Well, the past couple of weeks have been, um, shall we say intense? But largely in a good way, so it's hard to complain too much. I feel bad for not having kept up more diligently with the blog -- and was seriously touched beyond words by all your lovely messages of concern and love -- but I needed to take just a little time for myself, to watch this new world continue to unfold around me and to figure out, as well as any one ever can, I guess, my continued place in this amazing thing called life.
I will say that the learning curve on all of this new stuff -- on transplant and diabetes and new medications and just relearning my own body -- is steep, to put it mildly. So much of this is just plain new, and while new can be exciting and fun and wonderful, it can also be confusing and even (dare I write this?) downright hard. Is that okay to admit to you all? Does it cast me in the light of ungrateful patient or whiny survivor? Do I give myself away by acknowledging that even life with new lungs isn't always perfect?
The past couple weeks have seen some amazing changes, many of them nothing short of miraculous. My lung function shot up 10 points to about 56% FEV1, numbers I couldn't have even imagined for years pre-transplant. I got my staples removed and my scars are pretty much healed, freeing me up to move more, sleep in new positions, and just generally enjoy a whole new level of comfort. Everyday activities are no longer exhausting -- who would have thought the grocery store could be a fun place to be, honestly? I feel good, and my entire family is looking ahead to a time in the not-so-distant future when perhaps my mom can return to her home and her husband and her puppies, and I can return to an independent and, well, somewhat "normal" life. I'm off several of my meds now, and the hardcore CF routine is a thing of the seemingly distant past. And there are many moments -- more of them each day than I can count, really -- when I simply have to smile and reflect on how unbelievable this wonderful transformation is, and how blessed I am to have been chosen to receive this gift, not to mention this amazing level of care and support from friends, family, and doctors alike. It's way more than any one person deserves, and I try hard to never lose sight of that simple but overwhelming fact.
And yet, for all the beauty of this time, it has also been a period of extreme adjustment. My egotistical side has long prided itself on taking things -- particularly medical things -- in stride and without too much drama (although I should probably admit here that this wasn't always the case -- my teenage years were definitely marked by a certain melodramatic flair when it came to all things CF). Partially collapsed lungs, constant infections, weird port drama, hospitalizations, surgeries, struggles to gain weight, antibiotic reactions, hearing loss -- I've been there, done that, survived, and maybe even been able to laugh about it all along the way. Because after all, no one knows slightly morbid, comedy-of-errors style humor better than the professional patient, right?
So why, I wonder, is the sudden combo of a few (okay, fine, a LOT of) new pills, some extra medical appointments, a few new IVs, and (most recently) an increased load of steroids to deal with some minor acute rejection throwing me for such a loop? Is it the combination of being somehow both healthier and more fragile than I was during my hardcore CF life? Is it the shift in identity that seems to come with the move from CF patient to transplant patient? The sudden realization that I'm not at all sure what to expect from this "new" body that is both wholly myself and utterly foreign all at the same time? The always somewhat jarring change from one medical team to another, no matter how competent and lovely that new group of dedicated professionals might be? The frustration of being unable to jump headfirst back into the "healthy" life I so long imagined would magically reappear with a 6-hour surgery followed by a short and uneventful recovery period? Or maybe just the realization that things are unalterably different now, for better or for worse (or, more honestly, for better AND for worse) -- for the rest of my life. Which is, as I mentioned before, both wonderful and, quite frankly, scary as all get out.
So maybe I am a little more whiny than usual these days. Maybe I haven't been on the top of my game in terms of taking everything in stride and cutting both myself and others slack where it needs to be cut. I think in all honesty I'm trying to be something amazing, somehow trying to prove to myself and to everyone else that I was worth this miracle and that I can handle everything like some kind of smiling transplant poster child, and the truth is that I'm really not succeeding in much besides maybe driving myself even crazier than normal. So, okay, I've still got a little learning left to do. Guess I haven't reached the top of that curve yet, and to be honest I probably never will.
But the fact of the matter is I am making progress. I am, for all my flaws and my frustrations and the fact that I'm fairly certain some of the people in my life would tell you that I've lost my mind, actually doing something right. And sure, I may not be winning any awards for transplant superstar at this moment, but I guess that's not really the point anyway. Because my illness has never been the defining aspect of my life, and I'm not going to let it become so now -- hard as it is to remember sometimes.
So here's to the changes, the good and the bad, and here's to emotions from happy to sad. It's real and it's lovely, and just like the song: it is all well and good and, of course, life goes on.
- 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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