ERROR!!!!!!!!!!!!!
From the time I was a toddler to the age of about 15, my parents had to administer postural drainage on me.
What is postural drainage you might ask?
According to cff.org: “Postural Drainage and Percussion (PD & P), also known as chest physical therapy (CPT), is a way to help people with cystic fibrosis (CF) breathe with less difficulty and stay healthy. PD & P uses gravity and percussion to loosen the thick, sticky mucus in the lungs so it can be removed by coughing. Unclogging the airways is key to keeping lungs healthy.”
My parents would cup their hands and hit my back, sides and front to loosen the mucus from my lungs. Not a very fun or exciting activity for both parties involved.
When I was about 15 years old, I was introduced to the Hill-Rom vest, a vest that I would wear that provided the same therapy as the cupping and patting my parents had to administer. M
For the longest time, I did not think I’d be able to leave for college, get married or do anything on my own because of the necessity to do postural drainage therapy with my parents daily. With the problems of seeking independence gone, a new problem developed: the need for electricity.
My vest depended on electricity and I in turn depended on my vest to loosen the mucus from my lungs so I could cough it out. My worst nightmare is the power going out and not being able to do my meds. A few years ago I got the ultimate birthday present, a generator! Yes, I wanted one and it kicks ass. Now power outages are not an issue but there is still one other. Machine errors!
A few weeks ago I was traveling to visit family and when I went to turn on my vest to start my treatment and, I see it — the one word that scares the crap out of me: ERROR! The machine isn’t working! Everything hits me then. Crap, it’s Saturday. Nothing is open. It’s not like I can shoot by Walgreens and ask for another vest machine. I’m out of town and don’t have my portable vest with me. I thought about taking it in case but it’s tough enough carrying as much equipment as I do.
The only thing worse than forgetting to bring your meds when traveling with cystic fibrosis is when your medical device malfunctions. There are still options. My wife learned postural drainage from my mom but I really prefer the vest because I’ve been using it for so long.
I called the vest company, but it was closed. How is there not an emergency line? Vest companies really should have an emergency number to call when this happens. It also would be nice if they could create a vest that just won’t malfunction during trips and/or on weekends…
I messaged friends with CF who gave decent advice except one guy who thought it was funny to tell me to pray. Fortunately, after many attempts, my wife switched it to a different outlet and we eventually got it to work. I messaged back the guy who told me to pray and said “It worked. Thank you so much. Great advice!” Did I tell you sarcasm runs in my family?
I treated that machine as a house of cards for the rest of the trip. “Don’t touch the plug. Don’t touch the machine. Let me carry it everywhere as we travel.” Fortunately, my dad was able and willing to send me a portable vest as a backup through FedEx.
These moments are frustrating and at times even scary.
I decided I needed to have a backup plan for future malfunctions. For driving trips, I will now take a backup vest. For trips that require an airplane, I will make sure to check the hours of use on my vest. My latest one had been around two years of therapies, using it at least twice a day. It was bound to fail soon.
The important thing is that I survived and was about to swap out vests as soon as I returned home so I’m prepared for my next trip.
So thank you, Benjamin Franklin, for your wonderful discovery of electricity!
Live your dreams and love your life.
Andy