They all had TB and died of it.
Now, what do I sort of have in common with them?
I had TB (the non-contagious type, relax) twice--and lived to tell the tale. :) (Aren't you glad?)
The first time I was 15, a sophomore in h.s. All fall, I had been losing weight, feeling tired and had an increased cough. My PFTs were plunging, but no one could figure out why, as sputum culture after sputum culture came back negative. One of the docs at clinic told us around Thnksgiving that this was "normal CF progression."
Dr. M didn't buy that. I did, until the Sunday morning when I was in my parents' room, watching Meet the Press and getting ready for Mass when I brought up a dime-sized clot of blood into the tissue. Well that just about freaked me out. Now it wasn't like in Moulin Rouge or anything, where it was actually liquid and spotty, but it was more, um, collected. Like solid. Well I crumpled up the tissue and threw away the evidence (and didn't tell my parents until later that day, or the next, I don't remember.) . But I worried about it all day--I too had seen the movies. It didn't look happy.
Well in January Dr. M decided to run some tests, including a test that I am sure is a remnant of the Spanish Inquisition--the pH probe. Never, never, never, ever, doctors that are reading this, make your patients go through this unless it is absolutely necessary. It is the worst test on Planet Earth, and I have had a lot of tests. Well, OK, maybe MRIs are the worst tests on earth. But I digress. A pH probe, for those of you who haven't had the immense pleasure of one, involves sticking, well, a probe (which is about a thick as a pencil, maybe a bit thinner) up your nose, down your throat and into your stomach. Without any numbing agent at all. Or, that first time, any warning of what was going to happen! Let me tell you, not pleasant. And the real bonus? You have to keep it in for 24 hours--and eat normally! Heh! You can't eat normally with what feels like 8 or 10 bee stingers in your throat. So I didn't. I went home and slept it off, which was hard, because you can't even swallow without some pain. Now I have a very high pain threshold, but this just sucked. The goal of the test is to test the acidity of your stomach (Dr. M was trying to see if I had acid reflux, which can lead to lung infections.). I did manage to eat some Taco Bell (I love Taco Bell), which probably didn't help the acidity readings. :)
I was never so happy to get up at 6 a.m. in my entire life, let me tell you! The probe was pulled, and I went up to 5T to await my first brochoscopy, which, let me tell you, is my favorite test ever because you get great drugs to a) put you to sleep, or relax you (I think the goal is relaxation, but I fall asleep) and b) forget the procedure. Fentanyl and versed is the drug combo I get, anyway. And it's great. I love tests where all you have to do is be relaxed and feel your body turn to jell-o. But apparently I am known for talking a blue streak while "under the influence", so if you ever want to know my deepest, darkest secrets, ask Dr. A or Karen if you can come into a bronch with me. :) Bronchs allow docs to do a "lavage" (that is, a clean-out, like a car wash) of saline in your lungs to get better samples than from a regular culture.
The bronch took about an hour and I spent the rest of the day on 5T with my dad, waiting for the drugs to wear off so I was coherent enough to go home. After a few days, Dr.M called and said that it was non-contagious TB (or macrobacterium), which only 4% of the CF populations even gets...lucky me!).
Treating that was a fun, fun thing...more on that in the next post....
[podcast] The Truth About Teens #064
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