A semi-condensed synopsis of my lungs
I recently wrote an email to someone summarizing my whole experience (re: my lungs), which I’ve been meaning to do for a while. Here it is.
• Early November: I got some sort of [rather minimal] cold, which took me a while to recover from, as has always been the case for me (as a little kid, I used to pretty much never go to preschool: when other kids got sick for two days I’d be out for a week). Except when I got better from the cold itself, I continued coughing and wheezing.
• December: Everything just kept getting worse. I couldn’t breathe without being involuntarily forced into a forced expratory maneuver, which I’d taught myself to do (it involves compressing and squeezing all the air out of your lungs so as to wring out mucus blocking anything. When I first did if for her, my pulmonologist said that she’d never seen someone do it like that without being taught, and even then that it was super impressive)
• January: I finally saw a pulmonologist, who soon diagnosed me with protracted bacterial bronchitis. I began a course of cefdinir (I think), as studies had shown that and one other antibiotic to be effective against the majority of cases of PBB.
• February: The cefdinir had greatly improved me, but I slipped back when the three-week course ended, so…
• March: …on the 6th, I had my first brochoscopy. (sidenote: I had the worst anesthesiologist ever. She kept swearing in front of us, and then she left the IV needle thingy on my bed (thankfully my mom caught it, so I didn’t get hurt). When they put in the IV - not even any medicine - I fainted and kicked off my shoes. It was really, really unpleasant. I have an irrational fear of blood etc, so that was actually the third time I’ve fainted) It found 500,000 colonies/mL of haemophilus influenzae in my right lower lobe (and hundreds of thousands in my left; I just don’t remember quite how many), plus a few thousand colonies/mL of three other kinds of bacteria. It turns out that the other of the two CBB-treating antibiotics - augmentin, aka amoxicillin/clavulanic acid - actually treats the H. influenzae. Hence, I began a course of that. It again helped me, even more this time, but I slipped back once again (though I was still better than before).
• April: I don’t remember the exact date, but sometime around then the fungal culture came back from the bronchoscopy (it takes a few weeks, whereas the bacterial culture takes only days). Instead of the expected negative, it tested positive for aspergillus. I started seeing an infectious-disease doctor, too, and after some debate, I began a medicine called voriconazole.
• May: I stayed on the voriconazole for five weeks (near the very minimum course) but didn’t experience any impriovement. In addition, I got super sunburnt (which doesn’t really ever happen to me) and began experiencing skin breakdown (taking off a band-aid ripped my skin) and discoloration (my arms got all spotty). It also suppressed my appetite, or so my mom’s told me. Apparently voriconazole is a really intense medicine. Eventually I stopped taking it when I started developing hepatitis and had no positive effects. The aspergillus was, in essence, a red herring.
• June: I had my second bronchoscopy on June 6, which was incidentially the last day of school (I’d already finished my finals, having moved conflicting ones). It found a variety of other bacteria, which at this point I’ve lost track of. Somewhere in here I did a course of bactrum. Eventually…
• July: …it got to the point where we’d tried pretty much everything. After a particularily bad day running (throughout this whole thing I kept on doing Nordic skiing and track), we were given two options: another steroid burst of prednisone, or going into the hospital for IV antibiotics. We ended up doing the latter, so I went into the hospital out of nowhere. I actually didn’t know that I’d be going in until the mid-morning, and we came directly from a bookstore. I left with a PICC line, through which I’d take meropenem (also used to treat anthrax!) every eight hours for the next five weeks.
• August: We started going into the Mayo Clinic, and after some consultation visits, I had my third bronchoscopy done, plus an endoscopy at the same time (I might be micro-aspirating in my sleep and contaminating my lungs in addition to all this). They also placed an impedance probe (a wire that went down my esophagus and came out of my nose), which stayed in for the next 24 hours. That was definetly one of the most miserable experiences of my entire life… they’d said that it would be quite unintrusive, but every time I tried to swallow or move in a certain way, some internal muscle involuntarily contracted, and it felt like it bluntly poked me deep inside the back of my throat. A few weeks later, I got my PICC line out. In total, we did 121 antibiotic doses at home.
I think that that kind of concludes the story so far! I’ve excluded the not-so-notable doctor visits and other miscellaneous things, but I think I remembered the major points.