THIS IS MY STORY . . .

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Sep 24, 2013

2 1/2 weeks ago, I went through my first sleep study and had a follow-up appt. scheduled on October 2nd to discuss the results.  But this past Friday, I got a phone call from the sleep clinic—they told me that Dr. H wanted me to come in sooner to discuss the results..!  And of course, I thought, “Oh no, bad news??”  I didn’t know what to expect!  I guess you could say I was a little anxious, and I analyzed and re-analyzed everything, imagining all the worst-case scenarios that can happen with sleep. 😉

Today was the appointment.  I asked Dr. H if he has good news or bad news, and he said he has “gray news.”  Lol!

Incredibly sweet and kind, my sleep dr. spent over an hour with me, going over the sleep study results and all of his recommendations.  He has an awesome bedside manner!

So here’s what’s happening when I sleep:

  • It turns out I “wake up” and “gasp” around 12 times every.single.hour!  That’s once every 5 minutes…!  That’s probably very amusing to watch. 😉  These frequent sleep interruptions cause my heart rate to shoot up to over 107 bpm (normal rate during sleep is under 50 bpm).  Then my body/legs jerk, and I get “aroused” from sleep.  This cycle happens over and over every hour..
  • I have sleep-disordered breathing, and my Respiratory Disturbances Index is 12.2 (normal is less than 5).
  • He diagnosed me with hypersomnia (Excessive Daytime Sleepiness) and an “unspecified sleep apnea.”  It’s unspecified because my whole medical history is challenging/confusing, and I’m not the typical sleep apnea patient (i.e., I don’t really fall under Obstructive Sleep Apnea, Central Apnea, or Mixed).

So Dr. H wants me to do a 3-month trial of CPAP, but he suggested I wait until after we get more results/answers on what’s going on neurologically since CPAP can cause central apnea.  That wouldn’t be good!

This is a big week!  Hopefully tomorrow my geneticist will fill me in on the mitochondrial exome sequencing results!  I’m nervous about what the sequencing may or may not have found..  I really wanted to hear from her today (since the results were just posted earlier today), but Ohio is 3 hours ahead.  So I just have to wait!  But that’s a tough thing to do.. 😉  No matter how many times I have to wait for results, it NEVER gets easier!!

    Post written byKerissa

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