The dangers of assuming things about norms. (Sorry, another asthma post.)

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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.

peak flow chart

Oh.

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.

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

17 responses »

  1. Ah, peak flow meters.

    I should be a 6’8″ male 3 yrs younger than me too. Except I don’t have asthma. I have singer’s lungs. And piss-poor aerobic capacity (explain that one to a doctor. Or don’t. It isn’t worth the effort).

    Here’s hoping data collection beats some sense into them.

  2. The thing that every medical professional should be aware of is if something is significantly impacting upon a person, to the extent that they are unable to do the things they normally do, or are experiencing significant pain or discomfort then it should be counted as in need of urgent attention. Every body is different, every body experiences things in different ways. To say that one person’s level of pain or discomfort is only mild, when that person is impacted greatly by it is highly erroneous.
    Conversely, medical professionals should be aware that just because a person doesn’t articulate how they are feeling, does not mean they aren’t in discomfort or pain. From a personal viewpoint I find inititating talking very difficult. It’s not down to reserve or anxiety, there are plenty of times in which I’ve felt quite at ease but am unable to get the words out of my mind and into the open. I can initiate some of the time and once I get going I can be very talkative. But I find starting things off or being able to get the words out very hard a lot of the time. And this increases when I am under pressure or stressed, to the extent that even if someone says to me “are you ok?” they will get a “fine” because I know if I say “no” they will then ask why and I won’t be able to get the words out. In those circumstances just the one word becomes a struggle and more is an impossibility. I know that with myself I could write down what was bothering me, but a lot of people wouldn’t understand why a woman who is capable of talking, is not capable of talking part of the time.

  3. I have a similar problem when it comes to fevers. My normal body temperature is 98.2 degrees fahrenheit, as opposed to the expected average of 98.6. This means that a temperature of 98.8 is actually more than half a degree of fever, not a two-tenths-of-a-degree minor fluctuation of body temperature, and 99.1 is nearly a full degree of fever. It also means that a temperature of 98 degrees even is likely to be either a very minor problem, or nothing to be concerned about at all. And yet, despite widespread knowledge by the medical profession that 98.6 is really the average temperature for a healthy adult, not the normal temperature (everyone has there own individual norm, which will probably be close to 98.6), I have an almost impossible time getting many medical professional to believe me on this. This leads to poorer diagnoses, and could be dangerous if I ever developed a severe illness involving fever.

    So it’s important to make sure that doctors know and understand that the numbers to measure an average person’s reaction are of limited usefulness, and the dread listening to what the patient says needs to be done.

  4. bullet you just made me understand something about my husband and we had a small talk about it and we agreed maybe he could tell me ‘i have a problem but i will tell you more later.’

  5. PS: again, Amanda, glad to hear how much use the data collecting stuff is. it’s nice when technologies do what they are supposed to. (would be great if people did, too, though.)

  6. Peak flow meters are also expensive, especially the ones adapted for children’s usage – more ‘out of pocket’ expenses.
    Glad the charting is giving you some good data from which to make a plan.
    best wishes

  7. I’ve also got a peak flow way above that which I ‘should’ have. Is this a gender thing? Since this is now three of us who have innappropriatly high readings – perhaps this is one of the things that takes male readings as the norm and then bungs in some bloody stupid assumptions for female readings.

    I also recall being told by a nurse that I couldn’t possibly have asthma, since I wheezed when I breathed in rather than when I breathed out.

  8. I have two young children that are having some pretty bad asthma problems, and one that’s having mild problems recently,too. I try to avoid the predinisone if at all possible, so I’ve been spending a good part of my day sitting with them giving them their breathing treatments. they always have flare ups at this time of year,though I’m not sure why. I think it has something to do with the allergens in the air. The peak flow meter is very useful in collecting data, but like you, I’ve noticed that my daughter’s readings don’t match up to what the little booklet says she should be for her age. There are times that she says she’s having problems when the meter says she isn’t. From what I’ve been told the meter is supposed to show a lower reading, BEFORE you start having the physical symptoms, so that you can get a handle on it ahead of time. It also helps that their pediatrician has asthma herself, so she has firsthand experience with the symptoms, and medications that are best.
    Anyway, sorry to ramble on. Hope you get to feeling better.

  9. Men supposodly have stronger lungs than women. Perhaps that’s the largest misconception, or perhaps the “average” is miscalculated, or balanced by a previously unmentioned proportion of “weak-lunged” persons.

  10. An asthmatic doctor sounds really good.

    I’m not sure whether I’m unusual or not — I have had fairly extensive singing and wind-instrument experience, and I’m told that makes a big difference.

  11. Just a minor question to “j’s” claim that “despite widespread knowledge by the medical profession that 98.6 is really the average temperature for a healthy adult, not the normal temperature (everyone has there own individual norm, which will probably be close to 98.6), I have an almost impossible time getting many medical professional to believe me on this.” Now, I’m not calling BS on you, but what state/country do you live in? I’m surprised when even a layperson doesn’t know that the average normal temp. for a healthy adult falls between 98.2-98.6, let alone someone who is a “medical professional.” I know many doctors aren’t perfect, but I have trouble believing that this is any sort of a typical failing…unless you live in Alabama, in which case, I retract my statement in it’s entirety.

  12. Good to know you are breathing a bit better now. And with regard to the clueless-doctor issue: I am consistently amazed at the degree to which assumptions (and stereotypes) are invoked at a higher informational priority than the actual data sitting right in front of someone.

  13. I’ve encountered people (myself included) that have the so-called lungs of a man, that don’t have that type of experience. So, I think it may be an overall oxygen consumption/capacity thing, which can come with singing or wind-instrument experience, among other things, making the phenomenon of “man lungs” more common than presumed.

  14. My normal temperature is 97.7 and they always see it as normal. Of course, if I came in with a temperature of 98.6 they’d probably still see it as normal, but that’s rarely been a problem.

  15. I’m from Oregon, but part of the problem is that I rarely have the kind of medical problems that go all the way to the doctor. As a kid, I got sent to the school nurse a lot, and I spent a lot of time in the Peace Corps, where there was a nurse we were supposed to call for advice every time we were sick. I don’t think I’ve ever gone to the doctor with a fever. I’d usually deal with a nurse (or someone described as a nurse), who wouldn’t ask me anything about my normal temperature, but tell me that such-and-such temperature was a minor/nonexistent fever, and I should take an asprin and go back to whatever I’d been doing.

    So possibly doctors do know that, and probably most RNs, but I spent a good chunk of my childhood learning that feeling like I had a fever and running a high temperature for me didn’t count for anything, and I’ve never had a medical professional take any interest in my normal temperature (even if I go out of my way to inform them),

  16. I have the same problem with correlating my peak flow readings with how I actually feel

    Sometimes , I’ll be so short of breath that I can barely walk around the house, and my peak flow will read 500 when it feels like it should be 200! ( my baseline is 600).

    Turns out that peak flow meters only measure flow rates from the the larger airways. If you have significant small airway damage or remodeling , as is common in severe asthmatics, your peak flow readings will never truly reflect the degree of obstruction. The concept of green, yellow and red-zones goes right out the window.
    You have to recalibrate, so rather than 300 being my red-zone , in actually, 550 is my yellow zone and 400 is my red zone!
    A big difference in the way ER docs are going to determine how sick you are.

  17. I am terrified of all of this, I dont know whether or not to believe my peak flow anymore. I am new to ALL of this asthma BS and I cant stand it any more! I am terrified of dieing. I never freaking feel like I can breath WELL. Yes I am surviving doc, but I feel like shit. I dont even know what to do anymore, this stuff scares me to the point of panic ATTACKS, and then I cant tell if its a panic or asthma attack. I check my peak flow to see if its in my head or real, but now I dont know if I should believe it or what…If ANYONE has ANY advice feel free to email me…Davidsonfairen@yahoo.com. Thanks!

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