Posted by: Jan | April 24, 2010

Hello world!

Hello world!  This is my CPAP blog.

I’m starting here beyond the beginning of CPAP–you might call me an “advanced” beginner.  Eventually, I hope to talk about those first few nights and weeks of CPAP to help any newbies out there, but for right now, I’m starting where I am.  This is MY place to rant, whine, rave, expostulate, and say whatever I want to say.  Come along for the journey if you dare . . .

I have been on CPAP about 2 months at this point.  I’m just now getting to a place of acceptance where I can put the mask on at night without thinking about it too much and just go to sleep.  It has been a long, hard road to get here, and the journey is just beginning.

It was no surprise to me that I have sleep apnea, although the severity was a bit of a shock.  I come by it honestly–my mom snored like a jet plane.  I remember having to share a hotel room with her one night and getting NO sleep at all.  My snoring was getting so bad that my husband left our bed to sleep on the couch most nights, and the kids complained that they could hear it from their bedrooms behind two closed doors.  Sometimes, the sound of my snoring even woke ME.

Why do I have sleep apnea?  I am obese, and of course, that’s the immediate thought in everyone’s mind when the topic is mentioned (and probably the reason a lot of Obstructive Sleep Apnea (OSA) sufferers are too embarrassed to talk about it to others).  I cannot deny it is a contributing factor.  But I don’t think losing weight would make my sleep apnea go away. (No, this doesn’t mean I won’t try to lose weight anyway!)

I have Noonan’s Syndrome.  Noonan’s syndrome is an autosomal genetic disorder that affects many systems of the body.  Most commonly, it causes congenital heart defects, and I have that.  But it affects many other things, including the skeletal system and the formation of the facial structure–facial dysmorphisms.  So, among other things, I have a very small lower mandible (micrognathia), a very narrow palate, and a very narrow airway.  I also have a large, short, thick neck (webbed) related to the NS.  Oh, and low muscle tone. These factors are all contributors to OSA.  I’m pretty certain my mom had Noonan’s Syndrome, albeit a very mild expression, and she and I share the same facial features.  Thanks, Mom.

As does my youngest daughter, who has Noonan’s as well.  I’m worried about her, though we have a great orthodontist that understands some basic things like pulling teeth to make room in her mouth is the absolute WRONG approach.  She has already been through one phase of orthodontia to widen her palate with excellent results.  I think she’s in good hands, and at least we know to look out for OSA for her.

One of my favorite bloggers about OSA also has a YouTube! channel–he’s here on WordPress as CPAP Choice, and his YouTube! channel bears the same name.  He likens the narrowed airway in OSA to trying to breath through a soda straw all the time, and that is an apt description.  Every time a new dentist, doctor, or dental hygienist looks in my mouth, the first comment I get is, boy, it’s NARROW in there.  I tell them they get to say it once and then they are done.   It is what it is.  It ain’t gonna grow!  And I’m damn tired of feeling bad or guilty about this–it’s NOT my fault, I can’t fix it, so just shut up!

All that said, the results of my sleep study were surprising.  I have Kaiser, an HMO (and believe me, you will be hearing more about that later!) and they do everything–let’s just say–the “most expedient” way possible.  So they do primarily home studies.  That’s not to say they do a poor job.  They use a state of the art device that attaches to just two fingers and measures sleep states, blood pressure, oxygen levels, apneas and hypopneas, etc.  It’s pretty sophisticated technology (sorry, cannot recall the name of the device).

A word about home testing like this.  Some people turn up their noses at home testing because it’s not “as good” as sleep lab testing.  And for certain, very specific issues, that’s probably true.  But do a search on the web from the patient’s perspective on sleep lab testing, and the majority of things you will find are horror stories about how awful it was to be hooked up and watched like that, how uncomfortable and unnatural, how poor staff could be about working with them, how many people refused to go or walked away in the middle of the test because they hated it so much.

That would have been me–I would have balked right at the door and never gone in for the sleep study.    Truthfully, I think I’d rather risk all the bad things OSA causes (heart attacks, stroke, diabetes, sudden death, etc.) than go through a sleep lab study.  But this little machine attached to two fingers for a night–while not exactly a nice way to spend a night–was doable.  And, it got the data needed.  I think more people would get tested, if home testing like this was more available.  It is estimated that at least 50% of the people who have OSA never get tested or diagnosed.

So, the home test showed that I had 77 “events”  per hour.  That means I stopped breathing for at least 10 seconds (apnea) or breathed very shallowly(hypopnea) 77 times every hour.  Do the math, folks.  I spent more time NOT breathing than breathing.  And my oxygen levels showed it.  They dropped down to 73% for much of the night (95% or above is normal).  Here’s what the Mayo clinic says about that:  “Severe hypoxemia occurs when oxygen saturation drops below 80 percent.  Hypoxemia can disrupt your body’s functioning and harm vital tissues. In severe cases, it’s life-threatening.”  OK, well . . . that’s scary!

On some of the apnea support sites this is small potatoes.  I’ve seen people with much higher AHI’s (the Apnea Hypopnea Index, or number of events per hour, is used to measure severity of OSA)–into the hundreds and even approaching 200.  And even lower oxygen sat levels.   But a score of over 30 AHI is considered severe.  And I had more than twice that.

My local Kaiser requires you to attend a Sleep Apnea class if you’ve been identified with sleep apnea.  By the time I attended (I did this all ass backwards, a story for another day), I knew a lot about sleep apnea, but the most important thing for me was that some other people in the class were willing to share their sleep studies.

A blue line graph indicated AHI “events”.  Of the people who shared their sleep studies in the class, most of them had a graph with a few blue blips showing occasional apnic events.  A few had some small solid blocks of blue, showing a period during the night when they were having almost constant apnic events for a few minutes at a time.

I did not share my study graph with the class.  Mine consisted of solid blue blocks with the occasional, tiny, skinny white line indicating a moment when I wasn’t apnic.  I think there were 3 or 4 skinny white lines.  The rest was absolutely solid blue.

Scarier.

By the time I saw the sleep study, I had already been on CPAP for several weeks, but if I hadn’t been willing to start it before, that would have done it.

So, here I am.  And I have a lot to say about OSA and CPAP therapy.  And this is where I’m going to do it.  Fasten your seat belts, we’re in for a bumpy ride!

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Responses

  1. janknitz
    I think this Blog is an excellent thing to do! I hope that you can be of help to the new commers to the PAP world! I am a strong advocate of use the PAP treatment for Sleep Apnea! At one time I was pretty out spoken on the support forum in my earlier days there! Anyway I know that you are still a bit of a newbie to this Sleep Apnea CPAP Adventure, but it appears that you are doing well! On the forum I alway tell everyone that you need to have plenty of Patients, Determination & Persistence, and Perseverance, and a good huge dose of humor to get the results you seek!!. It can take some time before the tiredness and fatigue go away, but they will! I do wish you success on your journey! Good Luck to YOU ..White Beard

    • Thanks, White Beard. You are my first commenter!

      I see your posts on the apnea forum and always appreciate your wisdom.

  2. Yay, janknitz! You’ve done a beautiful job here.

    I know skinny people with sleep apnea. It’s kind of like obesity and diabetes – there is no cause and effect. People not in the loop don’t know and don’t care to know what the reality is. Not usually our problem.

    I recently met a person without sleep apnea who uses PAP technology to treat high blood pressure – and it works! I found that exciting.

  3. Thanks for your kind words, Gal!

    That’s really interesting that a doctor would prescribe PAP for hypertension when there is no sleep apnea. I wonder if that will become a trend.

    My BP’s are coming down!

  4. I really like your blog!

    I wrote you a message over cpaptalk.com, and since then, I have read through a little more of the blog.

    Very informative, yet still light and humorous, so fun to read. Thanks.

  5. Glad you’re enjoying it.

  6. I was doing a search for Noonan’s and came across your blog. My little baby girl is being tested for it. We’ll be getting the results in a couple of months. I know it sounds bad… but it was kind of refreshing to find someone on here with that condition. Although I of course wouldn’t want anyone to have it. Was curious about your life and your little girl growing up with the syndrome.
    And as far as the sleep goes….. I hope you get some long sweet sleeps in. Go CPAP!! 🙂

  7. Welcome, LS.

    We have a very active listserve at the Noonan’s Syndrome Support Group (www.noonansyndrome.org) and that the a list you will want to join. It’s a great cross section of individuals, from parents of infants like yourself to aging adults with the diagnosis like me.

    Next year in Chicago there will be a family meeting. If you can possibly make it, it’s the best way to meet others with NS and to have access to doctors from around the world who are experts in various aspects of NS.

    I’m trying to bring recognition of sleep apnea to this group, as I think the distinctive facial dysmorphisms mean that there are probably a lot of individuals with NS who may have sleep apnea as well.

    In any case, good to “meet” you and I hope to see you on that listserve–truly any question you have will be answered there.


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