As I'm sure many of you already know if you have watched my video, back in 2012, I suffered an acute respiratory failure. Now this doesn't mean that my lungs just gave out, it just means that I suffered a very specific – and now chronic – breathing abnormality. In my case, my respiration is so shallow because of muscle weakness and joint tightness in the chest that I must use a biPAP (like a CPAP) to assist in breathing when laying down. Doctors felt at that time that this was only the start of the future escalation of problems, being confirmed last June when I was in the hospital for a week.
During many visits with pulmonologists over the course of the last two or so years, the plot line laid out before me was that over a period of time I would become more dependent on the biPAP, even when sitting up. Switching to a ventilator, eventually to a full tracheotomy with a respirator breathing for me. I have made it VERY clear, the final step is NOT an option, I will not be attached to a machine during my last days. Until that time, the doctors and I are trying a course of different medication and device options that might help slow things down.
One of those options was to try something new called a "Trilogy", which is essentially a biPAP with the ability to control the volume of air that it will help me breath in. I thought, "hey, that's great!" Until the respiratory therapist installing the device started throwing around the term "ventilator". This threw up a red flag for me, I wasn't supposed to need the ventilator until my muscles could no longer support my breathing. Wouldn't that be the last thing I want, to get my muscles too use to the assistance too early?
You would think I wouldn't succumb to the pressure of a respiratory therapist before calling my doctor and confirming the seeming incongruence of the situation, but no, I went ahead and used the device anyway for one night. Don't be stupid like me, stick with what you're using and make sure to talk with your doctor first. My first night with this thing is definitely not doing it any favors. While it may be a cool selling point to say that the device is constantly "watching you" and adjusting its levels, it got old really quick. I couldn't tell from one moment to the next. If there was going to be enough pressure to take a good breath, or too much pressure that the air would start escaping through my tear ducts – totally serious! due to an incorrect setting, it would end up forcing me to breathe in way too often, almost as if I were hyperventilating.
After getting into my chair, and taking off the mask off my nose, it became brutally clear that this was not going to work. Trying to take a breath and have everything just going through the motions, is the scariest feeling in the world. With my BiPAP, the transition was usually fairly insignificant, but with the Trilogy it felt like I was gasping for air for a good 2 minutes and haven't felt that great sense of a deep breath all day. Speaking with the therapist this morning, the recommendation that I received was "it may take time to get used to." But that is the question, do I want to try and get used to a device that has the potential to exacerbate and further degrade the strength of my muscles. I realize that it is still supposedly just assisting me, but in their words, "it will breathe for you if you can't."
Looks like I'm going to have to try and fight to stay awake during my infusion tomorrow so I can clear things up with the pulmonologist. As for tonight, I'm going to sleep with what works.
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