Posted by: Jan | July 21, 2010

The Swift FX

I finally scored a Swift FX mask.  It sure wasn’t easy.

As much as I liked the Swift LT for Her, there were still problems.  I was still having eye leaks that were driving me nuts.  No matter what I did, the bed pillow had a tendency to dislodge the right nasal pillow just enough to cause a teeny, tiny leak.  That leak traveled up the side of my nose and right into my eye.  So in the morning, I’d often wake with a swollen right eye that was blurry and leaky for a while.

I’ve already posted about the nasal pillow quality.  As the pillows deteriorated, the leaking would become worse.  The Swift LT was not a bad mask at all, but the problems were becoming annoying.

Many people raved about the Swift FX.  I asked the sleep lab at Kaiser if I could try one, but they claim “it’s not on their formulary”.  I’m not sure I believe them–they probably pay the crappy DME a set amount no matter what mask, but the crappy DME may give Kaiser a really good rate on only a limited number of masks.  In fact, I’m sure that’s probably it, because I just got a new FX on my 3 month replacement schedule and I only paid $21 for my 20% share.  That means that the crappy DME is getting a total of just over $100 for the mask, which costs between $121 and $130 online.  The crappy DME probably sells them for $170 or more if you are unfortunate enough to be paying out of pocket.

The Swift FX’s retail for around $127 online, a price I just could not afford.  So I started checking out cpapauction.com.  I watched for a while and brand new lab sample FX’s were selling between $40 and about $100.  I decided that the most I could pay was $45 plus shipping.  But it wasn’t easy to find one that met my criteria–LOTS of people are looking for FX’s online.  There were some periods where there were no FX’s at all, and other periods where the bidding was fierce. 

There’s an online company that sells on cpapauction.com and their starting bid is equal to the full price on their website.  One Bozo actually bid that much, skewing the average price for Swift FX’s on that site for a while.  Grrrrrr!  Another seller had a secret reserve that was so high that nobody was “winning” his mask, so he listed it over and over again.  It took a lot of waiting and watching until I found one at a price I could afford and not too much competition for it.  I think I ended up paying $46.50 plus $8 for shipping.  Yahoo!  I could live with being $1.50 over budget. 

The seller was wonderful and the mask arrived quickly and I was so excited to finally get my hands on one.  It was a lab sample, so it was missing the fancy bag (no big deal) but it had all four sizes of nasal pillows.  The small fit perfectly, a little better than the Swift LT for Her pillows fit me actually–NO leaks!  I think part of the reason is that the pillows wrap around your nose a little better, which also keeps the eye leaks away.

I was amazed that the headgear was soft.  I expected the silicone headband and face straps to be a little stiffer, but they are soft and mold to the contours of your face.  The headgear is very comfortable and there are wraps so that the silicone straps don’t leave permanent divets on your face.  It’s a good thing my head isn’t a little bit smaller, becuase I have the headgear on almost the last notch.  The nasal pillows are also surprisingly soft, too. 

This mask is a study in simplicity, with very few parts that don’t take up a lot of real estate in your face.  It’s very easy to remove the nasal pillow for cleaning, and no minute adjustments that can get out of whack. 

Everyone raves about the soft, flexible, short hose that connects the nasal pillows to the main hose.  It IS very flexible, but it’s actually the one flaw to the mask for me because it is HEAVY.  The pillows and the headgear are so soft, that the weight of this flexible hose tends to pull the nasal pillows away from my nose–I find that kind of annoying.  Tightening the headgear helps, and because everything else is so soft and light, the tighter headgear doesn’t bother me too much.  I also sewed velcro hook tape inside the back strap of this mask to keep it from slippling, just like my LT fix (thanks to UFO13 for that great idea!)

The other problem is that I havent’ found a good way to secure the flexible hose to the headgear, so the hose can hang across my chest and I DO NOT LIKE THAT.  It takes being a little more awake and conscious that I was with the Swift LT simply to turn over, since I have to manage the hose.  The best way to turn on my back or side without the hose snaking across my chest is to tuck it under my right arm.  That hose turns out to be my one major criticism of the mask–if only they had made it lighter!

So I’ve been wearing the FX for about a month now, and it suffers the same nasal pillow quality problem as the LT.  Within a month, the pillows start to soften up and leak more.  I looked on the package, and these pillows were made in China.  There are some reports that pillows made in Australia hold up better, but I’m not sure how I’ll ever get them.

Pillow replacement is a challenge.  I’ve taken advantage of the Great Pillow Exchange on cpaptalk.com to trade out the pillows that don’t fit me.  That gives me 3 extra pillows.  In addition, I posted offering to trade  a homemade hose huggy for small size FX pillows.  I didn’t get any takers on that, but one person offered to send me 2 small pillows for $15, postage included.  I jumped at that as they cost $22 each on cpap.com.  (If you’re reading this and have small size FX pillows to trade or sell, please pm me at knitwitatsonicdotnet (be sure to replace the at and dot)).  So that gives me 5 replacement pillows, and then we’ll see if the headgear is holding up or if it’s time to start trolling the auction site for a new one. 

To sum up, using the FX is the next best thing to sleeping naked if you are an xPAP user.  It’s not perfect, but it’s pretty darn good.  I sleep SO comfortably with this, and my AHI’s are awesome.  I had 0.0 AHI on the night of July 4th.  Whoo Hoo!!!

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Posted by: Jan | June 19, 2010

The Importance of Having Data

On the Sleep Apnea Support Forum this week, I’ve been watching and responding to a thread called  “severe sleep apnea patients!! Need help” located here.   A poster named “Sister” posted that she was empowered by what she was reading in the forum, and went exploring to find out if the Resmed Elite she’d had since 2006 (four years!) was data capable.  To her surprise, it WAS data capable, although her DME provider tried to deny that fact.

The DME provider tried to tell her that accessing the data would void her warranty.  What a load of hooey!  First, accessing data does NOT void any warranty.  Secondly, these machines only carry a two year warranty, already long-expired.  Thirdly, Sister was only trying to access patient data anyway, not clinician’s data.  There was no risk of her accidentally changing the settings or causing any problems to the machine.  

The real shame of this perfidy is the fact that once Sister did access the data she learned that her AHI was 17.5.  It should be well below 5.0.  So this means that for who knows how long, she has been getting very poor therapy.  I would also assume that there has been no follow-up from her sleep lab physician or DME in the past four years, because clearly nobody looked at the data and noticed there was a problem. 

She should have been instructed from the beginning how to check her data, so that when her AHI’s crept up to an unacceptable level (assuming they were ever within an acceptable level), she could have consulted with her sleep professionals to improve her treatment.  Instead, for as much as four years, she has been receiving sub-optimal therapy.  On CPAP, she was still experiencing significant OSA.  

This really makes my blood boil!  The insurance company may have looked at compliance data, but probably cared less if their investment of a few thousand dollars was EFFECTIVE for the patient.    The sleep lab that failed to follow-up enjoyed her money, but failed to make sure that the treatment worked for her and continued to work for her in the long term.  The DME has probably been enjoying her money for replacement supplies and the initial purchase, but they never made any effort to see if the treatment was working for her.  Perhaps  Mr. DME was too stupid to even realize that Sister’s machine was data capable (if he was smart, he could have charged for downloading the data to report to the sleep doc on a regular basis), rather than what he seems to be—a malicious liar who tried to thwart Sister’s efforts to take control of her own treatment. 

Folks, we on CPAP have to be our own advocates.  The reality is that WE are the only ones who care if we are getting effective treatment.   Clearly the insurance company, sleep professionals and DME don’t care unless it lines their pockets.   WE are the only ones harmed by ineffective treatment.  But without data, what can we do?    How can we know, and how can we advocate for ourselves? 

XPAP patients must have and use data capable machines!

Posted by: Jan | June 9, 2010

Sleeping Well is What it’s All About

Boy I’m having some good nights of sleep!  I’m not sure if it’s the brand spanking new nasal pillows or the higher pressure ceiling I have now, but I am sleeping through the night and waking with that incredible “floaty” feeling again. 

I am alternating one set of new nasal pillows and my “old” ones that are about 3 weeks old in terms of use.  The new ones don’t seem to do that little leak up into my right eye like the “old” ones.  When I wear the old pillows, I can almost picture this annoying leak, like the cigarette smoke from my mom’s cigarettes, making its leisurely, curly way up my facial contours and right into my eye.  I feel this little trickle of cold air, so I know it’s there.  When I wake up in the morning, my right eye is often swollen half shut and leaky.  But I’m still sleeping pretty good—no 4:30 a.m. wake up calls this week.

When I went to the sleep lab last Friday the RT decided to push my top pressure up to 15, because at 13, the graphs showed that I was “bumping the ceiling” pretty consistently.  My numbers were fine, but it may be making a difference.  My 90% pressures have gone up on average from 11.6 or 11.8 to 12.2, and I seem to be sleeping really well.  Maybe when I hit that threshold it was waking me or causing my body to panic before, although the numbers didn’t show any problems. 

The best part now is waking up—it’s like taking the best recreational drug out there (not that I would know ;o).  I wake up before I have to, usually when my husband gets up to do his morning workout (an uncivilized 5:30 a.m.). Sometimes I drift back to sleep until a little after 6.  Before CPAP, I slept like the dead in those last few morning hours, and when my alarm went off at 6:45 it was always a shock. 

 I lie there, feeling the cool, gentle flow of air in my nose, and feeling utterly and completely . . . comfortable.  Even the sound of the mask is muted—I can always hear the airflow at night when I go to bed, but I have to strain to hear it in the morning (why???).  It feels so GOOD.  I like lying there savoring the feeling.  I know once I start moving around I’m likely to have leaks or hose issues, so I just lie there for a time, until I get restless and decide it’s time to get up–always before my alarm these days.  I would probably get up even earlier, but I have to wait my turn in the shower, so there’s no point in getting out of bed. 

 This is what it’s all about, folks.  That incredible feeling when I first wake is what keeps me coming back for more. I’m 100% compliant with CPAP and this is why.  Good mask, good settings, good machine. 

Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz . . .

Posted by: Jan | June 6, 2010

An Embarassment of Pillows

Even though the data showed that my therapy is spot on and sleep apnea is not responsible for my 4:30 a.m. wake up calls, I decided not to cancel my appointment with the sleep lab to talk about this issue.  We agreed that nothing is showing up in the data and I need to pursue other possible causes with my primary care doctor.  But, a few things were accomplished:

1.  I am still waking several mornings a week with a swollen and weepy right eye because of leaks.  The RT suggested I try other masks.  She fit me with an Optilife.  At first it seemed to seal really well, but she wanted to show me the “nose cup” and when she put that on it was a no go.  There was no way to seal that nose cup.  So we put the pillows on again, but this time could not get it to seal.  And I hate the chin thing—you sort of need to have a chin to use it, and I don’t have a chin.  The chin thing ended up riding up below my lower lip like a British soldier’s helmet.  Because she tried it on me, she couldn’t use it again and gave it to me to take home to play with.  Even with tweaking, this just isn’t going to work.  I can’t see how it works for almost anybody?

 2.  Plan B is to have me try the Opus 360, but they didn’t have any samples in the office.  The RT promised to order some and call me when they come in.

3.  Meanwhile, she gave me a handful of size small Swift LT pillows to take home.  Woo Hoo—now I have plenty and don’t have to feel like I must treat them like delicate eggshells anymore.  The advantage was immediately clear.  I took a brand new one to sleep in Friday night and did my usual wash and drip dry thing Saturday morning.  Saturday afternoon I decided to go for a walk, but as I was putting my shoes and socks on I realized I was sleepy (even though I slept almost 10 hours the night before!).  So I just got on the bed, put my old nasal pillow on the headgear, and had a lovely nap, even though the other set of nasal pillows wasn’t completely dry yet. 

 Ordinarily, I would have slept in the recliner in the t.v. room without the cpap (too embarrassing to move it out there with a snotty teenager in the house).  In the privacy of my room I got a nice nap and felt very well when I woke.  I was still tired and ready to go to bed at bedtime and slept well for many hours again (except for a horrible nightmare about my husband getting a head injury!). 

 Looking at my data, I asked about the fact that my pressures often bump against the top limit of 13, even though I’m not having any apparent ill effects from that.  The RT suggested setting the top to 15, though she was concerned I wouldn’t be able to “handle” it.  I told her I’m pretty sure I’d be fine at 15, so we set it there.  I don’t know if it’s making any difference, but I seem to be sleeping a little more comfortably.  It did “blow out” the nasal pillow a little Friday night but I woke just enough to fix the leak and go back to sleep. 

 It’s funny, but having all those extra nasal pillows makes me relax a bit.  I don’t have to worry about getting down to just one terribly leaky pillow that would make me miserable.  As I get new mask sets every three months, I’ll make sure to trade out the two that don’t fit and keep a good stock on hand.  One more step in the “fix it and forget it” direction.

Posted by: Jan | June 3, 2010

I’ve got data!

I couldn’t stand it anymore, so I got Encore Viewer software so I can see my data.  I HAD to see what’s going on. 

For the past 9 years, I thought I was in “peri-menopause”.  Since my youngest was born, I wake most days at 4:30 a.m. sweating profusely and with my heart pounding.  Every negative thought I can possibly think of runs through my head, and I often cannot go back to sleep for hours.  Sometimes I just get up and DO something, rather than ruminating over everything that’s wrong (or not) with my life for hours.  When I get good and cold again, I can return to sleep, often just a short time before I need to get up for work.

So I developed some really rotten sleep habits to thwart my 4:30 a.m. “wake up calls”.  One trick was to go to bed REALLY late–1 or 2 a.m.  When I do that, my chances of sleeping through until my alarm at 6:45 are pretty good.  But, the sleep debt was not good, and I would be very tired during the day.  After a few days of this, I’d be exhausted and go to sleep around 10 p.m. for the entire night.  Back on a normal schedule the next night, the whole cycle would start again.

I had a very hard time adjusting to CPAP, and the first weeks weren’t good.  But finally I hit that sweet spot, where I could sleep most of the night, waking only to manage the hose when I turned over, then quickly back to sleep.  Hey, no hot flashes!

When I switched to the Swift LT mask, hose management was no longer an issue.  I already suspend my hose from my wall-mounted swivel lamp.  Now, with the little hose attached to the top of my head, I didn’t have to physically move the hose to turn on my back or left side.  I started sleeping all night, waking to a wonderful, delicious calm. 

I realized that the 4:30 wake up calls might actually have been OSA.  When I was paralyzed in REM sleep and my airway was obstructed, my body had to throw everything it could at me to wake so I could breathe.  A big hit of adrenaline could explain my symptoms.  So with CPAP, the 4:30 wake ups seemed to be blessedly gone. 

Until a few weeks ago . . . 

I woke with a BIG hot flash.  Heart was pounding, sweat was soaking my nightgown and bedding.  Just like old times.  Rah . . .

The next night, it happened again, not quite as severe.  And the following night, too.  Why was it back???

That was around the time of the Great Pillow Exchange, and with my new, firm nasal pillows, I had a leak-free, hot flash free night.  Aha!

But as the pillows soften up, the hot flashes are returning to a lesser degree, now several nights a week. My first guess was that my mask was leaking too much. It sure felt like it.  Sometimes I wake with a swollen eye from the constant barrage of air leaking all night. 

 I was certain I’d find a lot of leakage in my data to explain it.  Nope, data shows low leakage all the time.

Or, while my AHI’s are very low (averaging about 0.5 over time), I thought perhaps at least once a night I  had a “big one”  (obstructive event) that my machine couldn’t handle, and that was causing the wake up call.  Nope, the data shows NO obstructive apneas (none, zip, zilch!), a very few scattered centrals (not on this particular sample) and periodic breathing (not enough to register 1% on my machine’s LED screen).  It does show some significant RERA’s and Vibratory snoring when the pressure goes up.  I don’t know why I have those, but that’s not likely to cause the hot flashes.  So I just don’t know.

My theories are all shot to hell, and I’m back to peri-menopause, year 10.  YUCK!  I’m tired of that.  I wanted OSA to be the cause and CPAP to be the cure, but I guess not.

I do have an appointment at the sleep lab Friday to look at all this, but I’m guessing they won’t have anything to tell me.  DARN!

But, I will say how great it is to be able to look at my own data to see what the heck is going on.  I don’t feel like I’m flying blind anymore.  I feel like I can spot a problem that needs attention before it gets big, or reassure myself that everything is going well.  I feel like I can steer the ship–with the help of medical professionals.  Having that control makes this all the easier for me.

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)

Posted by: Jan | May 16, 2010

Mask Tweaks

Even the most comfortable masks have problems.  I feel like the mask I’m in now (Resmed Mirage Swift LT for Her)  is pretty comfortable overall,

but there are still problems. . .

1.  Leaking:  The nasal pillow idea is a nice one.  The nasal pillows are designed to sit against (not in) your nostrils and the latex outer pillow should seal against the skin of your nostrils while the pillows send air directly into your nose. 

The theory is that you choose a nasal pillow slightly larger than your nostrils, so that there is a good seal against the skin around your nostirls. The air flow inflates the pillows and pushes them up against your nose, so they don’t have to be tightly jammed against your nose.    Unlike a face or nasal mask, however, there’s not quite the same degree of seal.  If the nasal pillows aren’t exactly the right size, or if you move around, the seal is easily broken.  A noisy, cold, and uncomfortable leak occurs. 

All of my tweaks are NOT original.  I got a lot of them from here and here, and others from the two CPAP support boards I frequent:  CPAPtalk.com and the Sleep Apnea Support Forum (both are linked in my sidebar). 

There are some tricks that people swear by.  Some people use latex safe (no petroleum products or alcohol) gels or lotions (like Ayr gel or Lanolin cream)  to give just enough tackiness to get a seal around each nostril.  I found that made my nasal pillows leak more, so it didn’t work for me. 

On further reading, I found one of the causes of leakage was that the nasal pillow walls don’t hold up for very long.  Someone found that by placing a rubber O-ring around the neck of each pillow, it helps the pillow stand up more firmly and seal against the nostril, like this:

It really works!   For weeks I’ve been having trouble with my left nostril leaking and this has been working great.  Now the right one is starting to go, and I will put one on the right nasal pillow tonight.  I use size small LT  pillows, and they need a 5/8 X 7/8 X3/32/ #9 O-ring.  Larger or smaller pillows will need slighly larger or smaller O-rings. 

2.  Strap riding:  The other vexatious problem I was having was with the back strap of the Swift LT for her.  This provides stability for the entire mask and is designed to sit just below the occipital bone on the back of your head.  BUT, when you move your head against the pillow, the strap, no matter how tight, shifts.  And when the strap is too tight, the nasal pillows push through your nose up like a pig snout.  That hurts!

So some friction is needed to stop the strap from slipping around.  People with long hair can tie it in a pony tail and use their own hair to hold the strap in place.  But I have short hair.  Very short hair in back. 

After trying a few suggestions, I came across a tip to put the hook side of velcro tape on the inside of the back strap.  The people who tried it used sticky-back velcro and stapled it on for added security.  YEESH!  I certainly don’t want staples anywhere near my head or bed linen.  But sewing works.  I got NON-sticky velcro (it’s a bugger to sew sticky back velcro and it ruins the sewing machine needle) and sewed it to the back strap.

VIOLA!

It sounds like it would be uncomfortable, but it’s not.  It works very well, the strap does not shift, the pillows stay in place against my nostrils and do not leak as much. 

Oh, and one invention is mine alone.  I guess I have a small head, so the top straps were long and often getting caught and twisted when I put the mask on.  So I made little guides that hold the straps in place out of cloth.  Those are the kind of frayed things you see in the foreground. 

These are little, simple things, but they make a world of difference in my comfort and ability to tolerate this therapy.

Posted by: Jan | May 16, 2010

What if Fish Designed Beds???

So, what if fish designed beds? 

What do you think it would look like?  What do you think it would feel like?

The reason I ask, is that I think that people who design CPAP interfaces–masks especially and machines to some degree–probably don’t use CPAPs.  They think they know what might work, but they really have no idea.  Having people who don’t use CPAP design CPAP machines and interfaces makes about as much sense as asking fish–who never sleep lying down–to design beds. 

What got me thinking about fish designing beds was a series of videos posted about here:  http://www.cpaptalk.com/viewtopic/t52138/Vids-of-Dr-David-M-Rapoport-at-Manhattan-AWAKE-5510.html#p480978.  Dr. David Rappaport seems like a very smart, nice guy.  He works with Fisher Paykel to help design CPAP machines.  He clearly doesn’t use CPAP.

FP, Dr. Rappaport, and other CPAP designers and researchers are clearly concerned about a major problem–CPAP therapy is almost 100% effective when used, but the compliance rate with CPAP is less than 50%.  So fine groups of reasearchers are doing what they can to figure out why the compliance rate is so low, and what to do about it. 

CPAP machines can make or break CPAP therapy.  They need to provide optimum pressure to keep your airway open.  As a general rule, CPAP machines do that very well, but they don’t always do their job comfortably.  That is–the way the machines deliver pressure can make the user uncomfortable.  For instance, straight CPAP machines deliver a steady and constant pressure.  That’s great for getting the air in, but I can tell you it can be uncomfortable to breathe out against a steady pressure.  Particularly if you have asthma as I do–it’s a lot of work to breathe out against a pressure setting of 13 or 14 cms of H2O (CPAP pressure is measured in centimeters of water displaced by the pressure). 

So they invented CPAP machines that drop the pressure when you exhale, so it’s easier to breathe out.  For certain brands of machines this is called “EPR” (Exhalation Pressure Relief), Phillips Respironics who makes my machine calles it “flex”.  Another thing that’s uncomfortable is to have 12 or more cm’s of H2O pressure blasting your face when you are wide awake and clearly breathing on your own.  So manufacturers have come up with automatic features, that start you off at a low pressure when awake, and then increase the pressure as your airway resistance increases, then lower it again as your airway resistance decreases.  This is more comfortable.

But, to Dr. Rappaport and other researcher’s surprise, features like EPR and flex do NOT increase CPAP compliance.  Their studies sounded a bit small, and, according to Dr. Rappaport, “patients are unable to articulate what it is that makes them uncomfortable” (they should have asked ME!), so they have to guess.  And they guessed . . .

WRONG!  The latest theory is that there’s no reason to have CPAP on at all if you are awake.  So they are trying to develop a sensor that will determine when you are awake, and either drastically dial back the CPAP pressure, or–Dr. Rappaport’s preference–turn it off altogether.  That, they have decided, will increase patient comfort and compliance with CPAP.

HUH????????????

Ever try breathing in a CPAP mask with little or no air coming in?  It’s possible.  Some masks have “fresh air” valves that let fresh air in.  At the very least, you can breathe in from air that comes back in the vent holes when air isn’t going out.  But it’s not very pleasant.  It feels like you are suffocating, even though you aren’t.  And a lot of us with OSA have at least a touch of anxiety and claustrophobia (probably caused by the OSA in the first place).  Even when my CPAP is on, I’m not very comfortable at 4 cm’s, which is the lowest possible setting.  I have my minimum pressure set at 9 cm’s for comfort.  Below 9, I feel like I’m not getting enough air.  And Dr. Rappaport and friends want the CPAP to stop blowing at all if I’m awake (which is when I’d notice it–hello!)???

I watched all of the available segments of his presentation, and throughout it all, I wanted to scream one thing at him:

IT’S THE MASK, STUPID!!!!!!!!!!!!!!!!!

Clearly, this fish has never slept in the bed of a person with OSA. 

Compliance with CPAP has a little to do with the machine.  If the machine is not set correctly for your needs and comfort, if it’s too noisy, or the humidifier isn’t working right, you might not like and use it.  But for the most part, I think the machine manufacturers have those issues solved.  Whether you use CPAP, APAP, SVAP, or BiVAP, as long as it’s the proper delivery system and setting for you and the machine doesn’t drive you nuts with extraenous noise, it’s going to be OK. 

But then they strap this chunk of plastic on your face.  The chunk must seal for the CPAP machine to work.  The chunk must vent CO2 properly.  It’s heavy, it’s hard, it hurts, it’s too tight, or it’s too lose and leaks.  It makes you feel claustrophobic.  You can’t open your mouth or talk or scratch your nose.  People look at you in this contraption and run screaming from the room.  The vented air blows on your partner.  The mask makes noise.  It’s AWFUL!!!!!!!!!!!!!!  And they want you to wear this every time you sleep, every night, for the rest of your life. 

When is see the way masks are designed, when I try them and I hear other’s experiences with them, I can’t but help think that they were desinged by people who don’t wear CPAP masks and use them every night of their lives.  The bottom line is that masks look terrible, they are uncomfortable and scary (claustrophobia), they hurt and leak and make noise and feel awful, they interrupt the sleep you are supposed to be improving on CPAP and they make you miserable. 

THAT, dear researchers, is why compliance stinks.  Make a mask or series of masks that fit great over a broad percentage of the population, don’t leak, aren’t heavy, don’t make you look like an alien from another galaxy, don’t cut you off from senstions of the world,  and are incredibly comfortable in any sleeping position, and complaince will increase. 

Until that day, don’t waste your time tweakiing CPAP machines to make us feel like we are dying!!!!

Posted by: Jan | May 6, 2010

My Shoulder Doesn’t Hurt

My shoulder doesn’t hurt. 

What does that have to do with CPAP?

 Probably nothing, maybe everything.

 If you read personal stories about CPAP, you will find people who have had veritable “cures” of their arthritic and fibromyalgic pain with CPAP. 

 There’s no science to back this up—yet—but I’m hearing doctors aren’t necessarily ruling this out as a benefit (maybe because they want you to try CPAP for any reason you will to get the other, documented health benefits???).  Yesterday on the Dr. Dean Edell radio show, a caller asked if CPAP could have anything to do with the fact that pain in her arthritic knees has resolved.  While his primary opinion was that it may have to do with less tossing and turning, he didn’t totally rule out the positive effect of better oxygen profusion having something to do with it. 

 There’s a lot of anecdotal  evidence out there that CPAP does reduce chronic pain and inflammation, so it will be interesting to see if science eventually backs this theory up.

 As for me, I have chronic pain in my left shoulder primarily. 

 I was 41 when my youngest daughter was born, and pregnancy is tough on an “old lady”.  Actually, I LOVED being pregnant at that age.  Your body secretes a hormone called something like “relaxin” to help soften the pelvis for the baby’s trip through the birth canal—and it actually works all over to relax your joints.  A lot of the aches and pains I had before pregnancy (and which came back with a vengeance after pregnancy) were gone during pregnancy.  They ought to bottle up and sell that hormone (as long as its side effects don’t include frequent urination, heartburn, weight gain, heat intolerance, stretch marks, and all the other lovely “side effects” of pregnancy ;o).    

I probably had a little shoulder pain from overuse and misuse in the rather physical job I held at the time, before pregnancy.  But shortly after my youngest was born, I had bilateral frozen shoulders—extremely painful and debilitating.  The right shoulder was worse than the left at the time, and it got all the attention in therapy because I had almost no movement in it at all.  Eventually, the right shoulder improved, but the left shoulder, which was neglected in therapy and over-used to compensate for the right one, has continued to cause me pain for all these years since (my youngest is 9).  It hurt all the time, and worse some times than others.  Nights were especially painful, trying to find a comfortable position for the shoulder in bed. 

So, I started CPAP.  At first, everything was worse.  As I struggled with various masks, I’d have to assume awkward sleeping positions and not move all night, just to prevent leaks.  I’d wake up stiff as a board and in pain all over, particularly my neck, back, and left shoulder. 

My back was becoming a problem.  I know the drill, so I put myself on a two week course of Naproxen and then tapered off of it slowly.  Usually I get adequate, but not total pain relief with Naproxen.  And at the end of the two weeks, my back was still a little sore.  But my shoulder was wonderful.  And three weeks later, I’m still not having shoulder pain—not a twinge.  It’s a very nice thing.  (My back is better, too). 

Occasionally I get “vacations” from pain.  When my respiratory problems get dire, they put me on Prednisone, and my favorite side effect is a month or so of no shoulder pain.  Sometimes I’ve allowed the doctor to inject my shoulder with cortisone and I get a similar respite.  But most of the time, I just live with a lot of pain.  A LOT of pain!

So was it the good course of Naproxen?  I don’t know.

The weather (no matter what medical science says, my joints ache more in damp, cold weather!) is better, but last week it was rainy and cold.  I often have less pain in the warm summers (but notice an increase on our foggier nights and cooler mornings), so the change of seasons might be a factor.

 Or, it could be a coincidence.

This is a short time so far—I’d say the jury is still out.

But if it does turn out to be another benefit of CPAP, I’ll take it–more incentive to put up with the discomfort and inconvenience.  Works for me!

Posted by: Jan | April 30, 2010

99 Years????

I’m lusting after a CPAP mask (Swift FX) that my provider says is “not in their formulary”.  Not sure I believe them, but also not sure I have a choice.  Since I have a good working mask only a month old, I don’t have any standing to push on this issue.

 So I’m trolling a CPAP auction site to see if I can get one myself for the little money I can afford to pay.  So far no go—I see these masks all the time on the auction site, and about half of them don’t sell for the minimum asking price which is more than I can pay.  I’m watching to see if they come back at a lower price, or eventually go out again at a higher price.  It’s curious where the sellers are getting all these masks—some people have a history of 250 satisfactory sales.  These aren’t patients selling masks that didn’t work out–I think that DME employees are doing some augmenting to their incomes.  But that is not the subject of this post. 

Anyway, to buy online from one of these sites, you must have a prescription on file.  So I asked for one from my provider.  DME prescriptions include a statement of “duration of need”, and in that box, the RT wrote “99 years”. 

99 years . . .

 What a depressing thought. 

I like my CPAP a lot now.  That good feeling is starting to remain with me for longer and longer periods each day.  It’s only when you feel so good that you can recognize how rotten you were feeling, and believe me, I was feeling ROTTEN.  I was in this constant state of panic, and it was interfering with everything in my life.  But I didn’t even know it, until I got to see what life is like when you don’t feel that way every moment.  So, CPAP is becoming like heroine to me.  I almost can’t wait to go to sleep at night, because so many mornings I wake feeling so good, like taking some really cool illicit drug.  And the best part is that there is no crash on the other side.  I feel good, or I feel not so good, but I don’t go nuts, or have hallucinations, or cravings or any of the downside of an illicit drug high. 

But, 99 years?

I don’t know about that. 

Two months ago I could not picture using CPAP every night for 2 months, let alone the rest of my life.  Now, I can picture wearing it tonight, perhaps tomorrow, and on into next week, just to get some of that “feel good” drug it gives me. 

99 years, I’m not so sure about.

 Yesterday, on Good Morning America, they featured “comfort products” for sleep apnea on the health segment http://abcnews.go.com/Health/video/slee … s-10511936, and talked about sleep apnea in general.  The person interviewed talked about the fact that a parent had sleep apnea, that it’s often hereditary, and 8 of her parent’s 9 siblings had been diagnosed (with a strong suspicion that the 9th sibling had it as well but refused to wear a mask).  In addition, she stated sadly, the family believes that her grandfather, father of the 9 siblings had sleep apnea, too, and he “died in his sleep”.   

Hold on a minute. 

 “Died in his sleep”?

 I don’t know about you, but I WANT to die in my sleep.  Will CPAP just make sure I’m awake to suffer whatever kills me?

 I know CPAP will reduce the things that will kill me.  I’ll probably live longer.  But will it be quality life? 

 Not that living feeling so rotten could be called “quality life”.  It wasn’t THAT horrible, but I do like the way I feel now, better. 

 And, no, of course I will not abandon my CPAP for the remote possibility that I might be able to die in my sleep, but it does give one pause.

I realized early on that I cannot think about CPAP for the rest of my life.  I can only think about it one night at a time (and during some of those awful first weeks, it was more like 10 minutes at a time).

So I will wear my CPAP tonight.  Beyond that we will see, though I most likely will.  I can live with tonight, but not 99 years!

One night at a time . . .

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