From his first washing-machine-sized vent to his current ‘toy’ model, writer Mike Murphy has borne witness to the evolution of a lifesaving technology
For some reason, June 27 keeps popping up in my family’s history. June 27, 1889, was my grandfather’s birthday. It was also the date upon which he married my grandmother, 20-some years later. On a far less significant — but fun — note: It was on June 27, 1977, that my parents loaded me up in our powder blue Pinto station wagon, and took me to the movie theater to see the original “Star Wars” for the first time.
It was on June 27, 1973, however, that my life, and the lives of my family, changed forever. On this date, a little over a week after my seventh birthday, I was rushed to the hospital as spinal muscular atrophy made a final assault on my respiratory muscles, and I stopped breathing.
When I came to, after having been declared legally dead three times (or so they tell me), I discovered that I now had a tube in my neck (called a trach), that was attached to a that was breathing for me. This was the MA-1, one of the first ventilators to come on the market in the late 1960s. This gun-metal gray contraption was about the size of a washing machine, and topped by a spirometer that went up and down like an accordion. Needless to say, I was terrified, but by watching this up-and-down motion, I was reassured that I was still breathing.
So began my 40 years of experiencing the evolution of ventilator (also known as “respirator”) technology. I’m part of the first generation of people affected by spinalmuscular atrophy (SMA) to live well into adulthood, thanks in no small part to better and better vents.
It took me a month to regain enough strength to go home. When at last I did, my muscles were strong enough that I no longer needed the MA-1 and switched to the Bird Mark 7 respirator. You’ve probably seen this small, green device in movies and TV shows of that era. It was a workhorse that hardly ever broke down, which is surprising, considering the number of moving parts it contained. In fact, when the respiratory department showed us what was involved in the Bird’s cleaning and maintenance, Mom turned to me and said, “Mike, you’re never going home,” but she was just kidding … I think.
The Bird ran off an air compressor that we called George, for some reason that I can no longer remember. George was in the basement, and connected to the respirator in my bedroom through a tube that snaked through a hole that we’d drilled in the floor. I still had enough strength that I could breathe without the respirator for up to eight or nine hours at a time, so going to restaurants, stores and movies was fairly simple. Longer overnight trips were still impossible, though, because they had yet to invent a small, portable compressor.
When such a compressor came along in the mid-1980s, we were at last able to take family vacations up north to Eagle River every autumn to enjoy the explosion of color, and I started attending one or two science fiction conventions a year, affording me the rare opportunity to have contact with people who shared my interests.
Around this same time, unfortunately, I could feel my respiratory muscles growing weaker. I couldn’t be without the Bird for as long as I used to before becoming fatigued and short of breath.
Since we’d been dealing with my condition for several years with good results, we never bothered to consult with a respiratory therapist, but instead just looked through a catalog and ordered one of the only portable ventilators available at the time, the LP4. We then waited for it to arrive and hoped for the best.
The best never happened.
What can I say about this piece of junk? It was just a box festooned with lights, old-fashioned toggle switches, and needles that were installed so shabbily that they never even moved. No matter how high we increased the inspiratory volume, I was never able to get enough air. As if this wasn’t bad enough, there was something about this machine that gave me a headache and made me nauseated whenever I hooked it up.
Nevertheless, I soldiered on because ... well, what choice did I have? I reached the end of my rope during the heat wave of ’88. I was riding, hooked up to the LP4, in the back of our van, while Mom and I were on our way to visit my grandfather on the other side of town when the world started spinning and I could hear the ocean roaring inside my head. I could barely make a grunting sound to let Mom know that I was in trouble. She must’ve broken several speed records to not only turn around and drive back home, but also to carry me to my room and hook me back up to the ever-reliable Bird respirator. It was now obvious that I needed 24/7 breathing assistance, which meant I needed a new machine.
It was time to retire the Bird, George and the LP4.
Enter the LP6. (This time we consulted a respiratory therapist.) This 30-pound boat anchor was state-of-the-art at the time, but despite its bulk, I could tell from the moment I tried it that it was going to work even better than I’d hoped. It delivered the exact amount of air that I needed and — something that gave me great peace of mind — sounded an alarm whenever my airway became obstructed or when the circuit would come disconnected. It was also small enough to fit on the end of my wheelchair, so that we could resume traveling both to the north woods and to science fiction conventions with greater ease.
After a few years, we switched to the LP6 Plus and then the LP10, but aside from the operating software, they both looked and functioned exactly the same as the original unit. I continued using these ventilators with no complaints for the next 25 years. The only reason that I adopted a new model this year was because technology has continued to advance and the LP10 is now considered an antique.
Enter the next step in ventilator evolution: the Trilogy 100.
After using the LP ventilators for so long, I must admit that I approached this new, small machine with some trepidation, as its square, plastic shell looked like it was built by Fisher-Price and should’ve been called “My First Ventilator.” Once I tested it in the hospital, though, I could tell little difference between it and my other LP vents. It had been calibrated to almost exactly the same settings. The Trilogy’s biggest advantage, aside from the fact that it weighs a mere 11 pounds, is that it is controlled by touchscreen rather than knobs and dials, which can be knocked out of place easily.
With my more cumbersome machines, whenever we wanted to go somewhere, my poor Dad would have to first bring a cart in from the garage, load my bedside ventilator onto it, wheel it out to the van, and then hoist it onto the back passenger seat.
Now, all he has to do is slide the Trilogy into its carry bag, sling it over his shoulder and we’re off, reducing the time it takes to get on the road by at least half an hour. Even though we got along fine with bigger ventilators for most of my life, I sure wish that we had this current model a couple decades ago. Like some one a lot smarter than I am once said: “The future doesn’t happen fast enough.”
After experiencing changes and improvements to this technology over the last 40 years, I can’t help but wonder how it will continue to evolve as we move further into the 21st century. I have no doubt that future generations will be able to enjoy longer, healthier and more independent lives thanks to even more improvements to what I like to call “The Third Lung.”
I almost wish that I could be around long enough to see it happen, because it’s going to be an amazing ride.
Mike Murphy, 46, of Oconomowoc, Wis., is a novelist, screenwriter and frequent Quest contributor. He has spinal muscular atrophy.