It’s that time again. Whenever I think about it my heart beat quickens and my stomach churns – I push it out of my mind and all is well … until, aargh! I remember it’s that time again.
It’s time to have my trach changed!
Around and round my thoughts, and stomach, will go until appointment day arrives and I am ushered into the, oy-vay, “procedure room.” Ha, I remember the first time Gene and I were taken to such a room. It was the initial follow-up visit after my surgery and the nurse had asked us to wait a minute while she checked on the availability of a procedure room. Uh, wait a minute. Did I hear her correctly? I looked at Gene and mouthed “procedure room?”
At that point a cold flush started to creep up from the tips of my toes, pausing long enough to stir up a bit of nausea as it passed through my stomach, before continuing it’s northern trek to my face … and, I’m almost positive, if I wasn’t sitting down I would have seen feathers sprouting because I was morphing into one great big C-H-I-C-K-E-N! Think foghorn leghorn.
It was during that visit I learned trachs are changed out on a regular basis – something like every 2-3 months (and later, reading the pamphlet that came with the disposable trach that I take for the change, it says they should be changed, gulp, every month). What?!! How in the world did I miss such a vital piece of information? Why didn’t the plethora of info I had been given or googled make it clear that these babies are not permanent? What is involved in changing out the trach? And, most important of all, does it hurt?!
While sweating over that last question, panic started kicking in to where I wanted to find the nearest exit. However, before I could make a get-away, my doctor came into the room. Dr. Osetinsky is the ENT (Ear, Nose, Throat) surgeon who did my tracheotomy and now my trach changes. He is known by his patients as Dr. O. I guess that is self explanatory, however, I also think it has become a sort of affectionate moniker connoting the warmth others feel for him.
I’ve had many trach changes since that day. I still get stressed when my appointment nears, however, I no longer turn into foghorn leghorn. Dr. O has been such a help in easing my stress/fears – his intuitive, calm, patient demeanor coupled with a warm, caring interest has engendered my confidence in his skill as a doctor and a genuine respect for him.
I am often asked what is involved in having my trach changed? That is usually followed with a few secondary questions such as: How is it done? Is there any anesthesia used? If not, do I feel it? Does it hurt?
It was Gene who had the idea of making a video of one of my trach changes. At the time I was gearing up for my first trach change all I found were sketches, tutorials, and descriptions of the tracheostomy – I wish I could have seen what it looked like. So, after getting Dr. O’s okay we got a video of the procedure and that is what I have posted today.
It is only 1 minute 37 seconds long and will, hopefully, show just how doable it is for anyone facing it or that has a family member or friend living with a tracheostomy. Uh, this is where I would normally say “enjoy” … I guess since you’re not the one having the trach yank… er, uh, I mean changed … oh, come now, you know I can never resist teasing … okay, I will stop the nonsense and let you see what it’s like to have a trach changed.
I thought I would close this post with a few stats on the prevalence of LTMV (Long Term Mechanical Ventilation) use by pALS (people with ALS), however, I found myself getting so angry when reading the various [so-called] expert opinions recorded in the data collected by narrow-minded (that is my expert opinion) researchers. Instead, I will just share the bottom line:
Only 5% with ALS are choosing to be trached and use mechanical ventilation – that boggles my mind. I know there are mitigating circumstances and it is a decision that needs to be carefully and honestly discussed with family. I hope sharing this little facet of living with a trach helps show it is manageable and doable – hey, if this big chicken can do it, anybody can.
music used in video: Brave by Josh Groban