Introduction from a Newbie

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
DreamOn
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Re: Introduction from a Newbie

Post by DreamOn » Wed Jul 28, 2010 10:04 am

Mask2sleep wrote:I'm supposed to find out my results today... is there anything specifically I should ask them when they call? Like any kind of stats on number of apneas, information about titration, & etc?.
It would be very helpful if you could get a copy of your sleep study results (both diagnostic and titration) and your prescription. Doctors often send the prescription to the DME directly, but you should request that too. You should ask about your AHI, pressure, etc., but there is often other information in the sleep studies that can help you understand your situation better, such as a high arousal index or excessive limb movements. It's also good to know if your apneas were obstructive (airway restriction) or "centrals" (brain not getting message to breathing muscles).
It seems like the Autoset S9 is very popular with folks here, when the time comes I will ask specifically for that one. I like the idea of tracking how it is going, and from the little I know the APAP feature seems like a good idea. Does that come with a humidifier too?
Your prescription will need to include "heated humidifier". That's pretty standard these days. The S9 uses the H5i humidifier, which fits right onto the machine. You can use several types of hoses. It should come with the SlimLine hose in the U.S. You can also purchase a heated hose for the S9, called the ClimateLine, which will help in the winter months especially. You can use a "regular" hose, as well. There's a special setting for that on the machine. You may want to consider getting a hose cover at some point if you're going to use a non-heated hose, as that will insulate the hose and minimize "rainout" (condensation inside the hose). A search on the forum will reveal more about that.
I'm not so concerned about the sound bothering me, but more of my wife. I suppose there are always ear plugs!
I definitely don't think the sound will bother your wife, but I suppose some people are more sensitive than others. If you find it is bothersome, you could try placing it on a mousepad and/or have the machine slightly lower than bed level. I don't hear mine at all when my head's on my pillow, and just barely when I'm sitting up. Truly, I would describe it as "whisper quiet."
I get the nasal masks and the full face, but just looking at them, the pillows seem fairly uncomfortable. Big prongs in the nose, and I guess you need a chin strap? I suppose I will want the best of both worlds, the best therapy possible plus the least amount of extra stuff needed besides the mask itself, like a chinstrap. I suppose part of that is vanity too. I have seen reference to a papcap - what is that? It looked almost like a dew rag.
The nasal pillows don't fit up into your nose. They go in just barely, and rest mostly on the outside. Many people do find that they need to use a chin strap to prevent mouth-leaking with nasal and nasal pillows masks. That works well for me. But for many people, that isn't enough to prevent the air leaks. Some people also need to tape their mouth, while others have to use a full face mask.

The PAPCap is a chin strap that is attached to a cap. This distributes the tension more evenly than the standard chin straps. The PAPCap is also made of cotton, which many of us find more comfortable. I've tried several chin straps, and that's the one that works best for me. It can be a bit warm in the summmertime. If I could find a full face mask that fit me well, I'd probably go that route, although the nasal pillows masks are very light and I like that there's less touching my face.

Here's the regular PAPCap (which comes in two sizes): https://www.cpap.com/productpage/pursle ... otton.html
And here is the "Plus 4" model, which comes with four straps that you can use instead of standard 4-point headgear with some masks: http://www.pur-sleep.com/products/produ ... category=6

I hope that you don't have any problems getting the machine you want. Let us know how you're doing.

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Mask2sleep
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Re: Introduction from a Newbie

Post by Mask2sleep » Wed Jul 28, 2010 12:11 pm

Hi there...

The Diagnostic center just called. I understood most of what they said, but if anyone could shed any additional light on this or translate into clearer terms, that would be great.

I was diagnosed with moderate sleep apnea. During the study I slept 301 minutes and had 86 apnea events, with most of them occuring during REM sleep. I was really surprised they said I slept 301 minutes because I swore I didn't sleep a wink. They also said that I snored, which was a big surprise as neither myself or my wife have ever heard me snore. I guess she is a deep sleeper! My oxygen level was around 90% most of the time. Not surprisingly, the sleep doctor recommends CPAP.

I go in on Monday August 2nd for my second sleep study for titration.

And so it beings I guess.
"I have not failed. I've just found 10,000 ways that don't work." - Thomas Edison

DreamOn
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Re: Introduction from a Newbie

Post by DreamOn » Wed Jul 28, 2010 1:31 pm

It is very common that we underestimate our total sleep time. You slept roughly 5 hours total (301 minutes divided by 60). You had 86 apnea events within that period of time. Now, AHI (apnea-hypopnea index) is the hourly average number of apneas + hypopneas (partial airway restriction). You probably had some hypopneas too, but didn't mention that. So, your AI (hourly average number of apneas) is 17.2 (86 apnea events divided by 5 hours). We don't know what your AHI is, since you didn't mention the total number of hypopneas, if any. AHI between 15 and 30 is generally considered to be "moderate sleep apnea."

The apneas cause our bodies to be deprived of oxygen, so that's why they measure the oxygen saturation level. You mentioned that your oxygen level was around 90% "most of the time." I'm not sure what that really means. That wouldn't be a good level to be at most of the night, I don't think. It's best to be in the high 90s. They may have meant that that was your lowest level during the night, I'm not sure. I believe that 88% is considered an important threshold. Oxygen saturation below 88% is debilitating to your entire body (brain, organs, etc.). The length of time one is desaturated below 88% is also important; a few seconds is different than many minutes.

I suggest that you obtain your complete sleep study report to get a better understanding of the situation. The report may give an overall average oxygen level for the entire night, as well as show what your lowest desaturation was.

Sleep well on Monday.

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Mask2sleep
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Re: Introduction from a Newbie

Post by Mask2sleep » Thu Jul 29, 2010 6:04 am

They didn't give me a whole lot of information on the phone, I will request a copy of the study results. Is that something they often charge for? They didn't say the AHI at all, just a generalization of "86 apneas". They did say it was moderate sleep apnea, though. They said that my saturation level was high 90s during the night, but during the apneas it was most of the time at the 90% mark.

Thanks for the info re: hoses, humidifiers, & etc. I will be sure to make a list of these items and make sure they are on the prescription.

I can only imagine being in a nasal mask with a chin strap and tape over my mouth. It sounds like in that situation one could be an extra in a kinky video.

With your Papcap, do you use the one with the attached 4 point harness? I wonder if that would work better than the harness that comes with the mask?

They said on Monday they will show me the different mask types and I can try each one on. They'll then hook me up to all the stuff and figure out which mask type works for my facial structure and the pressure I need. After all that, they'll put me in touch with DMEs to get the stuff. How long does it typically take to get the supplies?

Thanks for the help.
"I have not failed. I've just found 10,000 ways that don't work." - Thomas Edison

DreamOn
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Re: Introduction from a Newbie

Post by DreamOn » Thu Jul 29, 2010 10:32 am

Mask2sleep wrote:I can only imagine being in a nasal mask with a chin strap and tape over my mouth. It sounds like in that situation one could be an extra in a kinky video.
I'm sure that's been done!

That makes sense about your oxygen saturation levels. It sounds like it was normal when you weren't having apneas, and went down during apneas. That is what happens. The apneas literally starve our bodies of oxygen during that period when we're not breathing, which can lead to the complications of untreated sleep apnea, such as high blood pressure, heart problems, diabetes, cognitive difficulties, nighttime urination, etc. That's why it's so important to treat it.

I'm not sure whether they'd charge you for copies or not. I don't think that most places charge for that. It is a part of your medical records, so you're entitled to it. It's well worth obtaining! And, while you're at it, get a copy of your machine and mask prescriptions. You may need them, sooner or later. Depending on insurance, etc., many of us purchase supplies online, from places like https://www.cpap.com or their associated auction site, http://www.cpapauction.com. If you decide to do that, you will need a prescription for machines and masks.

I do have the PAPCap Plus myself -- the one with four straps to hold the mask. The masks I use most often don't have four-point connections, so I can't use the straps with those. I do use them when I wear my Activa LT nasal mask and several others, and the PAPCap straps works perfectly.

When you go to your titration study, definitely take advantage of the opportunity to try on as many different masks as possible. I tried on six during my study, in several sizes. Only one of those worked well for me. You will see from reading posts here that the mask is often the most challenging part of this therapy. So, if you can determine the style that works best for you, and (even more important) the correct size, then you're ahead of the game.

As far as how long it takes to get your equipment, that varies depending on the arrangement between the lab, doctor and DME (Durable Medical Equipment provider). The sleep study will need to be interpreted, which could be the same day or longer. My lab, doctor and DME were all the same company. In my case, I didn't meet with the sleep doctor before my studies. I met with him a week after the titration study, and I got my equipment that day. But some people get their equipment right away, while others have to wait weeks. And some never meet with a doctor. You could always call before your study and ask what you can expect in that regard.

Sleep well!

brazospearl
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Re: Introduction from a Newbie

Post by brazospearl » Thu Jul 29, 2010 5:31 pm

Mask2sleep, the noise probably won't be a problem for your wife. Years ago the machines were noisy, but technology's come a long way. You're smart to realize you need a fully data-capable autotitrating machine. The auto is a nice feature, but many users prefer straight cpap; as long as you're buying, why not have both as an auto can run in cpap mode. This is why they are coded under the same number on your insurance. This also means that the insurance folks don't care whether your machine is auto or not, despite what some DMEs would have you believe. Get paper copies of all your sleep study data AND your prescription--you're entitled to this by law. Some offices require payment, a "copying fee," but many do not. Looking on the insurance website won't tell you what you need to know, such as how much they cover for a machine, if they require a rental plan, etc. Call 'em up, and good luck. Once you have information from them, do the math yourself; often there is less money out of your pocket to buy online than from a brick-and-mortar DME. Don't just assume that if they pay, say, 80% that's gonna be less out of pocket than your paying 100% online. Seriously, run the numbers. On the other hand, some local DMEs are great and do wonderful work for their clients, so check around and find out the best deal for you. About masks, have you looked at the Hybrid? It has small nasal pillows as well as a mouth cushion, and comes with 3 sizes of each so it's easy to get a good fit. Keep reading on this site, and ask us anything!

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Mask2sleep
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Re: Introduction from a Newbie

Post by Mask2sleep » Fri Jul 30, 2010 5:09 am

Once again, thanks for all of the information.

I'm making a list of stuff I need to get for effective, hopefully comfortable treatment, could you please take a gander and let me know what I missed?

* xPAP machine the is data capable with a heated humidifier
* Mask
* If not full face mask, a chin strap - possible papcap?
* A hose "snuggie" to reduce rainout
* a hose / mask stand to keep the hose out of the way in bed

Anything else?

Does anyone have any suggestion on how the prescription should be written to get an xPAP machine with the data capability and humidifier, preferably the S9 that everyone seems happy with? Same for mask of choice, i've read where Rx have been for a specific mask and i'd like to have the choice. Should it be one Rx or multiple (one for the mask, one for machine, one for humidifier). I definitely want to get copies of the prescriptions. I figure maybe i'll get the first mask that insurance will pay for, and then depending on how that works, order another one from cpap.com of a different type to try it out. Assuming it fits right and there is minimal leaks, I expect i'll probably go FFM at first since I know I am a sometimes mouth breather and it seems the simplest way to get started with xPAP. The nasal pillows intrigue me, though. I don't even know why I am planning all this now since i'll get to try them out on Monday and then can make a informed decision.

I'm a little confused by the hybrids, and I don't think the sleep center has one of those to try. I see that it has nasal prongs like a pillow, but also some kind of mouth appliance, so it acts sort of like a full face? Does the mouth part go over or in the mouth? I'm also intrigued by that, but it seems a bit complicated to start out with.

I guess I could make this into a new hobby, collecting masks and xPAP parts... kind of a weird hobby!

Thanks for the help, you make this transition in my life a whole lot easier.
"I have not failed. I've just found 10,000 ways that don't work." - Thomas Edison

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carbonman
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Re: Introduction from a Newbie

Post by carbonman » Fri Jul 30, 2010 7:18 am

Mask2sleep wrote:
I guess I could make this into a new hobby, collecting masks and xPAP parts... kind of a weird hobby!
I call it an odyssey.
Once you find what works for you,
get the backups for all that works for you,
get a supply of expendables(filters, mask parts),etc.
all stored away in the closet.......
it's just part of life.

It really is pretty easy.
"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.

DreamOn
Posts: 1920
Joined: Fri Oct 23, 2009 10:13 am

Re: Introduction from a Newbie

Post by DreamOn » Fri Jul 30, 2010 11:10 am

Mask2sleep wrote:I'm making a list of stuff I need to get for effective, hopefully comfortable treatment, could you please take a gander and let me know what I missed?

* xPAP machine the is data capable with a heated humidifier
* Mask
* If not full face mask, a chin strap - possible papcap?
* A hose "snuggie" to reduce rainout
* a hose / mask stand to keep the hose out of the way in bed

Anything else?
Your list looks very complete to me! If you're getting an S9 machine, you may want to consider the optional heated hose (ClimateLine), but you may not need that until the weather is cooler. If you do end up using a nasal pillows mask, you may want to try a very tiny dab of Lansinoh lanolin on the outside of your nostrils. It's a bit tacky, so it helps to keep the nasal pillows in place. It can be found in the nursing mother supplies aisle at drugstores. I also used Ocean or Simply Saline Nasal Mist when I first started using nasal pillows, as it kept the tissues inside my nose moister. Humidifier adjustment can also help with that.
Does anyone have any suggestion on how the prescription should be written to get an xPAP machine with the data capability and humidifier, preferably the S9 that everyone seems happy with? Same for mask of choice, i've read where Rx have been for a specific mask and i'd like to have the choice. Should it be one Rx or multiple (one for the mask, one for machine, one for humidifier). I definitely want to get copies of the prescriptions. I figure maybe i'll get the first mask that insurance will pay for, and then depending on how that works, order another one from cpap.com of a different type to try it out.
There are several ways to go with the prescription. One way is to have the doctor write the prescription for the specific machine you want, including make and model. Another way is to have the doctor specify "access to Leak, AHI and AI data" on the prescription. That way, the DME would have to give you a fully data capable machine. The problem with the second method is that they could give you a machine from another manufacturer or an older model, such as the ResMed S8, instead of the S9 that you want.

If you're purchasing from a local DME and it's the S9 Autoset (APAP) that you want (and your prescription does not specifiy that particular make and model), then you would want to make sure that your prescription specifies that you need an APAP machine. Now, if you're purchasing from cpap.com instead, a prescription that just says "CPAP" will allow you to purchase either a CPAP or APAP machine. But most DMEs insist that the prescription specifies APAP if that's what you want, despite the fact that an APAP machine can also be run in CPAP mode.

As far as masks go, it's nice to get a prescription that says "full face, nasal pillows, nasal cushion or oro-nasal mask of patient's choice". Again, that applies more to local DMEs. If you're getting masks from cpap.com or cpapauction.com, then the prescription requirements are much more liberal. You can learn about their Rx requirements here: https://www.cpap.com/cpap-faq/Prescriptions.html.
I'm a little confused by the hybrids, and I don't think the sleep center has one of those to try. I see that it has nasal prongs like a pillow, but also some kind of mouth appliance, so it acts sort of like a full face? Does the mouth part go over or in the mouth?
The mouth cushion fits over (around) the mouth. It functions as a full-face mask, since you're getting therapy air via both nose and mouth (if your mouth is open). There are two hybrid masks: ResMed Liberty and InnoMed/RespCare Hybrid. Most local DMEs sell the Liberty. I think that most (but not all) hybrid users here prefer the InnoMed.
I guess I could make this into a new hobby, collecting masks and xPAP parts... kind of a weird hobby!
Well, you should see my collection of masks and miscellaneous xPAP items! It's not really a hobby for me, though...it just happened.

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Mask2sleep
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Re: Introduction from a Newbie

Post by Mask2sleep » Fri Jul 30, 2010 12:23 pm

You're a jewel, thank you! I'll be sure to ask for that on the prescriptions.
"I have not failed. I've just found 10,000 ways that don't work." - Thomas Edison