This post is far more medical and far less political than what I wanted to post, but today is the first day I’ve been able to not think about breathing for any appreciable stretch of time, and that’s still most of the day spent figuring out breathing-related stuff.
I had known for awhile something was screwy about the way the more asthma-clueless members of the medical profession approached me when I was having a bad asthma attack. I could be sitting there and only able to fill up my lungs part of the way (and not much of the way), and they would be sitting there telling me I was fine, my lungs were clear and full, and nothing at all was the matter.
During the mess this week, one of my doctors prescribed a peak flow meter. It measures the strength of your ability to blow air, and therefore potentially various things about your airway. I got some peak-flow tracking software to go with it while I waited for my allergist and pulmonologist appointments. Might as well have some information to give them.
The way it works is there’s a certain level that’s your best possible flow, and then to measure the severity of what’s happening to you, things are divided into zones, usually a mild zone of 80-100%, moderate 50-80%, and severe 0-50%. The little booklet I was given on the topic, had said to make your baseline your “personal best” (when you had no symptoms the highest reading you could possibly get), and have that be 100%. And then it gave some average norms and such based on age, height, and physical sex.
You’re supposed to base it on when you’re symptom-free, but I wasn’t symptom-free, so I was trying to use the norm charts. The norm for my age, height, and physical sex listed in the chart would be somewhere around 465, which would mean that mild would be 372-465, moderate would be 232-372, and severe would be 0-232. I noted this and started using the peak flow meter.
Disturbingly, I found that even when I was having what I would consider moderate to severe asthma symptoms — as in sometimes emergency-room-grade problems, times when it took all the physical effort I had to keep my chest going up and down more than barely, and so forth — I was getting readings between 250 and 450, as in mild to moderate problems. And occasional readings that were too high for any of the female scores and I was starting to chalk them up to error. I started thinking all kinds of weird things, like what if this device is useless, what if it’s meaningless, does this mean this isn’t really asthma if my peak flow is so good even when I feel so awful, so then what the hell is it, maybe I really am doing okay, maybe I ought to run around a lot and forget all this crap about being short of breath, and so on and so on and so forth.
Eventually I started actually inputting all this crap into the tracking software, and was disturbed to find that I was in the green (mild) zone practically all the time even when I could barely cross the room without getting winded. I felt like crap marking off things like moderate or severe breathing problems next to an entry for something that according to the chart I had on hand was mild to moderate.
And then I got permission to change the dosage of the Prednisone I was being prescribed, so there’d be less of it but spread out more over the day. (I’d thought this necessary from near the beginning after seeing how short-acting it was, but nobody else had, and everyone else except those who actually spent time with me were saying that what was happening wasn’t severe enough to warrant that, and I’m not the expert here, supposedly.)
Anyway, as things started to actually kick in more and more, I started getting some very interesting readings.
600. 650. 700. 710. 770.
Suddenly the things on the charts started falling into the appropriate zones (green, yellow, and red, for mild, moderate, and severe) really fast. Suddenly 450 was 58% (yellow) instead of 96% (quite green), and 250, which had been right before an emergency room trip, was 32% (red, downright scary). Suddenly I started understanding what the people around me had been saying all this time about how horrible my breathing sounded, and how much I needed to get assistance. Suddenly I understood why I still felt fairly crappy at 600 and was still mildly wheezing at 710, and double-checked and triple-checked and was not doing anything to obstruct the peak flow meter’s proper working conditions when I hit 770.
All the charts I have looked up stop below 770, and the height they stop at tends to be the norm for a 6 foot 8 inch healthy young man. My “personal best” might even be above 770, although I was feeling incredibly clear (and the breath was the easiest I’d been taking in weeks) when I scored 770. This means that if I am breathing close to the norm for a 5 foot 2 inch 26-year-old woman (which, if you’re wondering, is exactly what I am), there’s already something going well into the “this isn’t a good thing going on here” zone.
Death from asthma isn’t necessarily about how much air you’re getting during an attack, at least not initially. It can happen because your lungs are working very hard, and tire out. Mine were starting to do that kind of thing. A lot. It was taking a lot of effort, even when they were capable of filling more than they were filling, to get them to fill to the capacity they had at any given moment. The default was to breathe incredibly shallowly unless working at it consciously, which I sometimes had to do to the point where I couldn’t think or type. The amount of work this takes is proportional to the way your own lungs normally work, not what the norm is. Yes, my airway might right now (as the Prednisone is wearing off) be more capable of spewing air out rapidly than most healthy people’s my age, but I’m already into the realm of having to think about breathing more than I should, and that’s where some of the danger is here. Breathing isn’t supposed to depend on conscious effort, no matter how much air you’re sucking in and blowing out — or how quickly — when you do it.
The good part about all this is I’m also starting to be able to document things. Like my flow dropping by 100 L/min just because I went downstairs in the elevator to briefly take my dog outside for five minutes with my face covered pretty well against the cold, and the fact that even minimal exercise is doing this to me at the moment, even before I feel it in my lungs. And like the fact that when it feels to me like something pretty serious is going on — especially with my generally poor body awareness — something serious is going on. And that my mother’s comments that I’m the sort of person she could have made training videos off of, and that if I say something’s wrong, something’s always wrong, are not just maternal pride of some sort. All the numbers at this point correspond roughly to my gut, and some of them are more sensitive than my gut (which is useful).
And hopefully I’ll have that documentation around whenever I see the new specialists. I apologize for a really long post that’s more medical than political, but after seeing numerous doctors who didn’t know these things, and who told me the opposite of a lot of these things, and who insisted they knew better than I did what was going on in my body, I’d like people to know that these things are actually real and that assumptions based on some kind of statistical norm can be really, really, really dangerous. I’m currently at what was my best a few days ago, and this still isn’t good at all. Which is kind of scary when I remember both what the worst felt like (including being unable to get to sleep because I’d stop breathing entirely whenever I stopped thinking about breathing) and what I was told about the worst (which was that, even if I was actively fighting for air and could not stop thinking about it for a second, it didn’t matter because my oxygen readings appeared normal so I was in no actual danger). People really ought to know how many doctors don’t know a thing about asthma, including where the signs are beyond wheezing or the dangers beyond oxygen-meter levels.
By the way, the cab driver who last drove me to the emergency room had a heart attack in the past and had ongoing heart problems. The doctors at that lovely hospital I went to, told him that unless he had another heart attack, they wouldn’t do anything for him (especially since he can’t afford heart medicine). He asked them “What if it’s my last heart attack?” They said, “Then you don’t have to worry about a thing.”
And on the off chance there’s any doctors reading this, a quote or paraphrase from my mother, a retired respiratory therapist (and yeah it’s medical language but you get the point): An asthma patient complaining of respiratory distress is as serious as a heart patient complaining of chest pain and should never be disregarded or taken lightly.