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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
pcathcart
 
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New user, saying hello...with some questions...

Postby pcathcart on Fri Oct 24, 2008 7:17 am

Just wanted to get off on the right foot and say hello to everybody. I have a couple of questions and would politely ask you take it easy on a new guy...

I have recently been diagnosed with sleep apnea and last night was my first night ever with a CPAP machine. I don't even have my own yet (I was in the doctor's office last night). I found this board this morning and after reading a bunch of posts, I registered. Actually, I was a bit worried about some panic/anxiety issues i had in the middle of the night last night, but reading some posts here has made me feel better about it. Thank you.

I have been reading all morning, and have learned that I have a lot to learn.

Now for the actual questions. I meet with my doctor on Monday morning and will discuss the CPAP/mask options then. I now understand that there are more options than i can handle, and I am not asking for specific suggestions, just some questions that I should ask or things that I should look for, that someone who has gone through this could point out...

Also, what else do I need? I know I need the CPAP/humidifier and mask, but i have read posts about cards and readers and software and pillows and stands and other things that I am just not sure about at this point. I just need a bit of help as I feel like I have just entered a quagmire...

Well, thank you in advance and I am sure all of this has been gone over many times before but I do appreciate your time and effort...

Phil

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eutychus
 
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Re: New user, saying hello...with some questions...

Postby eutychus on Fri Oct 24, 2008 7:33 am

Welcome Phil,

I'm new too (1 week into this thing). Here's a couple of things you'll want to consider...

You definately want a data capable machine. Some will only provide complience data (so big brother knows if you're worth paying for). You want one that comes with a smart card (or whatever the particular brand calls it); one that records leak rate, apneas, hypoapneas, snoring, etc. Then you'll want to buy a card reader and software so you can view your own data (daily, weekly, etc.). This way, you can track your progress and tweak your therapy if/when needed. This forum is a great place to get help with that. Your doc may or may not like this - too bad, it's your health, not his/hers.

I see a lot of people here have an auto cpap machine (a.k.a. APAP / Auto CPAP). These will allow you to do much of the same stuff that was done at your sleep study and titration. I have a straight CPAP machine, but already sort of wish I had an APAP (autos can also be set to run straight CPAP, so the best of both worlds).

You'll probably get a script for the same mask that you tested on. So far, I like my nasal mask (see below), but I intend on trying a full face soon since I tend to mouth breath when I'm in REM sleep and I'd rather not wear a chin strap. You can also try nasal pillows (this eleviates the use of a mask). Someone else would have to tell you more about those.

You're starting out right - get educated throught this forum. Your doctor will either be impressed by your knowledge on Monday, or feel insecure and not needed anymore. I'm amazed at the people I know who've been cpap'ing it for years and don't really know anything about their treatment.

I''m finding that attitude goes a long way with this also. Make it a positive experience. Enjoy your new sleeping pal. Give it a name if you have to. Here's to your success!

Mike

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Additional Comments: I also use a FlexiFit HC407 Nasal Mask
"Seated in a window was a young man named Eutychus, who was sinking into a deep sleep as Paul talked on and on. When he was sound asleep, he fell to the ground from the third story and was picked up dead." (Acts 20:9)

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Re: New user, saying hello...with some questions...

Postby DreamStalker on Fri Oct 24, 2008 7:36 am

Welcome Phil.

First ... make certain that you get an original copy of your Rx ... it puts you in the driver's seat when it comes to selecting options for your equipment.

Get a copy of the PSG lab study report ... the "full" report, not just the summary. You will need this to get a full understanding of your condition.

Finally, and most importantly ... realize that taking control of your therapy is the quickest path to success. You need to monitor and manage your treatment just like a diabetic ... NOT depend on the health professionals as they may (and often do) let you down when it comes to the treatment. They are good at diagnosis but not so for treatment.

You are already off to a good start by finding your way to this forum ... good luck.
Thanks Snoredog, GoofyUT, rested gal, GoofProof, Wulfman, NightHawkeye, snoregirl and all of the others.
From 102 AHI to 0.4 AHI for over 10 yrs now :)
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Re: New user, saying hello...with some questions...

Postby nomoore on Fri Oct 24, 2008 7:48 am

It sounds like you have the basics. All you NEED is the machine, humidifier, and mask. Make sure to DEMAND you get a FULLY DATA CAPABLE machine. Try to get an AUTO machine. If you can't then settle for ONLY a FULLY DATA CAPABLE machine. This is about all that your insurance will pay for.

The card reader and software will be something you would pay for out of pocket if you get it. If you have any hiccups in your treatment process you will probably want the card reader and software. You need the FULLY DATA CAPABLE machine though to be able to use the card reader and software.

Some people who sleep on their side prefer the special pillow that kinda makes room for the mask on your face. Some people prefer to have the hose routed above their head and will devise some sort of hose hanger. My hose hanger consists of a hook on the wall (I really need to get a headboard) and a scrunchie. Some people prefer the hose routed under the covers. They sometimes want a hose cover so it feels more comfy against their skin. Some people have issues with rainout (condensation) in their hose and will use a hose cover or heated hose to help prevent it. Look into raising the temp in your room or lowering your humidifier setting before you spend the money on that though.

Oh, did I mention? Don't settle for anything less than a "FULLY DATA CAPABLE" machine.

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Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Titrated Pressure = 8, Min = 11.5, Max = 20

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Georgio
 
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Re: New user, saying hello...with some questions...

Postby Georgio on Fri Oct 24, 2008 7:50 am

Good Morning & Welcome Aboard,

I arrived here about 2 months ago just like you. I got a lot of help and now feel a big improvement.

I'm sure there are many here who would describe their first night in the sleep lab with some panic or anxiety, that now call their cpap one of their best friends.

Keep reading here. The more you know the faster and better your cpap therapy will work. Be sure to read all the "testimony" of those as they conquer adjustment to cpap and are noticing how much better they feel. My daughter told me yesterday, "I forgot how blue your eyes are"? I attribute that to cpap.

Machine: Get an "auto" if at all possible. They are more comfortable to breathe on and have the ability to adjust pressures during the night according to your needs. As a minimum, be sure your machine is "fully data capable", (not just compliance data), so you can monitor your data.

Mask: This is a highly individual thing to get what fits, is comfortable and doesn't leak. I started with a Gel nasal mask that hurt my nose. Now I have an Opus 360 nasal pillow mask that works pretty well. You may have to experiment with masks. I have it hooked up to a hose hanger over my bed so the hose goes straight up and doesn't get wrapped around me in bed.

Software, Data Card: You want these for the machine you get. I have been checking my data every morning to check for mask leaks, and see that my cpap therapy is working properly. It is a big benefit seeing your nightly data.

Order some "PurSleep" free samples off this site. The scents will help make the experience staring out more pleasant.

Good luck, and there are a lot of kind and very knowledgeable folks here that want to help.

Georgio
M-Series W/Aflex, Swift LT, Encoreviewer

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carbonman
 
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Re: New user, saying hello...with some questions...

Postby carbonman on Fri Oct 24, 2008 8:06 am

pcathcart wrote: I just need a bit of help as I feel like I have just entered a quagmire...Phil


Phil, actually you have found the path that will take you
OUT of the quagmire.

Life as you know it is about to change....for the better.

You already are getting good suggestions and help.

My suggestions:
Be patient and kind to YOURSELF.
Become your own best therapist.
There is much to learn.....take it as it comes.
Everyone here has been where you are at.....you are not alone.
If something in your therapy process is not working,
find something that does work, ASAP.
Many, many options......just ask....here.
Never let anything prevent you from making those changes, ASAP.

It's your life.
It's my life.

All the best, it's a journey.
"If your therapy is improving your health but you're not doing anything
to see or feel those changes, you'll never know what you're capable of."
I said that.

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sleepydoll
 
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Re: New user, saying hello...with some questions...

Postby sleepydoll on Fri Oct 24, 2008 8:24 am

My best to you ! :D
Welcome to this great forum.
Don't forget to check out the yelloe lightbulb "Our Collective Wisdom"
It contains so many topics that can help you out quite a bit in your search of aswers, such as:
Sleep Apnea Awareness
Visiting The Sleep Lab
Visiting Your Doctor
Get Started Treating Sleep Apnea
Selecting Your Obstructive Sleep Apnea Treatment
Selecting Where To Purchase Your CPAP Equipment
Selecting Your CPAP Equipment
Common Equipment Problems
Help For New or Struggling CPAP Users
CPAP Safety, Warnings and Pitfalls
Travel With CPAP
Work Life and Legislation Concerning Sleep Apnea
Sleep Apnea Activism and Patient Education
CPAP Humor and Quotes
Forum Tips


Feel free to ask this forum for further specifics!
Keep us posted on how you're doing!
D. :wink:

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Re: New user, saying hello...with some questions...

Postby Pineapple on Fri Oct 24, 2008 8:31 am

Good Morning pcathcart and welcome.

Anxiety attacks and "ripping the mask off" are normal in the first couple weeks. Mine went away by itself (OK my husband would swat me every time I took it off and say "the therapy can't work if you don't have the mask on"). One of the best suggestions I've heard for getting used to the mask is to simply wear it while your watching TV or something. Just keep working on increaseing you time with the mask on. If it's still a problem in a week post a specific question on it and many who have had the problem will jump in with suggestions.

I can't stress more the need for a fully data capable machine - if your therapy takes a turn for the worst, the data on your machine will help pinpoint what is wrong. Don't be fooled by the fact that the machine has a "smart card". The M-series Plus has a smart card but all it records is compliance data. Do not accept anything that says "Plus" on it.

Your mask is the most important part of your theraphy (next to your attitude). Talk to your DME about thier return policy. Most DME have a 30 day guarentee - if the mask doesn't work for you, trade in for another. Try all the mask they have available at the DME before you take one home (perferably lying down - they fit differtently when you lie down) If after a week you still are uncomfortable with it try another one.

Good Luck.

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Re: New user, saying hello...with some questions...

Postby DreamStalker on Fri Oct 24, 2008 8:43 am

Actually ... you may be better off avoiding the DME altogether. Call your insurance and see if they will accept out-of-network reimbursement for online purchases of your medical equipment ... that would be your best deal for purchasing your equipment.
Thanks Snoredog, GoofyUT, rested gal, GoofProof, Wulfman, NightHawkeye, snoregirl and all of the others.
From 102 AHI to 0.4 AHI for over 10 yrs now :)
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pcathcart
 
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Re: New user, saying hello...with some questions...

Postby pcathcart on Fri Oct 24, 2008 8:44 am

So I can do some research...what are some examples of machines that are fully data capable?

I am meeting with my doctor on Monday and the DME later next week...from what I understand I can get a copy of my reports and prescriptions and do not have to settle on anything from the DME...once I hear what they have to offer, I might just make that phone call to the insurance company to see if i can purchase online and get reimbursed...thanks for the idea DreamStalker...

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Re: New user, saying hello...with some questions...

Postby sleepydoll on Fri Oct 24, 2008 8:54 am

[quote="pcathcart"]So I can do some research...what are some examples of machines that are fully data capable? quote]


If you go to the cpap.com thread listed below, you'll see the different possibilities of software, depending on the type of machine you're getting. :roll:

https://www.cpap.com/cpap-faq/Software.html#FGID-56

D.
:wink:

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Re: New user, saying hello...with some questions...

Postby DoriC on Fri Oct 24, 2008 9:52 am

Welcome, I can't believe I'm now welcoming a newbie myself. You say "quagmire", I say "twilight zone". I'm not the patient, but had to educate myself real fast in order to help my dear hubby who's been in a fog after years of OSA(also in his senior years). It's been 2months now, and we're beginning to see the light finally. He's my hero. All I can say is USE THIS FORUM and you will be on your way. Everyone is beyond helpful and answers questions you didn't even know should be asked. I even use PMs when I'm a little shy to post what I think is a silly question. And best of all, nobody BITES! I found out quickly that the medical people in this area are sadly lacking in knowledge, interest, and can even give bad advice. So become your own advocate, it will empower you. Again, my thanks to everyone here.

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Re: New user, saying hello...with some questions...

Postby rested gal on Fri Oct 24, 2008 3:31 pm

pcathcart wrote:So I can do some research...what are some examples of machines that are fully data capable?


My list of machines that record "full data" (AHI and leak info) and those that don't -- updated October 2011.
The ones in bold blue record full data. The ones in red do not.
Some machines listed in blue (not bold) have a note about limitations that make them less desirable for people wanting full data.

Update Note: machines which hit the market in 2010 and 2011 that I'd absolutely reject even though they do record some data beyond "hours of use":
ResMed S8 Escape II Auto and ResMed S9 Escape Auto -- records AHI and 95th centile pressure only. Does not record any Leak data at all.
Philips Respironics System One REMstar Pro CPAP Machine with AutoIQ -- "this is not an Auto CPAP Machine. It functions as an Auto CPAP during Auto-Trial Phase and switches to CPAP mode during Auto-Check Phase." (from cpap.com's product description.)

____________________________

CPAP machines which record full data. Some of them allow display of AHI/Leak data in the LCD window of the machine. Some require using software for a data download to a computer in order to see data:
ResMed S9 Elite
ResMed S8 Elite II
ResMed S8 Elite
Philips Respironics System One REMstar Pro
Respironics REMstar Pro M series
Puritan Bennett GoodKnight 420S and 420SP
DeVilbiss IntelliPAP Standard Plus
Covidien/Puritan Bennett Sandman Info
(note: not to be confused with the model named "Intro" which does not provide full data.)
Fisher and Paykel Icon PREMO (note: difficult to find the software that would download full data from this F&P machine.)
Fisher and Paykel SleepStyle 244 (note: difficult to find the software that would download full data from this F&P machine.)

The older pre-M Respironics REMstar Pro 2 and S7 ResMed Elite also record full data, but DMEs are unlikely to be still giving out those. Note: "DME" stands for Durable Medical Equipment. On the message board we often use "DME" to mean a local home health care equipment store, or an employee who works for such a store.

AUTOPAP ("autotitrating cpap" or "APAP") machines which record full data. Some of them allow display of AHI/Leak data in the LCD window of the machine. Some require using software for a data download to a computer in order to see data:

ResMed S9 Autoset
ResMed S8 Autoset II
ResMed S8 Autoset
Philips Respironics System One REMstar Auto
Covidien/Puritan Bennett Sandman Auto
Respironics REMstar Auto M series -- with or without "A-Flex."
Puritan Bennett GoodKnight 420E
DeVilbiss IntelliPAP Autoadjust
Fisher & Paykel ICON Auto
Fisher & Paykel SleepStyle 254 Auto
(note: difficult to find the software that would download full data from F&P machines.)

These very old autopaps also record full data:
Respironics REMstar Auto (pre-M autos, with or without C-Flex)
Note: The pre-M Respironics machines (autopap and cpap) are often referred to on this message board as the "tank", "legacy", or "classic" models.
ResMed S7 AutoSet autopaps
ResMed S8 Autoset Vantage (older autopap that has "EPR" available only in CPAP mode, not in auto mode.)

______________________________________

BILEVEL ("bipap") machines which record full data. Some of them allow display of AHI/Leak data in the LCD window of the machine. Some require using software for a data download to a computer in order to see data:

Philips Respironics BiPAP Pro and BiPAP Auto
ResMed S8 and S9 VPAP (and ST-A models), VPAP Auto, VPAP Auto 25
Respironics BiPAP Auto with Bi-Flex M series
Philips Respironics System One BiPAP Auto with Bi-Flex
Covidien/Puritan Bennett Duo and Duo ST


These older bilevels also record full data:
Respironics BiPAP Pro 2 with Bi-Flex
ResMed S7 VPAP III (and ST-A models)


___________________________________________

The following machines do NOT record full data (like AHI, Leak info.) At most, they record only hours of use.... basic "compliance"...how many hours someone is using the machine. They can give perfectly good treatment, same as the "full data" ones listed above, but if it's detailed data about the treatment a person wants to see, these machines can't record or yield that kind of information even if they have a "card" stuck in them or a plug for cable downloading:

CPAP - compliance hours only:
Philips Respironics System One REMstar Plus
Respironics REMstar Plus M series, DS100, and "Sleep Easy"
ResMed S8 Escape and Compact
ResMed S8 Escape II
Fisher and Paykel ICON Novo
Fisher and Paykel Sleepstyle 242
DeVilbiss Standard
Puritan Bennett GoodKnight 420G
Covidien/Puritan Bennett Sandman Intro
(not to be confused with the model named "Info.")
PMI-Probasics ZZZ-PAP "Silent Traveler"
Somnotech SomnoCPAP
Aeiomed Everest 2
(no longer manufactured)
Viasys BreatheX and Orion
PureSom CPAP
Invacare "Polaris" cpaps


These older CPAP machines do NOT record full data. They record only hours of use.
Respironics REMstar Plus (pre-M)
REMstar Pro - pre-M and without a "2" in its name.
ResMed S7 Compact, Escape, and Lightweight

BILEVEL ("bipap"):

Puritan Bennett 425 -- does not record "full" data even though the product description says it uses Silverlining software (which it does.) A review on the product page of that machine states:
"My biggest disappointment was with the software. It provides very little data. For example, respiration rate is about it besides the compliance data."

The product reviews for the bundle (PB 425/humidifier/software) seem to have some reviews mixed in from purchasers of the 420E auto (which does give detailed data via Silverlining software), so be aware that reviews for the PB 425's "bundle" can inadvertently be misleading. The PB 425 bilevel machine does NOT provide the kind of "full data" other bilevel machines give.

Oct 05, 2005 subject: Silverlining 3.6
viewtopic.php?t=4968

__________________________

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

LinkC's conversation with his DME about data:
viewtopic.php?p=342111#p342111
__________________________


Den (Wulfman) posted a list of the model numbers for Respironics machines:
viewtopic.php?p=338351#p338351

Those numbers are on this Respironics page:
http://encore.respironics.com/type.aspx

This Respironics site also takes you to the model numbers after you start at the "Sleep Disorder Breathing" section and work your way to the machine you want to see, then click "Resources" (menu at right side on the machine page) - "Parts and accessories":
http://global.respironics.com/ProductGroups.asp#Sleep

viewtopic.php?p=340115#p340115
The post by jules in this topic shows pictures of an older Respironics machine and a smaller "M series" Respironics machine.
Message board members often refer to the older model as the "tank" or "legacy" model.

Update: Respironics was bought by Philips. The newest Respironics machines are called "Philips Respironics." The Philips Respironics System One machines are the first models that have come out under the new brand name.
____________

(My edits: updates adding new machines or info about the machines.)
Last edited by rested gal on Tue Oct 11, 2011 8:50 am, edited 36 times in total.
S9 VPAP Auto - S9 Auto - BiPAP Auto - 420E auto - Everest 2. ResScan, EncPro & SL3.
Humidifier: F&P HC 150, Aussie heated hose.
Mask: Aeiomed Headrest/homemade straps.
ALL LINKS by rested gal:
http://www.cpaptalk.com/viewtopic.php?t=17435

pcathcart
 
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Re: New user, saying hello...with some questions...

Postby pcathcart on Wed Oct 29, 2008 8:16 am

So to keep everyone up to date, because I am sure you are interested...

I met with my doctor on Monday and have been prescribed a cpap machine. I am going this afternoon to meet with the DME about my new ResMed S8 Elite II and get fitted for a mask. I spoke to the guy on the phone that will be showing me the machine for almost 20 minutes about different options, how the appointment will go and mask selection. I am hoping that it will be a good experience and he seemed very interested in getting me the best equipment to achieve the goal.

That being said, he resisted a bit when I discussed purchasing a card reader and software to track my therapy. He commented that most things for this type of therapy are "prescription only" and cautioned me greatly about not erasing any information from the card or the insurance company may not pay for it. Is there any truth to this and can I track my therapy without erasing data?

Anyway, I am very excited and can't wait to try it out and hopefully get a good night's sleep! Thanks for all the great information!

Phil

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Re: New user, saying hello...with some questions...

Postby pcathcart on Thu Oct 30, 2008 7:00 am

I am going to keep updating, because it feels good just to type it out...even if no one is listening...

Had a great appointment yesterday at the doctor's office, the sleep tech, contrary to what he said on the phone, was encouraging about me checking my results and told me that if I couldn't get a reader to just bring the card by whenever and he would print out a copy of the information. It was almost like he wanted me to know what was going on with my therapy!

During the appointment I tried on several masks and decided to go with the ResMed Mirage Swift LT. It was very comfortable and was totally non-intrusive. I got a lesson on how to use the machine and he programmed all of the settings for me (more on that below). I left the office excited and prepared for a restful night of sleep.

Once home, since it was early in the afternoon, I set the machine up in the living room and watched some tv with the mask on and the machine pumping. I was asleep in minutes and took a fantastic nap for about an hour. When I woke up rested, I was even more excited to go to bed last night.

Last night I put on my mask, turned on the machine and laid down to sleep. I had a good bit of trouble falling asleep as it took a bit of effort to exhale against the machine. I assume this is something I will have to get used to.

I only woke up once during the night, had a bit of trouble getting back to sleep, but did in 5 or 10 minutes and then woke up to my alarm clock, with 7 hours on the machine. I am pretty happy with this result, although i am a bit tired this morning. All in all, a good first night.

I do have one questions, for those who are still reading...the sleep tech said there was an "alarm" feature on the S8 Elite II that can be turned on or off to notify me if the mask has come off my face. I would like to activate this feature, but have found in the menu that many of the functions listed in the manual are just not available. Am I doing something wrong or did they block me from accessing those features? Any help would be appreciated...

Phil

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