Military hospitals handled most of my cystic fibrosis (CF) care. Many members of the military worship pain (“Get some! Rub some dirt in it, hooah!”), and assume you do, too. CFers inevitably encounter intense pain throughout the treatment of their disease.
That’s a formula for: CF treatment in a military hospital is brutal.
Case in point: When I couldn’t pee after a stomach procedure in my teenage years, doctors assumed my bladder was in shock, so they ordered a catheter. Nah, not an IV catheter, like a catheter up the, uh, the weewee. I begged to get anesthetics for it. You haven’t seen a man weak until you’ve seen him moan for mercy upon his thingamabob. Summarized response: No sedatives or pain relievers needed! Hooah!
Two nurses in camouflage uniform pinned me down while a third threaded the thingy up my thingy. They were having trouble getting it up there. I could feel my face turning purple. I didn’t know what to do except hold my breath. I wasn’t handling it well at all. I even squeaked like a tortured mouse.
Nurse to my right: “Just curse, man! Cursing helps the pain!”
Me, gasping: “I c-can’t, my mom is outside in the h-h-hall.” Then a bolt of pain and a shriek: “FUUUUDGGGE MONKIESSSSSS!”
I’m not the cursing type.
Anyway, turned out I wasn’t peeing because a nurse accidentally set my saline drip on too low of a rate. My bladder wasn’t shocked, I was just dehydrated. They took the catheter out pretty quickly once I whined enough.
Freshly de-catheterized, I realized I was fine with dying young-ish from CF because I never want to be old enough to be dependent on a catheter. It was also the moment I realized I wasn’t nearly as prepared for hurt as I should have been despite pain being as much a part of my life as breathing.
If I had every needle that ever violated my body, I’d have enough pointy metal to make my own Iron Throne. During my end-stage disease, the general body pain was so deep, I could feel it radiating in my bones — all my bones. I hurt so badly that it felt like I was cracking my rib cage with each cough-kaboom.
Then I really did have my rib cage (the sternum, more precisely) clocked in half during my lung transplant surgery. My chest was sliced open, I had my lungs ripped from my chest, then had new ones sewn in place. What the frick, man? And I never once received any kind of training for pain management. What the frick, man?
When telling doctors about my pain, I would be asked if it was in the lungs. If so, we might do something about it. If not … well, the lungs are the priority, let’s focus on that. If I ever did get pain management, it was in the form of prescription meds. Pain medication works, but it’s not the ideal. The typical CFer is so overburdened with medications. If we can avoid adding more — especially the addictive ones — why don’t we strive for that? Why don’t we have pain management specialists on our CF care teams? I didn’t even know those types of specialists existed until I had my double-lung transplant. Would mental health in the CF community improve if we didn’t dread inevitable pain?
I’m doing fine now. I’ve learned to control pain and accept it as it comes. I mostly use (self-taught) mindfulness. But I only recently obtained that degree of pain management. I’m 24. Many CFers are in agony from infanthood. How can we look at children, know they’re going to suffer, and do nothing to prepare them?
P.S. John Hopkins University is doing a survey about pain management in CF. Click here to fill it out.
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