I Have Marfan Syndrome

I received my CPAP machine last Thursday.  CPAP stands for Continuous Positive Airway Pressure.

So, when you have Sleep Apnea, your muscles stop working at some point during the night and collapse, preventing air from entering your lungs.  When most people start breathing again, they snore with the inhalation- I don't, I just start breathing again.  Someone I follow on Facebook says her husband (now deceased) used to have such a bad case of Sleep Apnea that his throat would actually bleed.

The therapy for Sleep Apnea is to basically blow air into your trachea to keep the muscles inflated.  I went to the Sleep Lab to be evaluated for what air pressure to use.  Luckily, I, apparently, only need a low setting.  I can't imagine what it would be like to need a high pressure setting, because you need to learn to exhale against air blowing into your nose!  The machine does have a "ramp" mode- you hit the button, and it starts off very low and takes about 20 minutes to get to the needed pressure, during which time you supposedly fall asleep.

The problem I'm having right now is that my nostrils are neither Medium nor Small... go figure.  I tried the Mask, but I have a bump on the bridge of my nose, so the Mask puts pressure on it and can be painful.  I use what are called Nasal Pillows - a larger version of what they use in hospitals for oxygen.

However, so as not to create sores on your nostrils, you need to not tighten the head gear too much- it needs to be kind of loose.  That's what I did Thursday and Friday night.  I woke up about 4 times because the Pillows kept slipping out, but when I got up I felt completely refreshed.

Sunday night I tried using the Small Pillows.  They fit in my nostrils perfectly, but the actual holes inside of them were too small, so it was very difficult to exhale.  I slept solidly through the night until about 3 AM (which is pretty much how I used to sleep before the machine), and then when I had to get up, I was exhausted.  Now I'm going to cut the holes in the Small Pillows a little bigger, see if that makes a difference, but the people who deliver the machine are going to come with a different model to see if that'll work better.

But that's how my life has always been - I'm not quite this, nor that...

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Comments (1)

• m-d-Y H:i:s | | Maya

  Good luck! I hope that the holes you put in do the trick.

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