Sunday, July 25, 2010


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.


  1. So much of the "unknowns" that you are dealing with now is what I worry about the most for my post-tx experience. Thanks for being so honest with the whole helps people like me to get a small glimpse into what is ahead. Keep the info coming and I will keep you in my thoughts that things get a little easier for you! XoxoX ~ Jen

  2. Hi Piper,

    I had my TX about a month before you and you are speaking the Gospel of post TX life! I finally decided to go to the movies for the first time last night and I did not mind rocking the mask to do it! (I also wore it into Walmart because that place just feels germy!) My purse is full of Purell, alcohol pads, and towelettes. I know with time we can ease up a little but our life is in a delicate balance. Thank you so much for voicing how I (and many other post TXers) are feeling.

    Keep rockin'!

  3. Great capture of what I'm going through too. Do you rock a mask everywhere? I am still not sure about when and where it is needed. I mean definitely in ER or hospital. Denise wants me to wear it everywhere but I feel if I'm over three feet from people I should be fine.

  4. jim, one of my tx doctors told me that the masks are 99% about reminding yourself 1) that people around you might have germs, and 2) not to touch your face/nose/mouth. her position is that it's a physical memory aide rather than an actual protection (b/c let's be honest, those paper masks in no way block out airborne germs). so no, with that in mind i don't wear it everywhere. i wear it whenever i go into a "red" zone (anywhere i might be forced to be in close, inside contact with large groups of people -- think hospitals, theaters, etc). i don't wear it in the grocery store or those type of places where i can simply move away from people.

    i had another doctor (infectious disease) tell me that he and his colleagues never get sick in the hospital b/c they are constantly washing their hands in between patient visits. he says it's only when they go on vacation and stop washing their hands that they get in trouble, even though they are no longer constantly exposed to smallpox or TB or whatever other weird viruses you see in an NYC hospital. and no, he doesn't mask/glove/gown up to go into every patient room -- unless they're on special isolation.

    maybe i'm not cautious enough on that front, but i am smart and not at all shy about separating myself, washing my hands, not touching my face, bringing my own pens and alcohol wipes to clean things, and change clothes when i get home if i've been out mingling with large groups. i don't know -- it's such a balance. i've been largely staying inside right now b/c i've been on the IV steroids (and it is SUPER hot in NYC), but when even my overly cautious transplant team tells me that it's 99% hygiene and only about 1% about avoiding all people or wearing the mask/gloves -- well, i take them at their word.