It started when I was 15, my very first ventilator, a BiPAP. I only had to use it when I slept. It was a big machine that came with a long tube and an uncomfortable mask that sat over your nose and wrapped around your head.
I hated it. I felt like I didn’t even need it but my sleep study thought otherwise. It wasn’t until sleepovers at my friend’s house that I began to realize I actually did need it. Years passed, I got older and ended up having to depend on a vent 24/7. I went from using a BiPAP just to sleep, to using it all day. It’s literally my lifeline.
And guess what is the leading cause of death in Pompe disease patients? That’s right, respiratory failure. Knowing that, and needing a ventilator to breathe, I have to consider my breathing machine in every activity I engage in, from morning routines to traveling.
Ventilators have been around for some time and they have been updated over the years. However, I don’t believe they have been adequately updated to benefit those who need to use them 24/7. And for the newest and best ventilation with the most effective technology, insurance will not pay for it.
Imagine depending on something to keep you alive and you can’t afford the best version of it. Of course, it’s no secret that we need health insurance to cover medical equipment, but the best of the best medical equipment isn’t even presented to many patients. And when we learn of better options we can’t afford, who do we call? How can we say this is a great medical device but it’s just not great enough for me?
Almost sounds ungrateful, doesn’t it? While precise data on how many people require 24-hour ventilation is not fully known, according to the journal Respiratory Care but there’s little doubt the number is significant and growing.
More from Keyana Sullivan: Doctor, Please Don’t Google My Rare Disease in Front of Me
Ventilators are one of the most important patient devices in the medical world. It’s not just important to those with Pompe disease, it’s important to so many people with disabilities and or serious medical conditions. It’s our lifeline.
There should be a deeper understanding among physicians or others in the medical field. I can’t tell you how many times professionals have questioned working with me because I use a breathing machine. How a dentist would be unwilling to work on my teeth because I’m on a breathing machine and would actually be bold enough to make up a poor excuse to refer me to another dentist that I’ve already been to and who sent me to them.
And let’s not forget transportation. No driver wants the responsibility of someone who is breathing on a machine, just in case something goes wrong. Kinda sad, isn’t it? It’s even sadder when we’re forced to stop using these machines that we’ve been on for years for a different machine because a company is no longer making that ventilator.
And, yes, upgrades and new technology are impressive, but not when the new ventilator is a complication to you personally. We need a better understanding that trachea, BiPAPS, and CPAPS, are very different ventilators, and not everyone needs them to sleep. And not everyone is using oxygen.
I’m hoping that in my time we can have a high-tech ventilator with the look and the capability to meet specific needs. Something that has a long battery life, that’s even tubeless with a small machine you can carry in a bag.
That may sound impossible, but at one point so did bionic body parts and pacemakers, and other devices that actually work in our bodies. Let us be able to travel without worrying about the battery life or whether we have enough room to carry all the supplies that come along with the machine.
And maybe someday we won’t be judged by the way we look with the devices that keep us alive.