"How is it that even though I have been prepared everyday, I am not prepared ?" --Suzanne Massie, Journey
That's pretty much how I felt when Dr. Patel or Dr. McCoy (I forget which, they both had the conversation with me!) talked to me about transplant being a real option -- rapidly becoming the only option. The reasoning was pretty simple: even though I functioned relatively well for someone with 30-40% lung function, I was quickly becoming prone to insipid infections that were also quite advantageous, ready to strike whenever my system was the least bit compromised. See, the thing is, we never really got rid of the nocardia after the ICU stint--it just sort of went dormant, like Kileuea in Hawaii. But at any time it could erupt again, like it had now. We knew to test for it, and we knew how to treat it, but eventually it wasn't going to work and we were going to run out of options. So instead of talking about transplant once we had reached the slow, steady descent, we had to talk about it now so that I could get worked up (which takes awhile) and listed so that when the time came we could move fast and have everything prepared.
Now I was highly, highly resistant to the idea at first, on a variety of levels. They were (in no particular order):
--Um, I'm still functioning really well. What's a transplant going to enable me to do, fly? I can do everything I want to do, when I want to do it, despite these occasional stays in the "resort." That's just part of life, right? Right.
--I don't want surgery! CF is not a high-surgery disease, and at this point, I hadn't even had sinus surgery, which a lot of CF kids get done. So I was pretty terrified of the whole idea of having my major internal organs replaced, not to mention I got totally grossed out at the mere thought of what the surgery would entail. Um, ew.
--The whole rigid drug regiment didn't really float my boat. The nice thing about CF is that you have a "regimen" but it's pretty adaptable. You have to do PT and aerosols twice (or three times) a day, but it's when you want. I could do it at midnight or 1 a.m., which I did, more often than not, after coming home from late meetings and staying after them to talk with my college buddies. The idea of "you must take these drugs at a specific time or else" didn't really jive with me.
I never said these were great reasons, but they're why I was resistant. Plus, there's the whole mental road block. No one likes to think that their options are running out and that transplant--essentially waiting for someone else to die, so you can live-- is their only option. It's really sobering. It's like step 256,096 on the CF trail, and I felt like we were way back on like step 2,540. We were supposed to have a lot more time, and options--right?? Apparently not. But no one was saying we had to do it today. Dr. M knew that it took me a long time to warm up to radical ideas, and this was pretty radical.
I was discharged after finals (of course!) and spent the Christmas break at home, gearing up for the second semester, where I would take more classes and make up the others (fortunately the only things I really had to do were the finals, since I was there for most of the semester this time). That January, I also went with College Republicans from around Ohio to CPAC (Conservative Political Action Conference) in Arlington, VA. It was an awesome time--we got to hear the Vice-President speak and I met Ann Coulter, who's sort of a conservative idol of mine (my friend Liz says I remind her of Ann, which I take as a very high compliment). It was only the second time I'd ever been in D.C., and it was a lot of fun. Richelle and I went shopping in Georgetown and I got to attend Mass at the Basilica in D.C., which was awesome (although, due to it being January and dark when Mass let out, and the Cathedral's Metro stop being in a sort of shady area, I convinced Branden --a die-hard Methodist-- to go with me and make sure I didn't get mugged).
Traveling with CF stuff could be a pain, but the biggest problem was, believe it or not, the pills. I have a really, really sensitive stomach, and I can only take pills with certain things. I cannot take them with regular water. So I had to make sure I had flavored water, or soda, or whatever with me all the time. I also had to make sure I had enough pills in case we got stranded, it being winter in D.C. (and we took a charter bus in). The machine I could deal with; i had a portable aerosol machine, and most of my roommates didn't ask questions when I hooked it. The problem there was keeping the DNAse (an inhaled drug that 'cut up' the extra DNA in the mucus so that it was thinner and easier to clear) refrigerated. Hotel ice buckets only did so much. So I never knew if it was "good" or not...but oh well. I took it anyway. You just tried to do the best you could when you traveled...
I finished my junior year without much more drama, turned 21 with a par-tay at my house, and prepared for my senior year, which was going to be nuts because I would have to take 18 credits (full load) each semester to graduate on time. But I was so gung-ho on it, it didn't really phase me.
REACTION: HBO’s The Young Pope
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