Posted by: Jan | May 22, 2010

Clueless in Sleep Apnea

Sometimes (!) I can be really dense.

I posted last about mask tweaks I have made.  As you can see, I was at a point where it required TWO  O-rings just to keep my Swift LT for Her nasal pillows from leaking.  While that’s a good temporary tweak, I should have taken it as a sign that all was not right, but I did not. 

 Around the same time, I joined “The Great Pillow Exchange” on CPAP.com.  This thread helps people find others using the same nasal pillow masks and exchange their “extra” nasal pillows. 

 Why do we have “extra” nasal pillows?  Most (not all) manufacturers package a nasal mask with at least 3 sets of nasal pillows.  The Swift LT for Her comes with Medium, Small, and Extra Small.  The Swift LT (not for her) comes with Small, Medium, and Large.  This makes perfect sense the first time you get a nasal mask because it’s hard to tell exactly what size you will need until you’ve tried them.  A fitting in a clinic or store isn’t enough—the dynamics of your face change when you lie down and lie in your own bed with your own unique sleeping position and bedding.  So it’s great to have three sizes to choose from to determine what works for you.

 Sometimes you think one particular size is great, until you’ve slept in it and your pressure has increased, and you find that it’s too small or big.  Newbies to nasal pillows often start out with pillows that are two small and have a lot of leakage.  The collective wisdom says that you should go with the largest size pillows that work for you, though it doesn’t apply to all.  The larger the pillow, the more contact with the skin around your nostrils to support the pillow, and the larger the opening pointing into your nose to give you plenty of airflow. 

Anyway, you generally settle on a size, and then you have two unused pillows.  Three or six months later (depending on you insurance, generally), you get a brand new mask with three sizes of pillows again, but you only use one set.  Now you have 4 unused sets of pillows in sizes you don’t need.  This is wasteful and kind of dumb.

 Thus the Great Pillow Exchange was born to help people swap out the pillows they don’t need for the ones they do.  That way you can always have at least a spare pair that you know will be there if you need it. 

 Sort of on a whim, I decided to participate in the Great Pillow Exchange (GPE from now on).  It couldn’t have been easier.  I posted what size I had to trade and what size I needed.  I was contacted by a nice woman named Teri, who had the size I needed (small) and was willing to trade it for my extra small.  And so we exchanged.  I thought that I would use Teri’s small as my “backup”. 

 But, during the week we were orchestrating the exchange (right after the photo was taken on my previous post), I started to have terrible leakage problems.  Some nights I just could NOT get the pillow to seal without a pillow jammed up and literally holding the pillows against my nose—and that HURT!  I even tried some of my “dead mask collection”—that odd assortment of FF and nasal masks I tried before I settled on the nasal pillows.  I don’t know how I wore ANY of those for even 5 minutes, let alone all night.  YUCK!!!!!!!!!!!!  And I started having one of my worst apnea symptoms back for the first time since starting CPAP—waking up in a puddle of sweat and panic in the middle of the night.  Weird because my AHI’s and pressure readings weren’t significantly bad, but something was definitely happening and I didn’t like it!

 So when Teri’s pillows arrived, I was curious to see if anything would change.  The first thing I noticed is that they felt SO different.  My old pillows were soft, slick, and mushy—the nasal pillows collapsed with the slightest pressure.  The surface of the Teri pillows was a bit “toothy” rather than slick, and they felt much more firm.  The pillows didn’t collapse unless you put a lot of pressure on them.  I washed them up really well, dried them, and used them that very night.

 What a difference!  The pillows almost jumped up to greet my nose with the machine turned on.  They sealed firmly against my nose and didn’t slip around.  I’m still having some minor little leaks (always have), but no big jet plane leaks like the old pillows were causing.  I slept great—no panic and sweating—and woke up to an AHI of 0.2, my personal best!  [BTW, an AHI of 0.2 means that I had fewer apnic episodes all night than I did in just one MINUTE before CPAP!!!!!]. 

So what I learned is that the Swift pillows deteriorate—they only last a month.  I had been reading that on the support boards, but I didn’t recognize it happening before my very eyes (nose?).  I have also been pretty aggressive in cleaning the old pillows.  I started out with a vinegar rinse until someone pointed out to me that the manufacturer recommends against using vinegar.  So I switched to soap and water every day, and when there were still drops of water between the pillow layers after air drying all day I was getting in there pretty roughly with a Q-tip to clear the water out. 

Bad ideas.  I’m going to treat this new pair much more gently, especially because I may have to wait until July for new pillows.  I wipe the condensation out of the inside with a microfiber cloth in the morning, then shake the condensation out of the inner layer and leave it pillow side down to drain on a tissue all day.  I’m only doing a full out washing every few days unless they get icky—and they really don’t. 

 Now I’m going to have to see if I can get Kaiser to help me get new pillows every month.  The GPE is nice, but it’s a bit of work and postage, and I dread getting a set from someone who swears that they don’t smoke or use fragrances, only to find out that they do.  Both are very big asthma triggers for me. 

 Kaiser claims to follow Medicare guidelines for equipment replacement.  I don’t have Medicare, but I’m going to assume that’s Kaiser’s formulary for replacement schedules, and Medicare does allow new pillows every month.  So maybe I can get Kaiser to order me new pillows every month.  I’m going to take my data card in to be read at the sleep lab, and I suspect we will be able to see a decrease in my therapy’s effectiveness when the pillows were really getting bad.  I’ve also saved the pillows so I can show the RT what happened to them. 

I suspect the main hurdle will be with Apria.  I bet they will claim that they are giving me 3 sets of pillows a month because the new masks I can get every three months do come with 3 sets of pillows—it’s just that 2 sets don’t fit.  It remains to be seen.  

Now I know what can happen, so I’ll be paying much more attention.

Hey–if you like this post or any of my others, please leave a comment to let me know.  I love positive feedback!  If you don’t like my posts, Go Away!   Nobody is forcing you to read this crap!  ;o)

Advertisements

Responses

  1. Read and enjoyed! I’m trying to learn all I can about CPAP.

  2. Thanks for the comment, Donna. Glad you’re enjoying it.

    Have you started your therapy yet? Take some time to check out my links in the sidebar if you haven’t already. Those are very helpful sites!

    • I’ve been on my therapy since May 4th and yes, I used your links mainly to the cpaptalk forum. I’m djr1215 there.

      • Hi Donna, I’ll look for you there!

  3. janknitz, you have such a way with words! LOL

    Keep these posts coming.

    It’s really hard to tell where the leaks come from, and old mask/pillow has never been my first guess when it happens to me.

    That is so cool you keep the masks that didn’t work. I have to give mine back. It’s possible the new provider does things differently.

    Oh, and I listened to some of the talk by Dr. Rapoport and found he did say he was asked to speak about the CPAP machines, not masks, so he was sticking to machines. Too bad. Wonder who chose the subject and dissed masks so thoroughly?

    Have you found where these sleep study guys publish their papers? I’d like to see if I could read them, maybe they are interesting.

  4. Yeah, it’s true Dr. Rappaport did say that. I didn’t remember until someone pointed that out on the forum. Ooops.

    The reason I get to keep the masks is that Kaiser, my HMO, has some deal with Apria. Kaiser does all the fitting and mask stuff–they have samples of almost everything (not the Swift FX, though) and if you need to try a new mask they send you home with a few models to try. Since they are samples provided by the manufacturers, they don’t take them back to reuse, so you can keep them. I think the DME’s get tons of these samples too, but instead of letting patients try them and keep them, they resell the samples on sites like cpapacution.com.

    Apria has a sweet deal with Kaiser. They never have to talk with or touch a patient, except when they call to demand their copayments before they will send out your equipment. They mail the equipment and didn’t even want me to come to their office to hand them a check when I had to make the co-pay for the machine. I wanted to pick up my equipment and they told me that their contract with Kaiser “requires” them to mail it. Hmmmpf.

    Kaiser does all the fittings, and Apria makes a fortune off Kaiser in volume if nothing else. Because it’s Kaiser’s responsibility to do the fittings, Apria doesn’t even want to deal with returns. When it’s time to reorder supplies, I can’t even call Apria. I have to leave a message with Kaiser’s centralized DME department, and they place the order with Kiaser.

    It works for Kaiser, it works for Apria, and sometimes even works for the patients.

  5. Apria. Ur doin it rong.
    Take care of the customers!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: