I sort of laugh at myself that I am still writing stuff here which I think I'm naively thinking will help someone else. Because so much of it you will likely learn pretty fast if you are involved with the medical system for any length of time, and I wouldn't be surprised if you learn it a lot faster than I did.
But here, again, are my meager "offerings" and maybe they'll be helpful. Or maybe interesting for people who are like I used to be, unfamiliar with all things medical.
First of all, words. I have learned the usefulness of learning to speak "doctor-ese." It might take awhile, and you might feel a bit uncomfortable, but I highly recommend learning the terms you hear your doctors and nurses tossing around. I mean, as much as you possibly can.
You already know one of my favorite words, though it isn't technically a "medical" word. Still, I now ask far more often "Would it be reasonable....?" than "Would it be possible...?" And I smile almost every time I do it, but seriously. Want to amuse yourself amidst the drudgery of hospital life? Play a game. See how many times you can count a word like "reasonable" or whatever it happens to be. Makes me smile (really, in a nice way, I don't mean any harm by it.)
And a new favorite word is now "atypical." Yup. Because it really does make a difference, using this word when I discuss Joel. I was often finding myself saying "Joel's disease is weird, it reacts in weird ways." Or "I find that Joel reacts differently than you'd expect other kids too." Etc.
Then I finally wised up. Now I say something like this: "Joel's symptoms are often atypical because of his PBD." And know what? Doctors take that a lot more seriously. I mean, I can even just hear the difference myself between the sentences. I doubt very much that doctors are even aware of this, but using a word like "weird" does not garner the same respect as saying "atypical." Because atypical means something to a doctor whereas weird is just what the neighbour kid insults your child with. Ya know what I mean? So I swear I see a difference in how they react to what I'm saying depending on how I describe it.
I highly recommend you become quite conversant in medical language. Yes, doctors should speak regular English to you, nurses too. But they are used to doctor-ese. It's their native language, so it's only to be expected that they feel more comfortable with it, and pay more attention and respect to it.
I will also say that to do this effectively, you must NOT be afraid to stop them and ask em what something means. Particularly because the more you speak "doctor-ese" the more they may feel comfortable using it, which means you'll need more explanation. That's not a bad thing though. I find I somehow learn more when I ask them to define something. Makes me feel better about clarifying what they have said and asking further questions, where when I'm getting a "dumbed down" version, I tend to sit quietly and take it in.
The other thing I'd like to mention, is numbers. Yup. Now I am not naturally a numbers person. So when the doctors would come to me and say that some test was "a little high." I'd leave it at that. Accept those words, as opposed to scary and hard to remember numbers. Now, more and more, I ask for the actual numbers that go along with it. Several reasons for this.
First one goes with what I mentioned about words. If you know the numbers to pass along to the next professional, it is just better. It does give them a much better idea if you can say the actually number of the last INR, instead of saying "it was a bit above normal." And, again, you get more respect, for example, if you say "His INR is usually around 1.4, so I feel a bit concerned when you tell me it is now 1.7."
Which leads me to my next point. Numbers are important. Doctors also use them to figure out TRENDS. (Here is another useful medical term. Trending. I use it a lot now too. As in, "It seems to be his INR is trending upward.") And you'll be a better advocate if you know the actually stats. Maybe most of you are already on to that, maybe it is a no brainer, but for a words and not numbers gal like me, it was a bit of a revelation.
Here is an example: When Joel had his second last ACTH tested, the doctors came and told me that "His ACTH was slightly high, but not concerning." I let them go with that. Then I thought better of it, and asked the nurses for his exact number. Which was 30. And tells me nothing. So I then asked the nurses what the normal range was. And they looked it up and told me (because nurses don't know this stuff off-hand, either, but they'd get the info for you.) that normal was 1- 10.
Doctors obviously look at these numbers and stats differently than we do, and sure, they do know more about particular tests. However, when I'm told that my son's reading was "slightly" higher than normal, and normal is 1-10, I'm thinking he's at 12 or 14. Imagine my surprise to find out that he is actually 3 times the upper number of normal!
So I spoke to the endocrinologist. She assured me that she didn't even blink when she numbers upward of 50, and that she barely blinked at 80! She obviously knew something about the test that I didn't. Why would the normal range not be from 1-50, if FIVE times what the normal number is doesn't make you blink??? The world of doctors is a strange, strange place.
Thing is, SHE was satisfied with the numbers she got. Once I knew what they truly were, I was not. I was wondering if the numbers might be TRENDING upwards, for one thing. I was also wondering if the test were still affected by the meds they had given him, and well, to be honest, three times the "normal" might sit well with the endo, but it didn't really sit well with me. I thought that it would have at least been "reasonable" to say we should watch it, maybe retest in a couple of weeks, that sort of thing. So I asked her if it would be reasonable to retest him to make sure if everything really were ok, and to her credit, she was ok with that. It was, apparently, a "reasonable" request.
Which is how the day after Joel's low blood pressure scare, we put him on permanent cortisol replacement, as that ACTH test came back at 118, and 11 times the normal amount is definitely too high.
I still wish that right from the beginning I had paid attention to all Joel's liver tests. Then I'd know more about when his liver numbers were just fluctuating normally, or when they were TRENDING up or down over time. At that time, though, I barely knew my own name and the mere thought of all those incomprehensible number blew me away.
And the last thing I'll say, depends totally on what sort of person you are. Do you (like me) want to know absolutely everything, or would you just rather know things on a "need to know" basis. Because you might naively (as I did) think that doctors will automatically tell you if what they are testing is a fairly serious thing or not, but they won't. Trust me.
When Joel had an ultrasound this spring, to check out his abdomen, I had a vague idea it was to see how his liver was doing, but no one explained to me about varices and the seriousness of the problems in the liver if they were discovered. Not tell much later did I find out.
Also, I knew that Joel's blood was tested for ammonia from time to time, but I hadn't a clue about it. Until I looked it up on the internet and discovered that high levels of ammonia were a very serious condition that would damage the brain and was related to liver function. THAT got my attention. Some people don't want to know. But I DO. I really do.
So now I ask a lot more questions about what even something as innocent as "blood work" is. I mean, I ask em exactly what they are testing for, even when they say its a "general" work up. I want DETAILS, people!
Ok, that was a lot of detail for you, I hope you didn't fall asleep on me! If nothing else, I hope you have learned some useful words to use with your doctor: reasonable, atypical, and trending. You'd be surprised when info like this comes in handy!
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