Life on a ventilator may be a requirement but it isn’t and hasn’t been an enjoyable process. Well, except for the breathing part. That’s what the ventilator does. It breathes for me because ALS has taken away most of my ability to breathe on my own.
How so? And what about the air dying? More on the latter in a moment.
Most people with ALS will die of respiratory distress and most of those people die of pneumonia. Certain nerves deteriorate and die and the brain cannot get proper signals to the muscles so they stop working. Muscles. Not the brain.
In most cases of ALS the breathing muscles are the last to go. In my case, they are the first to go (except for a few postural muscles in the back). When the diaphragm weakens and does not work sufficiently to make breathing normal, other muscles can be called upon to help; abdominal muscles and accessory breathing muscles (in the chest).
Unfortunately, those muscles are not like the diaphragm and are voluntary. For the most part I have to think for those muscles to work. Stop thinking about breathing and breathing stops.
That’s where the ventilator comes it.
Think of it as a sewing machine sized device which pulls in air (in some cases, oxygen) from the room, filters it here and there, and then shoves it out a tube into a mask that is clamped to my face. When the ventilator is running I can breathe and not have to think about it.
What if the ventilator stops working?
One day it stopped working. I woke up to go to the bathroom and set the ventilator on a standby setting. Instead of the familiar beep sound to let me know all was OK, the ventilator went into an alert mode with loud, continuous beeps, and flashing red lights.
I restarted the ventilator a few times but each restart gave me the same result. Loud beeps and flashing red lights. Tiny print on the screen said something about a malfunction and a need for immediate service.
No ventilator, no air. Or, at least, no air that is easy to breathe.
Fortunately, ventilators are really computers and while something definitely went wrong, a short while later it was working normally, I could breathe, and the warning signs had ended. Later the same day we swapped out the wonky ventilator for one that worked normally.
There are two events in my life in which the air will die. One is when the ventilator quits working. The second is when even the ventilator cannot keep me breathing.