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5:46pm September 8, 2013

➸ Urocyon's Jaunts: Owwwwwwww

clatterbane:

thekal:

youneedacat:

clatterbane:

youneedacat:

youneedacat:

So basically.

I’m trying to do a bit more.

Now that I’m on Mestinon and have increased muscle stamina. Which means I’m no longer collapsing in a liquid heap on the floor after doing such extraordinary activities as moving around my house too much.

But I’ve had this…

Yep I bet most of those things are factors. I actually have visibly reduced range of motion in my neck on one side now, but it’s still way more than most people would have in similar situations.

And it turns out the lung capacity thing runs in the family. My brother’s highest peak flow is over 900. Mine is 770. 400 for most people my age is good, for me it’s a crisis, but people don’t get it.

My brother thanked me for writing about it though. Because it really helped him when he ran into trouble with doctors over the same issue. He wouldn’t have even known about it if I hadn’t said something.

Yeah, the lung capacity (rather predictably) goes along with the big rib cages in my family. Plenty of room for lungs in there. 

In the crap asthma treatment files, I have only had them measure my peak flow rate once that I remember, actually the last time I had to go in with a bad exascerbation from a cold. (My O2 saturation was low enough that they wouldn’t let me leave the office and drive home until I got a nebulizer treatment that time—and I didn’t even feel that bad compared to how passing-out sick I’ve gotten with it before.) And I was too sick and panic-attacky to pay attention to the numbers. But, I have been told that I have about twice the expected lung capacity. Good if you want to take up long-distance running or not get so much altitude sickness, not so good if you want them to take your breathing problems seriously. :/

Yeah and what scares me is apparently when they take a pulmonary function test, they compare it to national norms or something rather than to what you personally should be like. So what if your lungs naturally come out ahead of national norms? It would take them much longer to figure out when something is wrong.

I have limited knowledge of pulmonary function tests from volunteering with a clinical research study, and I believe they do indeed use reference values from a national norm. I guess this is pretty common; most blood tests I’ve taken for things like abnormal blood glucose, electrolyte levels, liver function, hormone levels and so on, use reference values also. I don’t know that there’s a way of medically determining “what you personally should be like” in terms of lung capacity and so on besides a)  other apparent respiratory symptoms like effortful breathing, low oxygen b) a comparison to the person’s previous pulmonary function tests. There are several possible confounding factors, like the person’s height has to be accurately measured for the correct  PFT reference values to be chosen, and ultimately I think it’s just one of those cases where a single test can’t cover all cases, unfortunately.

This makes sense in a research context. However, it is a really good idea to figure out “normal” baseline levels for each patient in a clinical treatment setting. (And hopefully put anything that significantly varies from the population-wide norm prominently visible in the records.) It seems to be very, very spottily done, though.

Liver panels are actually an excellent example that I have personal experience with. Most of my family has elevated bilirubin levels, and a “funny” enzyme balance compared to the reference values. The high bilirubin is a good bit of the reason we are so prone to gallstones, since specks of bilirubin in the gallbladder will get encased in cholesterol like a pearl and form stones. It also strongly protects against cardiovascular disease, and all of this variation strongly affects how we handle medications. It is also totally benign, unless we’re given medications our livers do not handle as well.

This is apparently one bit of ethnic/racial variation. The more clueful medical professionals I saw back home, where this is not an uncommon pattern at all, just look at the liver panels and say “You’re Indian, aren’t you?” and proceed reasonably from there. The less clueful are liable to decide that you must be alcoholic (my mom kept getting that, obviously no racism involved…), you might have hepatitis, etc. We also regularly get jaundiced when we’re sick, because high baseline bilirubin. There was more going on there, but my mom actually got quarantined for two weeks one time under the assumption that maybe she had hepatitis. I’ve repeatedly had them insist on drawing more blood and repeating the tests three or four times, hoping it would come out more national-normal. Nope. And that’s before trying to convince some of them that, indeed, a whole laundry list of drugs are liable to do very bad things. (Before we even get to other variation there). My mom also ended up in the hospital a couple of times, with medications severely screwing with her liver. I have avoided the worst of it so far, partly because she learned a lot of things the hard way. :(

That’s just some possible results of assuming that everyone’s body comes within spitting distance of the reference values, in clinical practice. The better doctors I have seen have not done this so much, because it can be very dangerous. (Like with the pulmonary function, yeah. :( )

And with peak flow, it’s explicitly supposed to be dealt with in term of percentage of your best ever, not in terms of a national norm. But the more clueless of ER professionals won’t believe it even if you take in a signed note from your pulmonologist. Some of them will even scream at you for being there.

Pulse ox also isn’t the best measure. I mean if it’s low then it’s definitely low. But if the reading is high it still may be low, and something other than oxygen is getting measured as if it was oxygen.

Regarding being screamed at. I once had this horrible ER doctor… I had a lung infection that eventually led to the partial collapse of one lung. But this doctor didn’t want me there to begin with, and was certain that if he treated me for a nonexistent asthma exacerbation and I didn’t get better then it was my own fault.

So he started screaming at me that 430 was an excellent peak flow, yanked the pulse ox cord out of the machine so forcefully I’m supposed he didn’t damage it (because I was still showing low oxygen levels he wanted to ignore) and told me to quit lying about how it felt like there was a cat sitting on my chest because albuterol would’ve cured it and I must just be manipulating him.

I asked for a second opinion and was told that any other doctor there was working under him so he would just order them to decide I was okay. He is probably partially responsible for my bronchiectasis. And of course I came back soon after, feeling even worse, and it was “oh sorry we missed that infection, and part of your lung is collapsed, and now you’re doing to need to spend months on prednisone, but we can’t do anything about that doctor…”

I went to the ER more times during that infection than I normally ever do, and I learned a lot about how different shifts have entirely different cultures.