“living” with sleep apnea

I have Obstructive Sleep Apnea, a condition where, during the night, my throat/airway closes up and I stop breathing.  Usually, a person notices the obstruction, wakes up, coughs and falls asleep only after the airway has reopened.  

It is the frequency and duration of these obstructions that are the key.  Right now I’m at about 15 apneas, with up to 50 seconds “toleration.”  That means my body lets me go 50 seconds before it jumps me awake.  My blood-oxygen level also drops to 60% at it’s low point, but only 1-2 times a night (doctors usually get worried if it’s less than 95%).

I am not going to say how bad that is because I’m not up to date on what is “bad” or “really scary.”  But I do know that 2 years ago, during my last battery of tests, I was at 11 apneas and 25 seconds, with a blood/ox of 75%.  My very first test, in 1997, I had 0 apneas and a blood/ox low of 80%. 

As I said, I am not saying how bad of a trend this is, but I do know that I’m 30, and that many don’t experience the effects of apnea until they are significantly older.  So I’m kind of “starting” young on this one.  Young by most any standards (I’m 30 now, but when I was diagnosed I was 18).

I have always been torn about how significant to make my OSA sound.After all, I don’t have cancer, it’s not terminal…it’s sleep.  I just don’t sleep well.  But I haven’t slept well for 12 years now.  I have not woken up feeling refreshed ever, in that whole time.  I have gone through five Continuous Positive Air Pressure (CPAP) machines, which are meant to keep one’s airway open by forced air.  I have had…5 surgeries, none of which were ever supposed to help for more than 2-3 years and in fact, with me, the timing was closer to 1-1.5 years.  I have a metal bolt in my lower jaw that aches when it gets cold outside.  

The CPAP machines are the ideal solution – you can’t beat a machine that keeps your airway clear.  However, I have never tolerated them and the mask that attaches to my face well.  I roll around too much, and eventually I take it off.  The “standard” for benefit is 4 hours per night, and I have had three such sessions in the last 30 days.  That’s not a good ratio.

I have changed my entire lifestyle to accommodate the issue, since the CPAP has never worked that well.  I rarely drive anymore, and have had to pull over to close my eyes as recently as last week.  I am very careful about that.  Every time we’ve moved, I have the requirement that we be close to a train station to get to work.  Makes our options rather limited.  I don’t go out at night other than something that is fairly low energy (movies – yes, concerts – no, which is a big change from when I was an undergrad).  And if I do stay up later than midnight one night, I take it easy for up to a week afterwards to recover.

So…it’s a big deal in my life.  It has caused major problems.  And at some point, I know that I will face the possibility of cardiac arrest as my body gets used to longer and longer periods without breathing.  This is a reality.  And it’s a scary one to accept.

Comments (2)

  1. awdang

    Hey Kaiyen,

    I don’t know of a cure. I know my mom has had sleep apnea for years (not sure when she actually was diagnosed with this). All I can do is say prayers for you that you are cured of this. A good night’s sleep is important. I pray that you get at least 4 hours tonight!



  2. Debbie S.

    Wow – I know several people with CPAP machines and they work great for them. So sorry you have to live with this.

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