I don’t know how many of you have done a Pulmonary Function Test, so here’s a quick rundown: inhale as much air as you can then exhale it into a machine as hard, fast, and long as you can. Here’s some footage of Nick Nolte passing out while doing one:
Nick has made a crucial mistake here and it’s one that I made for actual decades: force does not equal volume.
The problem with the Pulmonary Function Test is that it’s effort dependent. Whereas I can test my blood sugar with no more effort than pricking a finger or attaching a little sensor to my stomach every 10 days (shout out to the Dexcom G6–you blew a ton of my money on a Super Bowl ad and sometimes you come up with a ridiculous reading, but I’ll love you right up to the moment that they finally crack non-invasive glucose testing)–a PFT requires a lot from me: at least three of my hardest, longest breaths (repeatability matters!).
If I were an athlete, I’d say it’s the difference between a drug test and running a sprint, in that one is passive and the other can be affected by the weather, my mood, or even the time of day. But I am not an athlete, so I will not say that.
I will liken the PFT to singing, but I’ll do it later. First, a small detour through medication.
In December 2019, I started Trikafta, the latest Cystic Fibrosis drug from Vertex Pharmaceuticals. Like Orkambi and Symdeko before it, Trikafta uses a combination of drugs to help out my busted Cystic Fibrosis Transmembrane Regulator (CFTR) protein by getting it to the surface of my cells and making it function in a more normal way with it gets there. Basically, more salt and water can pass through my cells and my mucus is less sticky. It works pretty well!
It also costs roughly $300,000 a year, but for now I will simply mention its price, partially charity funded development and incredible profit margin in passing so you know how I feel about high drug prices (against!).
The phenomenal shareholder value of Trikafta does shade my view of it slightly, though I have to say I feel better than I ever have. Some of that has to do with circumstances–working at home has done wonders for my health–and Trikafta hasn’t taken any medications off the table, leaving me with a current total of 12 daily medications, give or take a nasal spray. Plus I did pretty well on Orkambi and Symdeko before moving to Trikafta, so my lung function didn’t take a huge leap on Trikafta. Not at first, anyway.
When I started Trikafta there was a month or two where I brought up stuff that felt like it’d been in my lungs for years. Neat! It’s very satisfying to cough up a crusty piece of brown gunk that’s in the shape of your bronchial tree. But for the first official clinic PFTs I did 3 months after starting Trikafta, my lung function actually dipped down a little bit. That was disappointing when I was expecting record highs. If crusty old mucus wasn’t holding me back, that meant that maybe my lungs were just beat up after so many years of abuse and this was the best they would ever be.
As it turns out, I was holding back my lung function.
PFTs measure a lot of things, but there are really only two things that I care about: FVC and FEV1. FVC is Forced Vital Capacity which is a measure of the total amount of air exhaled. FEV1 is Forced Expiratory Volume in 1 second or the amount of air you can blow out in 1 second. When asked to move as much air as I can in 1 second, what I hear is “how quickly can you give yourself a headache?” I was taking the “forced” in Forced Expiratory Volume too literally.
Pre-pandemic I made two incredible decisions though only one is really relevant here: I bought an electric drum kit in December 2019 (if you’re curious, the other decision was not taking a job in a city that got rocked by ‘rona). At the time, my drum skills were limited to some Rock Band I’d played 10 years prior, so I essentially made a $400 bet that I’d actually learn and play the drums. About 10 weeks later I was furloughed from my job for about two months. Guess who’s an adequate drummer now?
I learned that if you want to get better at something, do it every day. Even if you do it poorly at first, you’ll eventually get better through sheer repetition. Maybe not great–I also spent some time trying to learn piano and my progress there has been slow–but better.
So if I wanted to get better PFTs, I should do them everyday.
Just sitting on my ass and breathing as hard as I can isn’t the same thing as putting up big lung numbers. The process of PFTs requires a feedback loop; I need a number that I can beat myself up about. Luckily, since I’m enrolled in a continuation study for Trikafta and it wasn’t/isn’t exactly safe to go to the hospital just for fun, I got mailed a handheld spirometer that hooks up to my phone.
The research coordinator was a little nervous when I said she’d be shocked by the amount of data she got from me, but so far no one has said anything. Immediately after my morning medicines, I do a couple PFTs to see how the lungs are. For the first few weeks, the efforts weren’t great, essentially matching what I had done at the clinic. I had assured everyone for years that if they just let me practice I could put up some big numbers and it was starting to look like I was full of shit instead of air. But I eventually realized that in forcing out the air so hard that I got light headed, I was actually closing up my airways.
It wasn’t until I was listening to Amorphis’s tremendous 1999 album Tuonela that I figured out what I had to do: I had to growl.
I think Tuonela is the first album I ever owned with growls on it. It’s not really a death metal album–more of a dark progressive rock thing–making it somewhat controversial among the fanbase and somewhat ignored by the band. I celebrate the entire catalog though as Amorphis are a beast too beautiful to be contained by one genre and Tuonela is one of my favorite albums ever.
The song “Greed”–the middle in a triptych of absolute bangers–has a very long and low growl in the beginning that I’ve never been able to replicate, though I’ve tried for roughly 22 years. Possibly because I have bad technique, I noticed I move a lot of air when I do it, far more than I was moving in my PFTs. So I growled into the spirometer.
Ladies, gentlemen, and non-binary friends, we had an all time record.
It doesn’t really count if you can’t hit it more than once, so I did it every day until I could. In doing so, I modified and refined my technique. My PFTs got a little worse at first–any time I make a “breakthrough” learning anything, I tend to get a little worse at said thing before I get comfortable with the new technique–but I eventually learned to play my lungs like an accordion. It still makes a weird noise when I do the test, but now it’s less like a dinosaur roar and more like a ghost taking a dump. See for yourself!
For those that would like to play along at home, first I inflate my chest as much as possible, using my diaphragm for overflow storage. I think it might help to practice a few inhales while not inflating your rib cage, but when it’s showtime, you want air everywhere you can put it. Then I like to visualize doing a long, low growl and really focus on keeping every airway as open as possible. Then I send out as much air as I can, making sure to not do it so hard I start closing off airways (though I still don’t get it right every time). When it works, the whole house gets to hear the resonant frequency of my lungs/throat, a sort of low “ugggggghhhh” sound.
The first time I did this in an actual hospital setting–hitting the note in the rehearsal room is one thing, but it’s doesn’t mean shit if you can’t do it on the big stage–I warned the technician that I would be making a weird noise and would probably breathe out for longer than they’re used to. Thankfully, the larger apparatus of the clinic spirometer ate up most of the noise, but I think they were wildly unprepared for how long I would take. Not only did I hit a personal record, but I bested my previous FEV1 by .2L, which is kind of a lot. I had done about a 3.47L three months prior, which was a small bit away from my previous best, 3.54L which I did about two years prior to Trikafta. My new clinic record is 3.69L (nice).
I expected a parade to accompany this new record, preferable one where the ticker tape would be my old medical records that they no longer needed because I’d never have to come back. Instead I got, “we just want to make sure you’re still using your Acapella device and doing regular airway clearance”. I hate the Acapella–I’m a threshold PEP man, thank you very much–because my hot breath renders it useless, but if you say that to a medical professional they essentially view it as suicidal ideation, so I usually just say “yeah, I’ll try that out again”. Sometimes it’s just easier to tell them what they want to hear.
What they don’t want to hear is that my airway clearance regimen includes death growls and attempting to drum Judas Priest’s “Painkiller”. In their defense, there is more clinical data on the Acapella device and I don’t think any of them have heard “Painkiller”.
My lungs still aren’t perfect–my FEV1/FVC ratio is on the high end of low because I screw myself by coming in for too soft of a landing–but maybe there’s a song that can help me with that.
To be clear, I could not have gotten to this place had Trikafta not cleared out the nastier corners of my airways, making it so I could get out more growls without choking on mucus, but it alone was not enough. I also required 10-11 other medications, practice, luck (my health took a big upswing when I started working at home), money (those prescriptions aren’t free!) and Amorphis. But hey, don’t let your disabilities hold you back, right?*
*The current state of discourse on the internet makes me feel like I need to fully explain myself here and say that there are very few–if any–people who are actually attempting to be held back by their disabilities but are instead crushed by a system/society that does not give one single fuck about their situation.