Saturday, July 24, 2010

Oh-bla-di, Oh-bla-da

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.


  1. I think you are in fact a transplant poster child. Not because you have it all figured out and all is perfect in your post-transplant world, but because you honestly and humbly admit that all is not perfect. Even in sharing your frustrations your hopeful and grateful voice comes through and provides encouragement and inspiration to those of us who are at a different place in our journey.

  2. Piper,

    I don't think that taking things in stride can be the gold standard when you're going through something of such unimaginable proportions physically and emotionally. It isn't dramatic to feel scared about your new body, mourn your CF lungs or confused and uneasy about your new characterization as a transplant not just CF patient. Those emotions are raw, real and probably a whole lot more common than you even realize. To acknowledge them and feel their weight is to be fair and honest with yourself.

    Few people (in the world at large) will ever experience what you've gone through - end-stage lung disease and a double lung transplant all before 30. It is blatantly unfair and reductionistic to blame yourself for struggling with this transition. You haven't just added pills, appointments, IVs and steroids to the mix. You've witnessed the deterioration of your CF lungs, received a new pair and in the process, acquired a new chronic illness. That. is. HARD. Incomparably hard. To admit that is anything but whiny or ungrateful.

    I don't know about anyone else, but i wouldn't want my transplant poster child smiling and making the process seem easy. That would be deceptive and dishonest. I'd want my poster child to be honest, raw and have perspective as well as a healthy dose of realistic optimism... and with those as the gold standard, i think you are a pretty damn good fit.


  3. Piper, you are amazing! Having a transplant is no picnic and recovery and adjusting is no picnic either! You are doing great and deserve to have all those feelings. Our thoughts and prayers are with you. The Greenberg Family

  4. Piper, You are making an amazing journey and I really appreciate you sharing it with me. You provide some amazing insights to the physical / emotional / mental transition process that you've undergone. Thank you.

    Wow, I have to compliment Emily on her comments. Very well said and far more eloquent that I could have ever written. And I completely agree with her.

    I'm confident that you'll adapt and begin to define a "new normal"... just give it time. :) And enjoy the learning curve! There's nothing quite like having that intense drive to get your hands on every piece of information you possibly can to try to understand.

    {{{hugs}}} ~Juliet

  5. I couldn't have summed it up better myself, everything is new and yet, not, at the same time!