One of the strangest adjustments to post-tx life so far has been the realization that I am, in some weird ways, more "fragile" than I was back when I had my nasty old CF lungs. By which I mean, of course, that I am now officially among the ranks of the seriously immuno-suppressed. In fact, due to some early bouts of mild A1 rejection (which I'm not all that concerned about right now, truth be told -- for whatever reason I seem to be able to take that particular development in stride and know that it will all eventually even out), I am actually way more immuno-suppressed than I thought I would be at this stage in the post-tx process. To put it in perspective, I was discharged at 25 mg of oral prednisone along with two other immuno-suppressant drugs. I have since been bumped back up to 1000mg (1g) of IV steroids and have upped one immuno-suppressant while switching to an entirely different (and, I'm told, slightly more effective) second drug. In other words, my immune system is (hopefully?) pretty much toast at this point. Crazy.
The ins-and-outs of basic immuno-suppression aren't actually new to me, as I'm sure is the case for many, if not most, CFers out there. I was on oral prednisone (1o mg maintenance dose, up to 60-80 mgs for bursts) for over 2 years pre-transplant, along with a few runs of high-dose IV steroids in the hospital. Which, in all honesty, isn't much of anything compared to what I'm dealing with now, but at least it gave me the sense early on that: 1) handwashing is a good thing, 2) sick people should be avoided at more or less all costs, and 3) germ-filled places like hospitals, public restroooms, and airplanes are zones of caution, to say the least. All good lessons, and frankly relatively easy guidelines to follow when you get right down to it. And I mean, who really wants to be sharing drinks and swapping spit all the time anyway? I'd really rather have my own, thanks. (No comment on the spit thing, by the way.)
Okay, so I get it. Healthy immune system = unhealthy new lungs. And because of this basic equation: sick people, bad; Purell, good. Sounds simple enough, right? I can handle that.
Only it's a little more extreme than all that makes it sound, really. With my old CF lungs I had a sense of what was a problem and what was just a run-of-the-mill annoyance. I knew when a runny nose or an increased cough was likely to turn into a full-fledged exacerbation, and I generally even knew what drugs and treatment would work best to get things back on track. I had a decent sense of the difference between a "let's stay in bed and wait this sucker out with some Gatorade" type of situation and the more extreme "holy crap I wonder how full the ER is right now?" style emergency (the latter of which thankfully didn't come up all that often).
The difference is that now I'm not sure whether I know those type of things or not. On the one hand, I seem to have (miraculously) retained some of my general anti-alarmist attitude toward minor symptoms. Contrary to what I expected, I do not freak out at the first sign of a small cough or a slightly runny nose, and I weathered a migraine the other week without calling my doctor because I was convinced that it was just that: a migraine, and not a sign of my impending doom. I told him about it the next day, of course. (Actually, I should say that I think I told him about it? Honestly, I was under sedation from a bronch at the time and for all I know I told him that my head had been attacked by little green gremlins -- although my mom insists I reported the conversation about the migraines back to her before the memory-erasing effects of the versed took hold, which is a fairly good sign. I am, however, convinced that my doctor probably thinks I'm insane due to my ridiculous tendency to stay awake and do/say strange things while on hardcore doses of sedatives. I can only hope he's not in the process of drafting some tell-all book, but then again I did go to law school.)
I'm not sure if this attitude of mine is a good thing or a bad thing, all things considered. On the one hand, I am extremely diligent about my health -- as I have been for the past couple of years. After all, there's nothing quite on par with advanced-stage CF to make you learn to listen to your body, right? I tend to feel everything, listen to the warning signals, and generally make pretty good decisions about what is and is not a big deal. I also know enough to be slightly unnerved by this new routine and all these hardcore drugs. I may not be the immuno-alarmist I thought I might become (yet?), but I am smart enough to know and admit when I'm somewhat out of my element.
On the other hand, though, I feel fine. I'm not scared of people, or parks, or restaurants (aside from the diabetes/carb paranoia, which I swear I'm working on), or even the streets of New York City. Try as I might -- and, okay, truth be told I'm not trying very hard -- I just haven't been able to convince myself that this City is a cesspool of ugly, mutant germs ready to leap out and attack my lungs/sinuses/digestive system at the first possible opportunity. True, I'm not hanging out at any daycare centers or anything, but I'm also not wearing a hazmat suit to go to the Whole Foods. I look around me (well, not literally, but you know what I mean) and I see post-transplant CFers doing all sorts of things with their immuno-compromised lungs: going to school, working, raising families, taking vacations, speaking to groups and advocating for CF/tx/patient awareness, camping and hiking, going to events with (gasp!) crowds of people. I'm not saying I'm at that point yet -- I'm still taking this one day at a time -- but the one thing that I seem to be 100% sure of even during all this madness is that I will get there. I got this transplant to enable me to live my life, after all, and I fully intend to (re-)learn how to do just that.
So okay, maybe I won't be taking up gardening or starting a new career in infectious-disease management. Maybe I do have to be a little more careful than most people when I'm out on the street or choosing what foods to eat off the restaurant menu. And maybe, just maybe, my friends might get just a little bit sick of my offering them the Purell every time we get out of a cab/enter a restaurant/touch something/open a door/re-enter the apartment. But you know what? None of those things really seem like that big a deal in the grand scheme of things and when all is said and done. And for some reason giving up compromised lungs that made every little task difficult in exchange for a compromised immune system that makes certain things slightly more complicated seems like a pretty fair trade to me. Because when it comes right down to the wire, it's the thousands of things I know that I can do now that really matter -- much more so than the few things I know I can't.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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