I talk a lot about insisting on getting a data capable machine if you possibly can, but I thought I’d put a list here of the data capable machines AND their model numbers since model names are often (deliberately) confusing.

I’ve color coded the recommendations as follows:

BLUE = best machines in the line.

GREEN=fully data capable

ORANGE=Caution recommended, see comments

RED=Not data capable, or only limited data available

A few notes on the following chart:  I will try to keep this up to date, but note the date in case I don’t.  I am only recommending the latest generation of each brand.  While the older generations may have some excellent machines, to have full data access without a lot of expense you want a 2010 model or later that uses a standard data card and reader, instead of a proprietary card and reader.

I have only listed CPAP and APAP machines here, I am not familiar with the bipap and ASV models.  Be sure to ask on a sleep apnea support forum BEFORE before agreeing to accept a bipap or ASV, as these are even more expensive machines that you can’t easily replace at your own expense if you are not happy with the machine.  Here’s a link to Rested Gal’s post on CPAPtalk.com that lists all of the current machines, including BiPAP’s and ASV’s–her list is much more comprehensive:  http://www.cpaptalk.com/viewtopic.php?p=307168#p307168

 CPAP/APAP MACHINES

As of September 2011

ResMed Data Capable Machines

Model	ID Number	Comments
S9 Autoset	36005	APAP with full efficacy data. Color LED screen with lots of data accessible on machine.  Mask fit feature.
S9 Elite	36003	CPAP with full efficacy data, Color LED screen with lots of data accessible on machine.

 AVOID these ResMed machines!

Model	ID Number	Comments
S9 Escape Auto	36002	Auto with limited efficacy data, NO leak data
S9 Ecape CPAP	36001	Cpap with compliance Data Only

The model name appears on the left side just above the On/Off button.  See

http:// model name for ResMed Machines

 

 

Philips Respironics Data Capable Machines (a.k.a “Remstar”)

Model	ID Number	Comments
PR System One REMstar Auto with A-Flex	DS550S	Auto with full efficacy data, but poor onscreen data.  Screen is hard to see, newer models are backlit.
PR System One REMstar Pro with C-Flex	DS450S	CPAP with full efficacy data

AVOID these Philips Respironics (Remstar) machines!

Model	ID Number	Comments
PR System One REMstar Plus CPAP Machine with C-Flex	DS 250S	CPAP with NO efficacy data
PR System One REMstar Pro with Auto IQ	DS450S Auto IQ	This auto machine is designed for titrating at home.  While it is data capable, it may have some features that limit its flexibility in the home setting and at this time it is NOT recommended.

DeVilbiss Intellipaps

Model	ID Number	Comments
Intellipap AutoAdjust Travel Cpap with SmartFlex	DV54D	Fully data capable via Smart Link software or most data via Smart Codes/web tool
Intellipap Standard Plus CPAP Machine with SmartFlex	DV53D	Fully data capable via Smart Link software or Smart Codes/web tool,

AVOID this DeVilbiss Intellipap!

Model	ID Number	Comments
Intellipap Standard Travel CPAP	DV51D	No Efficacy Data

Fisher & Paykel ICON–CAUTION!

Model	ID Number	Comments
Icon Auto CPAP	ICONAAN	NOT recommended at this time because software is not readily available.
Icon Premo CPAP	ICONPBN	NOT recommended at this time because software is not readily available.

AVOID this Fisher & Paykel Icon Machine

Model	ID Number	Comments
Icon Novo CPAP	ICONNBN	CPAP with NO efficacy data

A big thank you to Emillia, Pugsy, Rested Gal, and others from the CPAPTalk.com forum for their help and input!

Please send me feedback if there are any inaccuracies or as you have experience with other machines not listed.

Someone asked me to post where to get the software to read the data off your machines and cards.  All I can suggest is to do a search on my favorite CPAP forum (which is easy enough to guess if you read my blog!).  That will generally lead you to a software source, including some free, open source software.  I’m a bit reluctant to post any more information, so that we don’t offend the CPAP gods (and the copyright gods!) who would be happy to shut off any avenue of patient access to our own treatment data.  It’s out there if you know where to look!

*Brick:  Machine without efficacy data— as in “about as useful in treating OSA as a brick”.

Unfortunately, too many people read “What you need to know BEFORE you meet your DME” after a DME has stuck them with a brick.  So now what?

 1.  How long have you had that brick?

0 to 1 month:  You have a good chance of getting a data capable machine, particularly if it’s a rental and not a purchase.  NOTE:  If you are on Traditional Medicare (Parts A and B, NOT Medicare C/Advantage), it is most definitely a rental.  If you are not on Traditional Medicare or if you have any other insurance, you must call your insurance company to confirm if your machine is a rental or not, and how long the rental period lasts. 

 If your machine was entirely a purchase, you may find it difficult to get the brick replaced with a data-capable machine.  It’s worth a try, but expect it to be difficult and there is no guarantee of success (nothing on this blog constitutes any guarantee, anyway). 

 1 month – 3 months:  Chances of getting your brick swapped out for a data-capable machine are fair at best.  It still may be worth a try, however.

 After 3 months:  Your chances of getting your brick swapped out for a data-capable machine are almost nil.  Some very few people have succeeded, after a LOT of difficulty.  You might consider either buying what you want out of pocket from an online supplier (much cheaper than a brick and mortar DME!) or look for a used machine via Secondwind.com, craigslist, cpapauction.com, etc.  This will save you a lot of banging your head against a wall!

2.  Be sure to confirm that your insurance will pay for ANY E0601 machine, whether it’s data capable or not, CPAP or auto.  The very first thing the DME is going to tell you if you tell them you want a data capable machine is “your insurance won’t cover that”.  99% of the time this is NOT true, but you need to check before you approach the DME, or—like any good used car salesman—they will convince you otherwise.  Even better if you can get your DME confirmation in writing (this is rarely possible).  HINT:  Traditional Medicare always covers any E0601 machine!

 3.  The next lie the DME will tell you is that your prescription from the doctor must specify data capable and/or auto.  This is not really true, BUT, if you walk in there with a prescription specifying “patient access to AHI and leak data” and/or “auto adjusting-cpap” you will totally poke a hole in this argument before it happens.  Without a specific prescription, you must fight an uphill battle. 

 Note that sometimes you can’t get this written in your prescription from a sleep doctor or clinic, because they don’t necessarily WANT you to have access to your data or the ability to use the machine in auto mode.  Whether or not you want to stick with that sleep doctor/clinic is another issue, but meanwhile, you should know that you can get the prescription from ANY doctor, or even a dentist.  So if your sleep doctor refuses but you have a good PCP or dentist, relative, or friend with M.D. after their name, ask them to write the prescription exactly as you want it. 

 4.  Choose your make and model.  Once you know your insurance will cover more than a brick and you have the prescription in hand, take the time BEFORE you approach the DME again to decide exactly what you want.  This time it is definitely for keeps—no chance of coming back yet again if you change your mind and want the fancier E0601 machine, so make sure you decide exactly what you want—you’re going to be stuck with it for at least FIVE years.

 Data Capable:  The following machines are data capable in the ResMed and Philips Respironics Lines.  If you want another brand, do your own homework!

 ResMed:  Ask for the ResMed Elite or ResMed Autoset.  (AVOID the Escape or Escape Auto—they are not data capable!)  The latest model of ResMed is S9.  S8’s and previous models are discontinued.

 Philips Respironics:  Ask for the System One Pro with C-flex Plus or System One Auto with A-Flex.  Series M machines have been discontinued.  (AVOID the System One CPAP Plus with C-flex—not data capable).  Note how confusing the names are as the Pro also has “plus” in the name!  To further confuse you, all the Philips Respironics machines are marked “Remstar” but that name isn’t really used anymore. 

 Medicare and many other insurers require an outright purchase of the humidifier.  The blower is a rental, but the humidifier is a purchase.  So if you are stuck with a brick, consider getting the same manufacturer and production series so that you can use the humidifier you already bought with your new blower,  i.e. if you got stuck with a ResMed S9 Escape, get a ResMed S9 Elite or Auto, rather than a Philips machine or an S8.  Otherwise you may be stuck with paying a few hundred out of pocket for a new humidifier!   (If you have to get a different humidifier, buy it online to save money!)

 5.  Now start shopping.  Call around to other in network DME’s (unless your insurer doesn’t care what DME provider you use) and find out if they will provide you with exactly the machine you want, on your insurance, and given that a portion of the rental period (if there is one) has already been used (hopefully less than one month).  Once you find a DME who will supply what you want, you will have a lot more leverage with your current DME, the brick provider. 

 6.  Call your current DME and explain that you are not happy with the machine they gave you and you want it replaced with the machine you have chosen.  Be prepared to listen to a litany of lies* about why you can’t have such a machine:

            a.  No machines have efficacy data.

            b.  Your brick has data (yes, but not efficacy data).

            c.  Patients are not allowed to access their own data—it’s illegal.

            d.  There is no software available for patients to monitor their own data.

            e.  Your insurance doesn’t cover a data-capable machine.

            f.  We don’t carry that machine. 

g.  We (or your doctor) can download your card for you (so what?—you already know if you’re compliant or not!).

h.  You have to pay more for a better machine (in most cases you do NOT.  Make sure you’ve read  “Don’t Pay that Upcharge” before you talk to your DME about swapping the brick). 

 *Note:  Your DME may not be deliberately lying—he or she may actually believe some of these stupid things are true.  But you know better, because you have done your homework!

 Before going on to the next step, take a deep breath.  It’s understandable to feel angry, frustrated, or defeated by the way you will be treated by your DME.  But if you stay calm, polite, and firm, you’re much more likely to succeed. If you’re a wimp like me, don’t let them run all over you and make you feel like you don’t know what you’re talking about—on the other hand, getting angry and nasty will not help your cause. 

  7.  Calmly, politely, but firmly tell your DME which machine you want and that if that DME is not willing/able to provide it, you have a firm commitment from XYZ DME to provide you with exactly what you want (with your current prescription and insurance).  If they would like to keep you as a customer, then they need to provide what you are asking for, or you will return the brick and take your business to the other DME. 

 NOTE:  do NOT make this threat without a firm commitment from the other DME to provide what you want—the only thing worse than a brick is NO CPAP.  If you cannot find another DME to commit to supplying exactly what you want, you cannot risk playing hardball with the brick supplier unless you are prepared to buy a data capable machine at your own expense.  You can still ask the brick supplier to replace it with a better machine, but you won’t have the same amount of leverage. 

 MUST the DME swap out your brick for a data capable machine?  No, not really.  They gave you a brand new E0601 machine which you accepted, and if they swap it out for you they’ll be taking back a used machine for a brand new and more expensive machine—for no additional money.  This hurts their profit margin.  And most people (who aren’t as smart as you) accept a brick and never complain.  So why should you be special?   

 Just keep in mind this is YOUR therapy, and you have a right to a machine that will support your knowledge and understanding of your therapy to make it the best it can possibly be.  If you had understood all of this before you accepted the brick, you would NOT have accepted the brick in the first place. 

 By giving people bricks to maximize their profits, the DME is doing a disservice to its customers (some DME’s understand this and will not issue compliance-only machines).  And the DME will still make a profit no matter which machine you get, albeit perhaps a smaller one.  So you don’t have to feel too sorry for them.  If they are unhappy with the amount your insurer reimburses them for machines, that’s something they need to take up with the insurer, not with you.  If they are nice enough to help you with this, they may get a lifetime of repeat business from you that will more than make up for the slight decrease in profit they will suffer initially. 

 8.  Be prepared for the next barrage of dissuasive techniques like:

a.  “I have to check with management”, corporate, etc.  (Your response should be—“It’s OK to check with the manager, but if your company can’t supply it, XYZ will.” And set a SHORT deadline for a response—24 to 48 hours at most). 

b.  We don’t have that in stock and it will take X amount of time (often, if you push, they  “just so happen” to manage to locate one on the shelf in the stock room).

c.  You’ll have to pay X amount more (in most cases, this practice of “balance billing” is illegal or violates their contract with your insurance company).

d.  Beware the “bait and switch”—you arrive to pick up your new machine to find it’s not what you requested—i.e. they “didn’t notice” the ResMed Auto was an Escape Auto or they give you an older, discontinued model. 

e.  They ask you to sign a form on return that says you are “refusing therapy”.  Don’t sign it—if they insist in order to credit your return, be sure to write that you are NOT refusing therapy, only rejecting that particular model of machine.  Make sure you know exactly what is in anything they ask you to sign.  Don’t rely on their verbal assurances of what it is. 

f.  Be sure to keep copies of any paperwork and WATCH your billing to make sure they don’t continue to charge your insurer for the returned machine if you switch DME’s or two machines if you stay with that DME. 

 

 9.  Follow-up.  Congratulate yourself on being an educated person who took matters into your own hands to ensure your health.  Think of the newbies who don’t know how to do this, and who may even give up on CPAP all together because they cannot figure out why the therapy is uncomfortable or not working with their data-less machines.  If you leave a DME because it won’t replace the brick, consider writing a letter (writing is always better) to the referring doctor or sleep clinic and copying it to the manager of the DME telling them exactly why they lost your business and why the doctor/sleep center should reconsider referring any other patients there.  Remember, you should be brief, factual, and polite, so that your letter doesn’t end up in the round file as that of some raving, sleep-deprived lunatic. 

 It’s also a nice thing to write a letter thanking or praising a DME who bends over backwards to replace your machine so that you are satisfied with their service.  That will go a long way in getting them to do it again for the next guy. 

 Keep in mind, too, that if you have the financial resources, you can always bypass this rigmarole  and buy your own machine, or keep the brick as a backup and buy what you want for your main machine (NOTE:  if you intend to keep the brick, make sure to keep using the brick until your compliance requirements are met, if they haven’t been already).  Not everyone has the financial wherewithal to buy their own machine, and you’ve already paid into your insurance, but sometimes the aggravation of dealing with the DME in your sleep-deprived state is just not worth it. 

 Oops, there’s the wimp in me coming you.  YOU should be polite but firm, and hopefully you will succeed.  Good luck, and be sure to let us know in the comments how it goes for you. 

 

 

STICKER  SHOCK!

A recent poster on CPAPTALK.com posted the charges on her bill from the DME for her new CPAP set up.  I hope she doesn’t mind, but I’m going to post what her DME charged for things:

$331 – One month rental of PR Systerm One Pro machine (supposedly will only go up to price of machine?)
$835 – PR System One humidifier
$980 – Mirage Quattro FF mask  [with headgear, over $1000 for a Quattro!!!!!!!!!!!!!!!!!!]
$164 – Headgear
$125 – Tubing
$33 – Filter

Total was $2469.34

 OMG!!!!!!!!!!!!! 

And of course, it’s terrifying when you get a bill like this–if you don’t understand your Medicare coverage, this could give you a heart attack!

NOTE:  The following applies to “Traditional” Medicare—that is Medicare Parts A and B, NOT Medicare C (also known as Medicare Advantage—often HMO Medicare).  The rules are slightly different for Medicare Advantage users, but not THAT different!

First thing to understand is that the DME’s bill is a work of pure fiction.  There’s a reason DME’s do this—Medicare determines it’s allowable fees for DME equipment based in part on the difference between the DME charges and the actual reimbursement received.  Obviously, this DME was trying to jack up that difference to maximize the reimbursement rates when Medicare sets the schedule.  Hopefully, Medicare is smarter than that (I wouldn’t be on it, though, it’s all a numbers game). 

But seriously, this is a lot like the MSRP sticker on a new car.  No insurance company will pay that price, just as nobody walking into a new car dealer should pay the sticker price.  And to me, it says I can trust that DME about as much as I can trust a car salesman—not much. 

Pity the poor uninsured sucker who walks into a DME and doesn’t know all this.  Let’s bow our heads and have a moment of silence for that poor shlub. . . . . . . . .  . .  . .

OK, now on to Medicare.  Medicare sets the allowable fee for each CPAP item.  Those rates vary by state and are published if you know where to look on the Medicare/CMS website.  Here is the site.   From that page, you can download a state by state chart in Excel or PDF format and look up exactly what Medicare’s allowable fee is for each item.  This schedule is updated every January and July, so be sure to check for the current schedule. 

 In order to interpret that chart, you need to know the HCPC’s codes (billing codes) for various items.  Here’s the secret code:

E0601	Continuous airway pressure (CPAP) device (e.g. smart CPAP, auto CPAP, CPAP)
E0561	Humidifier, used with CPAP device
E0562	Heated humidifier, used with CPAP device
A7033	Nasal pillows/seals, replacement for nasal application device, pair
A7034	Nasal interface (mask or cannula type) used with positive airway pressure device, with or without head strap
A7035	Headgear, used with CPAP device
A7036	Chin strap, used with CPAP device
A7037	Tubing, used with CPAP device
A7038	Disposable filter used with CPAP device
A7039	Non-disposable filter used with CPAP device
A7044	Oral interface used with positive airway pressure device
A7046	Humidifier chamber – replacement
E0470	Bilevel
E0471	Bilevel with backup rate
E1399	Miscellaneous durable medical equipment items

 Here, for example, is the Medicare allowable in my state for each item in the poster’s bill:

$331 – One month rental of machine.  Medicare allows $95.16 per month.

$835 – humidifier.  Medicare allows $72.55 for the humidifier plus $17.64 for the tank
$980 –  Mask (Nasal interface) Medicare allows $106.35 (note:  on the Medicare fee schedule that is with or without headgear, but they charged separately for the headgear!) 
$164 – Headgear.  Medicare allows $35.93
$125 – Tubing.  Medicare allows $37.08
$33 – Filter.  Medicare allows $13.86

Medicare will pay 80% of the allowable fee, and you and/or your supplemental insurance (Medi-gap) pay the rest.  THE DME IS PROHIBITED BY LAW FROM CHARGING YOU MORE THAN THE MEDICARE ALLOWABLE FEE!!!!  So if you want a bells and whistles fancy APAP that is coded as an E0601 machine, the DME cannot charge you more than the amount Medicare allows (see “Don’t pay that upcharge).

It’s important to understand that Medicare purchases all of your CPAP supplies EXCEPT for the machine itself.  The humidifier, even though it’s integral to the machine, is also a purchase.  But the machine is a “capped rental”.  That means that Medicare and you will pay the allowable rental fee on the machine for 13 months (roughly), and then the machine is yours.  So be prepared for a monthly bill for 20% of the allowable fee unless your supplemental insurance covers that portion 100%.  Be aware that you will run into next year’s deductible and have to pay that, too, unless your supplemental insurance covers that. 

Medicare has a generous replacement schedule for CPAP supplies:

Nasal pillows/seals, replacement for nasal application device, pair	2 per 1 month
Nasal interface (mask or cannula type) used with positive airway pressure device, with or without head strap	1 per 3 months
Headgear, used with CPAP device	1 per 6 months
Chin strap, used with CPAP device	1 per 6 months
Tubing, used with CPAP device	1 per 3 months
Disposable filter used with CPAP device	2 per 1 month
Non-disposable filter used with CPAP device	1 per 6 months
Humidifier chamber – replacement	1 per 6 months

 Some DME’s like to put you on  a regular replacement schedule for CPAP supplies, and it can be helpful at first.  I recommend that in the beginning you stock up on supplies, so that if something suddenly goes wrong you will have a ready replacement.  But after a while, you will have plenty of supplies (except for filters which I replace regularly), and you won’t need to get automatic shipments—it may be tricky to get the DME to stop sending you everything and stop billing for it.  The only thing I would like to get regularly at this point is the filters.  If you use nasal pillows, regular replacement for those on the Medicare schedule is also a good idea. 

Other DME’s refuse to provide you with a simple cushion or nasal pillows on the Medicare schedule, because it’s a lot of work and time to bill Medicare.  You need to decide if you want to keep doing business with that DME if that’s the case—sometimes it’s just not worth the hassle when the DME across town or online WILL provide you with what you need.   

When you open your DME’s bill, don’t be frightened.  Remember that the DME can put any amount down they want (i.e. $1000 for a Quattro–HA!), but all they will get is what Medicare allows.

I’m sick again/still with an ugly case of asthmatic bronchitis–“almost, but not quite pneumonia” is how the pulmonologist put it.  I cough and cough all day and I’m worn out.  I’m on 3 inhalers and 5 medicines–it sucks!

But I’m getting wonderful, restful sleep at night–a minor miracle.  I put on my FF Quattro mask, crank up the humidity, and sleep great.  This is about the only thing going in my favor right now–I feel so rotten and I don’t know how I’d survive the sleep deprivation that used to accompany my respiratory infections on top of everything else.  And I don’t cough during the night!

It’s impossible to wear nasal pillows because I’m so congested and irritated, but the Quattro and I are really doing well together with the addition of a homemade mask liner (while I’m awaiting a fancy Padacheek one).  I like having the soft cotton against my face instead of cold silicone, and it’s like wrapping my face in a soft, soothing blanket.  The liner is stopping the leaks that were still plaguing me, despite my “Taming” techniques.

Today is Sunday and I woke at 6:40 a.m. like usual.  I felt so wonderful lying there–calm and breathing easy.  The air was cool but not cold in my face, the conducted machine sound was quiet, my body was relaxed.  I went back to sleep for almost 2 hours.  BLISS!!!!!!!!!

Days like this I love my CPAP!

One of the common newbie themes on the boards is how bad their sleep is at first.  They may  or may not have perceived a problem with untreated OSA, but when new to the machine and mask, people are acutely aware of waking and discomfort, and perceive their sleep to be much worse than it ever was.    This is a common reason people give up on CPAP therapy–there is a period of sleep deprivation that’s just as severe as having a newborn baby in the house, but without the cute little baby to cuddle and make it all worth the torture.

The normal sleep pattern is composed of cycles of deeper and lighter sleep.  Most people do not come fully awake and aware when those lighter sleep stages occur.  If you have severe OSA, you might wake more frequently in the struggle to breathe.  That’s why OSA sufferers find they have to urinate more frequently during the night–they come awake more fully in those lighter sleep stages than most people, and with that comes awareness of a full bladder.  Many people with OSA are surprised to find  that once the OSA is well-treated, they no longer have to get up at night to urinate.  Their kidneys and bladders haven’t changed, only their level of wakefulness that lets them feel the urge to empty their bladders.

Now, add to this mix a machine that may be noisy and add extra light to the room, a chunk of hard and heavy plastic strapped tightly to your face,  air blowing directly in your face and cold vented air blowing on your body or making noise against the bed clothes, feelings of claustrophobia, etc.  As you come to those lighter stages of arousal during the normal sleep cycle, there are plenty of disturbances here to bring you even further into waking.  So, in the beginning stages of Xpap treatment, you may come awake more frequently and fully than you do without treatment.

Sleep deprivation takes its toll, and tolerance for all these disturbances erodes.  This is why some people starting out on CPAP feel worse instead of better.  It’s not surprising at all.  I think newbies should be warned to expect it–if it doesn’t happen, they are really lucky.

The best advice I can give is HANG IN THERE.  It will get better, but you must give it time.  Not hours or days.  Probably weeks or months.  I know that weeks or months sound unsurvivable, so take it one night at a time or you will be overwhelmed.

Each night when you wake, make a mental note of what’s bothering you.  Each day tackle the biggest bother–is the mask hurting or uncomfortable, is the air blowing too cold or warm, are you mouth breathing, are you leaking, is the noise bothering you?  Pick the worst thing and work on it.

If you work diligently to eliminate the annoyances, you should see your sleep periods begin to lengthen out.  I considered it a victory when I could sleep 4 hours at a stretch instead of 2,  then 6, and then over 8 hours one glorious weekend.

It WILL get better, but it helps to understand that it might get worse first.

I am getting over my usual winter upper respiratory crud.  It’s pretty bad this year.  Probably I had both my usual asthmatic bronchitis (an autoimmune response to a very mild cold) AND adult croup.  In any case, it wasn’t pretty, and I’m on a boatload of steroids and antibiotics.

Ordinarily when I have my really bad respiratory issues, sleep becomes nearly non-existent.  I end up sleeping in the recliner chair, catching short cat naps between the sneezing, nose blowing, coughing, wheezing, etc.  My reserve goes down and down as sleep deprivation adds to the mix.

THIS TIME WAS DIFFERENT!  I found I could not use my nasal pillows when the nasal congestion was present.  I could clear out my nose with saline spray and the usual arsenal of anithistamines, but after 1 -2 hours I’d wake gasping for breath with a fully plugged nose.  So I knew I needed to switch to a FF mask. 

The only FF mask I have is the Mirage Quattro by ResMed.  To say I don’t get along with that mask is an understatement, but I was desparate.  So I put a lot of thought into how to fit it, and SUCCEEDED, to my great surprise (I will create a page with fitting instructions). 

I managed to sleep 8 1/2 hours after finally figuring out how to fit the Quattro.  In a row!  Unheard of when I have respiratory stuff going on–and I was laying down like a normal person, not up in a chair or on “pillow mountain”. 

I’ve been using the Quattro every night (finally switched back to nasal pillows last night after lots of high pressure leaks at 4 a.m.) and I’ve been getting some really good, quality sleep.  I wake up feeling very good, but as soon as the mask is off the coughing and wheezing start.  But that’s OK, the restorative sleep I’ve been getting has made me much more able to deal with this respiratory nastiness. 

I am quite pleased and amazed that CPAP is helping me through this.  This is the first cold/respiratory illness I’ve had in the 10 months I’ve been using CPAP (I think CPAP is helping me fight off respiratory stuff as well), and I was really dreading it.  It turned out that sleep was not the horrible issue it’s been with my respiratory problems in the past, thanks to the CPAP.  I am so grateful.

Happy new year to one and all–I hope it’s a healthy year with lots of wonderful sleep.

I’ve posted before about how the slinky hose of the FX mask is heavy and tends to pull the pillows right out of your nose if it hangs down.  The best cure for that is a “hose management system” or hose hanger that holds the hose over my head and keeps it positioned just right against my nose. 

My original system simply held the hose over my head, hanging from a swivel lamp mounted on the wall above my bed. 

You can see my home-made “trapeze” made of soda straws.  The idea was to let the hose roll forward and back as needed when I turned and needed more or less length.

It didn’t work . . .

Next, I tried using an elastic cord (actually an elastic hairband cut open and tied to hair scrunchies on the hose) routed through a “tube” (a plastic hair curler), but that didn’t move the way I needed either.

What I really needed was a pulley, but I thought that any I might find at a hardware store would be heavy and possibly too big.  There’s only so much weight I want to put on that swivel lamp.

At my local fabric store, I started looking for things that might work.  Curtains sometimes move with small pulleys, so I looked in that department, but I didn’t find anything. 

Then, I stumbled on this:

Hmmm, this might make a pulley . . .

If you hang it on this:

So here’s my “pulley”:  ( I connected two key chains so I’d have a way to hang the apparatus)

Here’s what goes through the pulley:

I cut open an elastic headband and tied on two scrunchies.

Now, through the pulley:

Put the scrunchies on the hose:

And hang it up:

This worked OK, but better when I added a counter weight to the side of the hose that wasn’t directly attached to the mask (sorry, no picture).

The elastic cord is not quite long enough to let me turn onto my left side easily–I have to give the hose a tug.  So my next tweak is either to get a longer cord, or lower the hose hanger a bit.

If you don’t have a swivel lamp over your bed, you can hang it from a variety of things.  One idea is a plant hanger like this mounted on the wall over the bed, a cup hook screwed onto the wall or the back of a headboard, or maybe a removeable Command Hook like this.  I have never found the Command hooks to be secure, but this guy seems to think they are OK– See this YouTube! video of a commercially available hose hanger called the “Hoze Boss” (which you might want to buy if you don’t want to play arts and crafts like me–I may buy it myself one of these days). 

LEGAL DISCLAIMER:  Use common sense for goodness sakes!  Make sure the set up for hanging your hanger is secure so that you don’t end up banging your head into it, pulling it off the wall and putting out an eye, or pulling off a chunk of wall when you turn over.  If you’re too dumb to figure out a way to do this safely, don’t blame me!

The Philips Respironics System One Auto PAP with A-Flex that I use is a great machine.   It’s whisper quiet, comfortable, and easy to use.  The biggest complaint I have is that the LED screen gives very little data, and it’s hard to read.  The only useful data you can get from the screen is 7 and 30 day averages for AHI’s, and because they are averages, these readings aren’t really that useful at all.

I wasn’t too happy about having to spend $100 out of pocket to buy the Encore Viewer 2.0 software that is required to read the data card, and I’m green with envy for the people who have Resmed S9 machines that show so much data on an easy to read, colorful, LED screen right on the machine.  It’s cumbersome to remove the data card from my machine, plug a card reader (fortunately, the PR S1’s use a standard SD card that can be read by any SD card reader), fire up Encore Viewer, upload the data to my computer, then generate a report (zzzzzzzzzzzzzzzz) that takes time and gives a buttload of data for a week at a time.  Cumbersome!

Nevertheless, the process makes up for itself in that you get a lot of useful data.  When I was having problems with waking in the middle of the night, I could see the graphic representation of exactly why, and understanding what was going on allowed me to fix the problem instead of complaining about it.

Each Encore Viewer report is about 13 or 14 pages right now.  I think these reports will go ever longer, since the software does not allow the user to select any parameters for data except choosing the week for daily details.  The first few pages show compliance information, pressure trends, long-term sleep therapy trends, and patterns of use that always default to starting from the very beginning of CPAP usage to the present time.  Currently it is taking 2 pages to show patterns of use–I suspect that this will take up more and more pages as time goes on.  I’m not quite sure what the point of that is, because this is information for me, the patient (hello, remember me?), NOT a clinician.  I know how much I use it and when.  I could care less about a graphic representation that takes up so much bandwidth.

Finally, on page 6 now, I get to the first page of “Daily Details”.  That is the meat–this shows me exactly what happened during a particular night on my machine.  That’s the useful data.

(To steal a phrase from my favorite knit blogger, click on a graph to “enbiggen”)

Let’s look at leak data first:

The green line at the top of the graph means “Normal Mask Fit”.  So why is the graph shoing leaks around 25-28 LPM?  Every mask has an “acceptable leak rate” depending on the pressure.  If not, no air would come out the CO2 vent.  You can find a chart showing the acceptable leak rate for your mask by looking in the information booklet that came with your mask or looking it up online.  In this case, I was using the Swfit FX mask, and you can see a copy of the chart here (see chart on page 5 called “Pressure Flow Curve”)

Resmed machines show the leak rate as 0 if the leaks are within the acceptable leak rate, but PR’s show the actual leak rate.  In this case, the average leak rate was 26.0 LPM, well within the masks range for the pressures I was using this night.

If you notice a break in data, that’s because I was watching t.v. in the evening and–realizing I was probably going to fall asleep–I put my CPAP on.  When I woke off, I turned it off and got ready for bed, and then put my mask back on for a real sleep.

Pressure data is what I look at next:

My pressure range is 9 to 15 cm H20.  This was a good night, and my pressures stayed fairly low.  Here’s an example of a different night:

It’s very rare for me to bump up against the top pressure like that now that it’s set at 15.  I was having a lot of nasal congestion.  Despite all that, my machine did a great job–my AHI was only 0.2.

Here’s my best night ever:

AHI was 0.0.  July 4, 2010  No fireworks while I slept ;o)  I went to bed around 11:30 (O on the graph) and between 2:30 and 4:30 a.m. (hours 3 to 5 on the graph) I was probably in deep REM sleep.  You can see that the machine handled it beautifully to stop any OA’s CA’s or hypopneas from occurring.

Then I look at the Daily Events Per Hour:

This chart isn’t particularly useful for me at this point in time, but it could be very useful if you are having problems.  For example, someone who is having a lot of central apneas (also called “clear airway” apneas) can look to see if they are being induced at a particular pressure.  Or, if the pressure is too low, it might show increased obstructive apneas and hypopneas a the lower pressures.

Next, there are “Sleep Therapy Flags”:

This chart can be useful to show “cluster” events.  For example, some people may have clusters of OA’s, CA’s, or Hypopneas during REM sleep.  It’s possible to have a fairly low AHI, but if the events are all clustered at a particular time of the night, that can be useful to determine what might be going on if you are not feeling the benefit of your therapy.

Finally, when there’s a problem, it’s helpful to look at the entire page of Daily Details. 

Mine is not particularly useful because since I have such good therapy there’s nothing much to see, but if you look at all three of the top graphs together they can tell you a lot.  For example, if your leaks go up on the leak chart, you might expect to see increases in the events recorded on the Sleep Therapy Flags chart at the same corresponding time, or wild pressure increases.  Or, if you have a sudden and prolonged apnic event, you can expect to see big changes in the pressure to combat it.

If I were to run my machine in straight CPAP mode, the pressure data would be reflected as a flat line, unless I used the ramping feature.

Take a look at your data (you DO have a data capable machine, don’t you????) and see what you can learn.  It’s very useful information.

Almost every day I see a post from a newbie complaining that they will never get used to CPAP and inquiring about surgery instead.  I think this is part of those stages of acceptance–denial and bargaining are two stages that occur before final acceptance.  Everyone, including me, goes through that stage of denying that CPAP is that necessary and bargaining that if they just have the surgery the apnea will go away.

But some people get stuck on the idea of surgery and don’t put the effort into CPAP.

There are various types of surgeries.  Some surgeries “ream out” the nose or straighten deviated septums to give air more room for passage.  Other surgeries remodel the back of the throat–trimming or removing the uvula and remodeling the soft palate, often combined with removing tonsils and adenoids.  Some people undergo mandibular advancement–where they break the jaw, prop it forward, and wire it shut until everything heals.

I have no personal experience, but everyone whom I’ve seen go through surgeries like this (except on the websites for surgeons and dentists who do this kind of surgery)  say the recovery is prolonged and painful.  And that doesn’t even begin to cover the lifelong issues that a person can have with swallowing and sinus problems.  Some people can no longer swallow as easily after these surgeries.

There’s a reason that we have uvulas and soft palates–the uvula has a role in sealing off the nasal cavity during swallow and in production of certain speech sounds.  People with impaired or missing uvulas seem to have swallow coordination issues, putting their airways at risk.

Meanwhile, the statistics are scary.  I think I’ve seen that only about 50% of people who have these surgeries have success, and “success” is defined as a 50% reduction (NOT elimination) of apnic events.  Zikes!!!!  And even if you are able to get off CPAP after one of these surgeries, chances are that even a small weight gain will put you right back on it.

Adjustment to CPAP can be brutal.  The difference between that and the pain and discomfort of surgery is primarily that once the surgery is done you can’t escape it.  You have to get through the recovery process, whether you want to or not.  If you are having a tough time with CPAP, you can stop, health risks be damned.  (But don’t stop!)

On a scale of 1 to 10 for pain and discomfort, these surgeries have to be about 1 million.  CPAP, on the other hand, can be really crappy, but on that same scale, I’d put it at about a 7.

You lose some sleep, your nose or face hurts, your mouth and throat feel dry, the air blowing in your face is annoying, it’s hard to get used to the noise or the pressure from the straps, you feel claustrophobic.  Yes, these all are true, but a good attitude and some dedicated problem solving can eliminate all of them.  None of these–not even all of them together–come close to the pain, discomfort, down time, and risks of surgery.  And CPAP, once properly titrated and tolerated is 100% effective.

Do the math!

Attitude is key.  If you keep looking for an out like surgery, you may not ever give yourself a chance to adjust to CPAP.  And if the surgery does not “cure” you, you could be right back where you started–needing to get used to CPAP.

Try CPAP first, with a good, positive attitude to succeed.  You CAN do it.  And once you do, if you still want surgery–really want surgery–go for it.  At least then you’ll know if it doesn’t work out, you will still have CPAP to fall back on.

I learned something new from that bear. The bear snores. 

You think it’s bad when people snore?  You “ain’t heard nothing” until you’ve heard a bear snore! 

See the expression on the doll babies’ faces?  Do their expressions not scream “GET ME OUT OF HERE” to you?????

But Toby (the bear) has no health insurance.  And he just cannot afford $2000 or so for a sleep test at a bona fide sleep lab.  So I offered him a free night on my autopap machine, to see what his AHI’s were and what pressures might work for him.  Then we can look for a machine and mask at Goodwill or something for him.

Yowsa, the AHI was 600!!!!  And his O2 sats were in the toilet–O!!!!  It’s a wonder he’s even alive!  Severe sleep apnea!  I had to run that machine on straight CPAP at 19 cm H2O just to get his AHI below 5.  Sheesh!

When I set Toby up with my CPAP, I even let him try my new Swift FX.  The weight of the short hose threatened to pull him right out of the bed.  He didn’t like it sliding across his chest any more than I do.  And he kept wiggling around the bed, pulling the pillows away from his nose. 

I pulled the hose all the way up on my homemade hose hanger so it was fully suspended above Toby instead of lying beside him, and that worked great.  He didn’t have the heavy hose weighing him down or pulling on him. 

What a great idea!  Why didn’t I think of that?

When I finally pried the cpap machine off the bear and fought off the dolls who had visions of snore free nights dancing in their heads, I tried pulling the FX hose up higher in my homemade hose holder and VIOLA!, best night yet with the FX.  I could turn without problems and the FX didn’t slip so easily out of my nose. 

Whaddya know!  The darn bear taught me something after all.