Sunday, July 4, 2010


So per the naming system, this blog will NOT be part of my transplant story -- at least not directly, anyway. Instead, this is just going to be about life as I'm experiencing it now, a little over 3 weeks since my surgery. It's just me, no fancy add ons.

3 weeks. 3 whole weeks, and at the same time only 3 weeks. It feels like a lifetime. It seems an eternity since that fateful dinner that ended with THE Call. Ages since they wheeled me into that OR, away from my family and on my way to new lungs. Years since I awoke to the incredible sense that it was all a very weird dream. Already these lungs felt like mine, like a natural, organic part of me, and I wasn't entirely convinced anything had changed. All of this only 3 weeks ago, on that day when I lost my lungs and, quite honestly, a part of myself. 3 weeks ago, on that day when I also gained a new life.

Maybe it seems like a lifetime ago because, in a way, it was. My life now is different than it was 3 weeks ago. My schedule is different, my meds are different, my doctor is different, and even my body is different (or changing). I went to sleep a CFer and woke up a...well, I guess a post-transplant CFer, but the CF definitely has a new meaning. I never really cough, or at least not what I would have considered coughing before all this. I have no use for many of the meds still cluttering my kitchen cupboard and fridge. I walk straight by my silent vest and oxygen machines. None of that stuff, it seems, has any relevance in my new life, expect perhaps as reminders of what was. CF artifacts, nothing more.

I have new challenges now, and plenty of them if I'm totally honest. I feel overwhelmed by all the changes, confused by the rainbow of pills in my new 4-row daily pill organizer, and somewhat dizzy from the newness of it all. I no longer wholly understand my body, and that frightens me in a way that living with CF for 28 years never really did. I am learning new words, new medications, and new ways of thinking as I try to adjust to these lungs that lived for 45 years inside another beautiful soul. I am surrounded by physical and visual reminders that I have actually done it: I have shed my CF lungs for a new skin, and that decision was permanent. I am on the other side.

I also have simple blessings in my life that I could never have imagined. My family gets to watch me heal instead of watching me grow ever worse with each passing day. I can walk downstairs to the treadmill without thinking about whether my O2 is charged up, or how I'm going to manage it if I feel a coughing fit coming on. I can start my day without 2 hours of treatments exhausting me and sapping my energy before I even get out the door. I can say to myself "this is only going to get better from here" -- and actually believe it.

I wish I could say that this has been an entirely smooth ride. I wish that I hadn't had to bump back up on my prednisone, or that I were sleeping a little bit better, or that I could casually mention that all my pain is now completely gone (it isn't). I don't know why I want so badly to be able to say all those things -- maybe because I want to sound elated and mind-numbingly grateful? -- but the truth is that recovery is hard. I have moments of intense happiness and joy, followed by random tears. And I'm trying to tell myself that this is okay, that it's fine to feel this way while my body and, to some extent, my soul is healing from this major separation from my lungs. I try hard each day to simply live, and to smile at my father's jokes, and to take joy in my puppy's antics or a good book or just a simple walk around the neighborhood. I try to push myself within reasonable limits -- walking on the treadmill and inviting people over to socialize. I try to do the quiet things I used to enjoy with my old lungs and to remember that more exciting activities are just around the corner. I try to admire my new pink fingernails and flushed cheeks. I try hard every day to simply live, and to be grateful for the sweet breath that fills my body.

But I'm just not quite all the way there yet, though I know I will be.

Last night I lay awake because of the drugs and my own mind. I lay on my bed, the music I had selected for my transplant recovery period streaming through my ipod and into myself, and I turned my head to stare out the window. What caught my eye was the same view I have stared at for nearly a full year's worth of waiting -- the same lights, same streets, same buildings. And they are all still there, right outside my window. Only now, they are waiting for me.

Peace and love, beautiful people.


  1. Recovery IS hard, but you're doing it all how you're supposed to; slowly, and taking it all in while you can. Soon you'll be feeling even better! I love my pink fingernails too!

  2. I have no clue what recovery from transplant must be like -- but I know what recovery from much less invasive surgeries are like. It all takes time. Time you finally have!!! Slow and steady to win this race!! So glad you can look out the window and smell the roses a bit.

  3. Congratulations Piper. You made it. :) I'm so happy for you. After a roller coaster year it's so wonderful to read of your success. Sending many {{{hugs}}}.

    Oh and share a few with your puppy! So, no more inhaler rocket ship stories? Surely the little guy is finding some mischief to get into! LOL. ~Juliet

  4. As usual you word almost exactly what I'm thinking. I also then feel bad that I'm not more grateful of the gift I received. I know it's mostly the meds, but the difficulty of recovery is so hard on the overall system, harder than I would have ever expected.

  5. FIGHT ON Piper. I am so happy for you!

    I had a funny thought yesterday when you were in my thoughts - I think I was in the hospital longer recoving from my appendectomy than you were in the hospital for your lung transplant! ahahahaha! You are so amazing :)

  6. OMG....I made a playlist on my ipod called "Recovery"....

    Too funny.

    Tim aka Lex