Just Keep Breathing

This week I would like to talk an elephant in the room that is part of my life... My breathing. 

As most of my readers know that I've been using a ventilator full time for around two years, it's taken me time to adjust and feel comfortable with how I look, sound, and feel. A few years back I started seeing a pulmonary doctor, and to be honest it was a little unnerving. I intellectually understood that my breathing would inevitably degrade as my diaphragm(the muscle that moves the lungs) continued to weaken but going through is a completely different thing. At first I was advised I to start using a Bi-Pap at night—which my brother had been doing for some time after a bout of pneumonia—I, of course was stubborn and reluctant to accept this change. I soon realized however, that better breathing and in turn better sleeping changed how I felt completely: I had less headaches, was sharper and more alert. This was very effective for quite awhile but I started to need to use it in the evening when I felt a little short of breath. Unfortunately, to do this I had to be plugged into the wall which was extremely limiting. When someone with DMD begins to need day time ventilation the "text book" course of action that doctors suggest is installing a trach and vent, which is essentially a small, surgically created hole in the neck with a tube attached. My parents—being trend setters when it comes to care—decided to go the noninvasive route and simply use a battery pack in conjunction with the device I brother and I we're already using(mind blowing I know). 

I vividly remember my first major outing in public with the Bi-Pap was my Grandfathers memorial service; I was scared to death(excuse the pun) that everyone would take one look at me and think "oh shit, we'll be going to his funeral soon". As harsh and unfounded as these fears were, I insisted on taking my ventilator off to say I few words about my grandfather. Getting over this social anxiety was a battle, I fretted over each time I saw someone I knew and pretty much refused be in any pictures. It was my brother, Andrew that helped me to to realize I am the same person that I always was. We came to the conclusion that if we could accept each other, it wasn't hard to imagine that others could as well. 

A few months ago, it was discovered that my brother and I's CO2 levels were on the rise and a more effective ventilator was needed. Doctors again pushed for a trach but noninvasive technology again prevailed, we researched and began using AVAPS (average volume assured pressure support). With the new devices our levels normalized and we have remained stable since. Lately, I feel pretty damn good health-wise and confident about I look. These solutions will not work forever, that is understood but as they "Que Sera, Sera"—whatever will be, will be.

To all my readers I say:

Adapt, Adjust and Just Keep Breathing... for every breath truly is precious.