There are settings to prevent the machine running endlessly if you take your mask off, and hose management tips galore here on this board.

I think the bigger question is about your present lung issues, and if that is a consideration in selecting a type of machine. Maybe someone with knowledge of that subject will address that.

Welcome to the world of cpap. It really isn't such a bad place to be.

[cflame1]

Sleep test results are in. RDI 22. Pressure 7. CPAP machine required.
Should I go for a "fixed" or an "auto"?
Do I need this machine for some time till I lose some weight or is this going to be a lifelong affair?
Resmed or Remstar or FisherPaykel or any other....?
Will I be able to sleep with a mask on my face...?
How will my partner react to this...?
I am on medication for severe lung disease (ILD-NSIP). Would this machine help?
Why me..lord...why me..?
I am so scared... will this hurt... would the mask lead to callous or skin rupture/tenderness?
Why humidifier... would I have to pour water in the machine at night?
What if I toss & turn in my sleep? Would I get entangled in the tubing? Would the mask come off? What would happen then?
I might involuntarily snatch the mask off in my sleep? Would the machine continue to run for the rest of the night?
Is there any, repeat any danger of electric shock?
I am going to place this on my bedside table. But when I fumble in the dark (as I frequently do (for radio/alarm clock), I might disturb the settings accidentally? Could this happen?
So many questions... I am thinking about this all the time...

Let me try to answer some of these (keep in mind that you'll know more than most of us about your own illness)

I'd recommend auto if at all possible, as it will give you flexibility. You'll also want to make sure that you interview your DME (equipment supplier) in order to find one that's willing to work with you. The little that I saw on the net about your illness said that it could progress.

Chances are that it's a life long affair. Potentially stemming from your lung problems (I'm no doctor though).

It'll be important for you to have full data, which will include AHI and leak data.

Will you be able to sleep with a mask on your face.... it's all about your attitude and whether you choose to. It takes time and persistence and the will to want to.

How will your partner react to this... if they truly love you, give them a chance, let them get used to it.

You can get masks that float on your face... and ones that are as minimal as an oxygen cannula. They should never have to hurt. There's always plenty of different styles and masks to choose from until you find one that suits you.

Humidifier... if your home is dry... it's kind of like having dry air blown on your face and into your sinuses all night... kind of a comfort thing. It gets set at a level that's comfortable for you. I put water in mine every 3 to 4 days.

For tossing and turning... look up hose management. There are ways to hang your hose so that you won't get tangled up in it.

Fumbling around in the dark... well these machines are generally setup so that you have to know a specific set of keystrokes in order to reset the machine... so the worst that I could see that you could do with it is to shut it off in the middle of the night, which if you do... then just start it up again (usually they're setup that all you have to do is to breathe into the mask with it connected and it'll restart).

Hopefully some of these help.

[rosiefrosie]

Sleep test results are in. RDI 22. Pressure 7. CPAP machine required.
Should I go for a "fixed" or an "auto"?
Do I need this machine for some time till I lose some weight or is this going to be a lifelong affair?
Resmed or Remstar or FisherPaykel or any other....?
Will I be able to sleep with a mask on my face...?
How will my partner react to this...?
I am on medication for severe lung disease (ILD-NSIP). Would this machine help?
Why me..lord...why me..?
I am so scared... will this hurt... would the mask lead to callous or skin rupture/tenderness?
Why humidifier... would I have to pour water in the machine at night?
What if I toss & turn in my sleep? Would I get entangled in the tubing? Would the mask come off? What would happen then?
I might involuntarily snatch the mask off in my sleep? Would the machine continue to run for the rest of the night?
Is there any, repeat any danger of electric shock?
I am going to place this on my bedside table. But when I fumble in the dark (as I frequently do (for radio/alarm clock), I might disturb the settings accidentally? Could this happen?
So many questions... I am thinking about this all the time...

If it were me I would get an auto.
Most likely it will be a life long affair
Everyone differs on the models they like. I have a ResMed and like it, but I have never tried others.
Yes , will be able to sleep with a mask. We all do. It may take some time to find the right one and get use to it.
Depends on your partner.
You would need to talk with your doctor about your medications and cpap therapy.
I think we are all think why me at first. It's OK, this forum has so much helpful informations that will help you with your therapy, just ask.
It should not hurt. it may take sometime finding the right mask, there are many out there and everyone has their favorite. Will you need a full face mask or nasal masks?
A humidifier helps keep your nasal passages from drying out. You would have to pour distilled water into the humidifier chamber.
You shouldn't get tangled up in the hose. There are things you can do to help manage the hose and you can buy hose management systems. If your mask comes off, you just put it back on.
Allot of us take our masks off in our sleep when we first started treatment and found that if we persist and when we become "one" with our mask this stopped.
I don't think there is a danger of electric shock, unless you were to do something weird to your machine that would cause electric shock.
You may want to put it someplace else and lower than your bed as this will help with moisture problems in the hose. I keep mine on the floor, some keep theirs in a bedside table drawer or have a lower stool/table to set it on. I wouldn't think you would be able to disturb your settings, unless you sit up, turn on the light and change them. You might turn it off.
You will be thinking about it Allot at first and then everything will fall in place and you will become like most of us here, we can't sleep without it. It will take some getting use to and it will depend on you and your attitude for how long it will take, Some of us have no problems and take to cpap therapy right away and other struggle for awhile before things fall in place. Again this forum will answer your questions, give you hints and suggestions to help make your treatment work, all you need to do is ask.
Good luck, stick around and learn all that you can, because the more informed you are the better choices you will make,
Welcome to the forum!

rosie

[robysue]

Sleep test results are in. RDI 22. Pressure 7. CPAP machine required.
Should I go for a "fixed" or an "auto"?

Most critical thing is to get a machine that has full efficacy data---not just compliance data. Auto is nice since they can be set to run in regular CPAP mode, but a CPAP can't be set to APAP mode. So if you ever need an auto-titration, the APAP lets you do that without getting a loaner machine.

Do I need this machine for some time till I lose some weight or is this going to be a lifelong affair?

Most likely it's a lifelong affair.

Resmed or Remstar or FisherPaykel or any other....?

If you can get the DME to let you try one of each brand, so much the better.

But the key things to remember are:

With the Resmed you want the S9 AutoSet or the S9 Elite. Do NOT accept anything with the wor Escape in its name. Do NOT accept an S9 Escape or and S9 Auto Escape since they only recored compliance data.

With the Remstar you want the PR Remstar System One Pro or the PR Remstar System One Auto. Do NOT accept anything simply labled Remstar Plus or Remstar System One Plus since the Plus only records compliance data.

With the Fisher&Paykel you want the Icon Auto or the Icon Premo. Do NOT accept the Icon Novo since it only records compliance data

The Resmed S9 Elite and AutoSet have the best efficacy data available from the machine itself. But the the PR System One Pro and Auto and the F&P Icon Premo and Auto are also nice machines. Software designed for patients to use to monitor their data is available for the PR machines from cpap.com, our host here at cpaptalk.

Will I be able to sleep with a mask on my face...?

Eventually you'll be able to---if you make the decision to sleep with the mask. It takes some work. And patience. And perseverance. But the alternative is untreated apnea and the consequences of untreated apnea are quite serious.

How will my partner react to this...?

Remind your partner you need this machine to live a long, healthy, productive life. Or as healthy as you can be given that you say:

I am on medication for severe lung disease (ILD-NSIP). Would this machine help?

That's for your doctor to tell you.

Why me..lord...why me..?

I ask myself this question daily. I'm sure others do too. If you hang around long enough, you find there are always others who have bigger problems than yours. And you start saying prayers for them and focusing a bit less on yourself ---in time.

I am so scared... will this hurt... would the mask lead to callous or skin rupture/tenderness?

The mask should not need to be tight enough to hurt. Although to be honest, there are folks who do have problems with pressure sores, skin rashes, and the like caused by the mask they're using. And they regularly post here. And they regularly get good ideas on how to deal with problem so that it doesn't get worse and the sores and rashes and whatnot can heal.

And being scared at the start? I think that's pretty normal. It's a pretty big change. And all too often the doc that delivers the diagnosis doesn't really understand what it is like to actually use a CPAP machine from a patient's point of view. And many DMEs don't either.

Why humidifier... would I have to pour water in the machine at night?

The purpose of the humidifier is to keep your nasal passages and sinuses much more comfortable so they don't dry out at night. Some folks don't actually need much humidification. Others like their nose to be attached to a nice wet, warm air source. It's your choice---what feels best for your nose and your mouth and your throat.

The water goes into a small tub that is inserted into the machine. You fill the tank before you go to bed. It will easily last most people all night. A tank of water will last some people for several nights. Then the question becomes when do you dump the distilled water, clean the tank, and fill it with fresh water.

What if I toss & turn in my sleep? Would I get entangled in the tubing? Would the mask come off? What would happen then?

Lots of people toss and turn. Some people (including me) find that they toss and turn LESS on CPAP than they did before CPAP---without the apneas, I simply don't feel as restless at night---once I get to sleep.

Yes, sometimes I get tangled in the tubing. There's no real problem. It's not going to strangle you. If getting tangled is a real bother or a real worry, there are hose management systems that hang the hose over your head anchored on the wall or headboard making it much less likely that you'll get tangled up.

If you pull the mask off when you're learning to use the machine---it's no big deal. If the machine has been set up to turn itself off, it will after a few minutes. If it hasn't been set to turn itself off, it will keep running and blowing air through the mask (and probably registering a VERY LARGE LEAK in the data). Eventually the noise and the breeze might wake you up and then (if you're smart) you simply put the mask back on and go back to sleep. No big deal.

I might involuntarily snatch the mask off in my sleep? Would the machine continue to run for the rest of the night?

Lots of folks do involuntarily snatch the mask off in their sleep when they are learning to use the machine. It's no big deal. Again If the machine has been set up to turn itself off, it will after a few minutes. If it hasn't been set to turn itself off, it will keep running and blowing air through the mask (and probably registering a VERY LARGE LEAK in the data). Eventually the noise and the breeze might wake you up and then (if you're smart) you simply put the mask back on and go back to sleep. No big deal.

Is there any, repeat any danger of electric shock?

Under normal operating conditions, there's no real danger of an electric shock.

Now if you dump a bunch of water in your bed and then climb in the bed and pull the machine (not just the hose, but the whole machine itself), and the machine's power cord and converter block into the wet puddle in your bed, then you might get shocked. Likewise, you don't want to use the machine if you're in the bathtub taking a bath. But think about it. These are ridiculous scenarios.

I am going to place this on my bedside table. But when I fumble in the dark (as I frequently do (for radio/alarm clock), I might disturb the settings accidentally? Could this happen?

You won't be able to disturb the settings accidentally---they are protected via a clinician's menu that requires a special key sequence to be punched for a sufficiently long period of time.

The bigger danger is that you'll pull or push the CPAP machine off the night stand and it will fall and then be damaged. If you frequently find yourself fumbling for you alarm clock in the dark and your nightstand is small, then you will need to think carefully about the home for the CPAP. Is there room for a nightstand on the OTHER side of the bed to maybe move the alarm clock too? Is there room for a small lamp on the current table so that you could turn the light on instead of fumbling in the dark? Could you hang a small wall light near your headboard and turn that on to provide light so that you don't fumble around in the dark?

So many questions... I am thinking about this all the time...

It's good that you're thinking about this NOW. Think, read, post your questions here. Read the responses and think about them. Do more reading.

And some unsolicited advice: Now is the time to start looking for your DME (durable medical equipment provider). You want to ask lots of questions of potential DMEs---most notably what is the MAKE and MODEL NAME of the CPAP machine the DME is most likely to try to "give" you.. Remember---the DME is NOT "giving" you the CPAP: You and your insurance company are renting or buying the CPAP machine. And there's lots and lots of advice posted here about how to deal with DMEs.

[Pugsy]

I am so scared... will this hurt... would the mask lead to callous or skin rupture/tenderness?
Why humidifier... would I have to pour water in the machine at night?
What if I toss & turn in my sleep? Would I get entangled in the tubing? Would the mask come off? What would happen then?
I might involuntarily snatch the mask off in my sleep? Would the machine continue to run for the rest of the night?
Is there any, repeat any danger of electric shock?
I am going to place this on my bedside table. But when I fumble in the dark (as I frequently do (for radio/alarm clock), I might disturb the settings accidentally? Could this happen?

I'll take these questions as I see some of the others have been addressed.
It won't hurt significantly. Most pain or discomfort is because the mask used is simply too tight. No callous. No skin rupture again unless the mask used is too tight and digs into the skin. Kinda depends on the type of mask used. The bridge of the nose is thin skinned and if mask is too tight it can dig in and cause abrasions.
Humidifier? For most people adding moisture to the air is more comfortable. The nasal cavity and/or sinuses doesn't dry out so much. Yes, water has to be added to a special tank in the machine. How often depends on how much is used. Some people have to add water every night (I do), others get by on less and can go 2 or 3 nights.
Toss and turn? Yep you will. Yep there will be times when the hose seems to get tangled up but it is not a huge deal. Sometimes the mask gets dislodged at little, sometimes it comes off. We simply put it back on. There are some gadgets that help with hose management should it be a major problem.
Most machines come with a little feature that detects (after just a bit of time) that the mask is off because it registers as a large leak and they will shut off by themselves.
Minimal danger of electric shock. I would think no more than any other item that is plugged in next to the bed.
If you fumble in the dark there is very little that would be affected because the major settings are not really easily stumbled upon. It will depend on what functions are on the outside of the unit that you might touch.
The biggest concern I have ever had about fumbling in the dark relates to actually knocking the machine off and having the humidifier (with water in it) spill all over the insides of the machine. Obviously this can harm the machine.
After nearly 2 years I never pulled the machine off but I came close a few times.

Good luck. It eventually will become almost second nature and you will look back on this post and laugh. Takes a while to sort through all this stuff though so try to be patient.

[Big S]

Welcome Birder! I'm glad you found this site early. It is full of hope, empathy, suggestions, answers, humor and even love for each other as we make our way along this journey. Take a the steps you need to make, accept the kindness everyone here shares and get used to regular visits with the cyber-menagerie of characters you are sure to find.

[dave01978]

Hey welcome, Looks like most of the bases have been covered, I've been at this for just over a month, probably the best thing I did. And my wife is much happier too.

Just have a positive outlook on it, and I bet you will be fine, when any problems pop up, they are usually solved quickly by people on here.

Dave

[birder]

Thanks all. Thanks a lot for your help. My eyes moistened up as I read some of the replies, I am fortunate to join a group of concerned individuals. May the lord bless you all.

Thanks KatieW for your link. I read all the pages and am much better informed now.
Pugsy said that I would "look back on this post and laugh". Reduced my nervousness considerably. Thanks pugsy.
Thanks Robysue. Your electric shock scenario was extreme. Not worried on that score any more.
Rosiefrosie and cflame1 have suggested an "auto". Shall discuss this with my doctor too. Thanks.
Kteague deserves thanks for a very sensible reply which I read again and again.
Is that a Pina Colada, Big S?
Sleepnationtv, I am having some problem watching the videos (they would'nt download properly". Shall try again.

Thanks all, once again.

[Big S]

Ahhhh, the simple pleasures, pina colada with coconut shrimp and a squeeze of lime.....In Honolulu, no less

[aahorncole]

Thanks Katie i know that i'm replying such an old post, but still it helped me out a lot. I don't know if it calmed me down, because my brother has this, and he's the one i'm inquiring for, but at least now i'm more knowledgeable on the subject.

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