Lessons From my Epic Battle with Pneumonia

I’m usually a healthy quadriplegic. The kind that never gets sick, never has skin issues, never needs to see a doctor (except for the occasional UTI). I was the “untouchable quad” for 17 years, and I loved every second of it. Well, that all changed January 31st, 2010, when I got Pneumonia (the bacterial kind). It came on the tail end of a cold virus I‘d been battling, and nestled itself in the upper quadrant of my right lung. I was in the hospital for 12 days and almost died. Almost.

Quick action, IV antibiotics, and some crazy coughing techniques are what saved my skinny ass. I’m blessed and so happy to be back home in my once-confining condo. (it’s funny how being in the hospital makes you appreciate things in a new light). And the thing about being sick is that you learn a thing or two (or three). There are lessons abound whenever you experience illness. And since Pneumonia is the #1 cause of death of people with quadriplegia, I feel compelled to share.

Here’s how you can go from “sorta sick” to almost-dead before you know it, and warning signs for you quads out there who like me, are scared to death of the big baddie that is Pneumonia.

Lesson #1 – Watch for purple lips: When my PCA came to get me up when I first got sick and saw me in all my purple lips and purple scalp glory (classic signs of oxygen deprivation), we knew something wasn’t right. At the time, we didn’t know it was oxygen deprivation, but we did know that whatever was happening, it was pretty serious. On top of that, I was experiencing a huge uncomfortableness in my chest and couldn’t get enough air no matter how hard I breathed. These, my friends, are classic signs of Pneumonia.

Lesson #2 – Get to the ER, and fast: If you have a SCI and think you have Pneumonia, you need to go to the hospital in order to beat it. There’s simply no way around it. IV antibiotics are almost always required, and if you need an IV, you have to be hospitalized. So be prepared for a hospital stay (hopefully it won’t be as long as mine).

Upon arriving to the ER, they took my oxygen levels (which were at 80. They should be 90 or higher) and an X-Ray of my chest, which revealed Pneumonia in the upper-right lung. The ER doc said if I had waited another day to come in, the Pneumonia would’ve dropped into my lower lungs and I would’ve likely died. So – no waiting. Get your butt to the hospital as fast as possible if you think you have Pneumonia.

Lesson #3 – Coughing is paramount over everything else: When you get Pneumonia, be prepared to forgo sleep in way of coughing, which you’ll be doing more of than you’ve ever done before in your life. You simply must get that fluid and gunk out of your lungs if you want to beat it (which feels like liquid glue. Not easy to cough up). If you can’t cough on your own very well, also be prepared for multiple visits from a respiratory therapist, the person who’s job is to help you cough. Consider this person your best friend.

My respiratory therapists helped me cough in two separate manners. First, they used this chest pummeling machine that consisted of a chest strap they’d wrap around me. They’d turn on this machine and the chest strap would inflate and pummel my chest as if tiny gnomes were hitting my entire upper body with little fists. It actually works, and usually after a 10 minute session on this machine I had plenty of stuff to cough up. Secondly, they helped me quad cough, a technique in which they place their hands under my diaphragm and push upwards as I cough, helping me get a stronger cough since my chest muscles are paralyzed and I can’t get a strong cough on my own.

And I figured out how to assist myself in coughing by using my knee. I first sit up the bed, then grab my left leg and bend it up towards my chest. I’m pretty flexible so I can get my knee cap up into my chest with little effort. So at this point I cough, but on my cough I pull my knee into my chest at the same time. This technique works SURPRISINGLY well, and was the main reason I survived this whole thing.

While the pummeling machine helped, my knee technique actually got much more fluid out of my lungs. There were some nights in the hospital where I didn’t sleep at all, being that I had so much fluid coming up. And it’s hard to get better when you cough all the time and don’t sleep. My doc ended up prescribing Ambien to help me sleep near the end of my stay.

Lesson #4 – Practice breathing in your chair before you get discharged: I was discharged too early thanks to this mistake, and had to experience a scary three hours home alone of not being able to breathe before I was brought back to the hospital. Breathing in bed is a different beast when compared to breathing in your chair. I really didn’t know this until getting Pneumonia.

When I first got up in my chair after a week of being in bed, I could only get full breaths if I leaned back and found an open area in my lungs. I was too afraid to tell my docs I wasn’t ready to leave, even though in retrospect I felt very much like I was getting hurried out (another topic for another blog). Anyways, it was incredibly hard to get my lungs back to their chair-worthy health. I had to spend four more nights in the hospital with three daily visits from my respiratory therapists to finally get them back to that point (and upon going home, a week of taking it easy and 24/7 PCA care to get my endurance levels back).

Now that I’m home and things are finally back to normal, I can say without question that I feel very much like Jesus, who after three days of being in that cave, and who everyone thought was dead, came back to life. I have never been as sick before as I was with Pneumonia and now with being home, I do feel like a new person, back from the brink.

I got a second chance to continue living my life as a C5-6 quad, and I’ve never been happier about it.