Thursday, November 19, 2015

The "Hopefully Soon To Be Rested" Tube Fed Wife

I just have a short update for the blog today! I saw my Sleep Specialist today and he had some interesting revelations for me. What I interpreted from the Sleep Study results as an overall data sum of the entire night was actually an average data sums per hour of the study. Meaning when I expressed in my last post that I awake due to Sleep Apnea 24 times a night, I actually wake 24 times an hour! Whoa! 

Sleep Apnea is a disorder where you stop breathing due to a collapsed airway while initiating, or maintaining sleep for any amount of time. This often send an alarm to the brain to awake, even if you don't remember waking. It highly disrupts your sleeping patterns and causes extreme restlessness. Essentially, I wake up about every 3 minutes resulting in less than 10% of the night in an actually REM sleep. REM sleep is the cycle that causes the complete paralysis of muscles, the suppression of brain impulses, and vivid dreams. This is the phase of sleep that results in a rested feeling if properly attained each night. You can see how this could cause some major issues; sleep is an essential part of the bodies healing, and emotional coping process which I cannot seem to successfully participate in due to this disorder. My Sleep Doc has decided to fit me for a CPAP (Continuous Positive Airway Pressure) device that will constantly initiate air pressure through my nose and mouth to keep my airway open. We will trial this machine for 30 days and record the data to see if I need to alter the air pressure being received, or if I need to move to a BIPAP with would initiate inhalation and exhalation. 

Next week is round two of Cytoxan... The day before Thanksgiving actually! Even though I cannot eat I do still truly enjoy the holidays, even if they are centered around food. I just really like hanging with family and friends! It's okay though, this treatment is so important and I can always celebrate the Holidays another day. The week after that I will be back to the constant appointment grind! lol Finally seeing my Autonomic Specialists about my recent POTS diagnosis the first week of December! Wow, December so soon! Funny side note, turns out I was wearing a mask the wrong week after chemo. I thought I was most susceptible to germs the week of chemo, turns out its the week after! Oops... I think I'll just wear my cool new VogMask the first two weeks after treatment!

Happy almost Thanksgiving! Eat some Pumpkin Pie for me! ;)


  1. Thank you for taking the time to publish this information very useful! I've been looking for books of this nature for a way too long. I'm just glad that I found yours. Looking forward for your next post. Thanks :)

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  2. Chanel I am curious... the NIH study recommended *oral* Cytoxan therapy. Did your UCLA specialist discuss that option with you?

    1. Hello, and thank you for your question! My provider prefers the IV route as there are less GI side effects, and I am heavily effected by my Scleroderma in the digestive tract.