I still remember when I came out of my tracheostomy surgery, my neurologist was standing at the foot of my bed looking down at me with disapproving eyes. The good doctor was against the trach from the start saying that my quality of life would plummet.
At the time, I was doing as much as 18 hours of chest percussion, cough assist, and suction to get rid of secretions in my chest. You see, I have bad allergies accompanied by a nasty post-nasal drip – the mucus would drip down my throat and end up in my lungs. This troublesome process of removing the secretions was extremely exhausting. It’s no fun when you constantly deal with the sensation of drowning. This was not the way I wanted to live. So, I pondered the question: how is getting trached going to deteriorate my quality of life further?
Yeah, I was terrified of the surgery. On top of this, my lungs didn’t function at all (I had been fully vented for the previous six months).
The surgery gave me instant relief – the new hole in my throat allowed my caregivers to bypass the mouth and go straight into my lungs; it now took seconds to clear secretions.
Getting trached was the best decision I have ever made; my quality of life improved drastically and I’ve never slept better.
If my life with ALS is better being trached then why was my neurologist against it? Furthermore, I’ve heard that mine isn’t an isolated experience as far as receiving misinformed advice from neurologists is concerned (i.e. “you’ll be attached to a machine for the rest of your life”, or “it will only add, at best, a couple of years to your life”). Which begs the question: should they be giving advice about the tracheostomy and ventilation techniques to their ALS patients in the first place? Now, taking into account the obvious fact that their specialty lies within the physiological realm of the brain and not the pulmonary system, the answer is an emphatic Hell no! You wouldn’t go to a McDonald’s for an oil change, would you? It’s the same premise here.
I have the utmost respect for you and I know that one day you will find a cure for this disease. But, until then, when your ALS patient inquires about artificial ventilation possibilities, instead of passing on your opinions beyond the scope of your expertise, please refer them to professionals who specialize in the pulmonary system such as a pulmonologist, an ENT doctor, or a respiratory therapist.
And for the ALS patient, if you are interested in getting trached and ventilation, I implore you to get advice from these afore mentioned professionals who specialize in the pulmonary field or ask one of us who actually lives with a trach and is ventilated before making a final decision.
For more on this topic, check out the PowerPoint presentation on my “Videos” page.
Copyright © 2016 Kipling A. Jackson