Tuesday, January 21, 2014

On Waiting

Well hello again, beautiful people.

So as most of you probably know by now, I received a very special gift this Christmas -- December 25, 2013 -- in the form of sparkling new lungs from my newest partner in crime, Donor Nick. And despite my declaration at age 11 that I would never ever love a Christmas gift as much as I loved my new pink Huffy bicycle, I'm pretty sure this one takes the cake for the best.Christmas.present.EVER. To be honest all I really remember is the vague sound of the telephone ringing, the bumps in the early morning darkness as my boyfriend sprang up to get it, the thumbs up he gave me from the bedroom doorway, and then an overwhelming sense of peace that this was it, this was right, this was going to happen. True to his saintly name, my newest donor had arrived just in the "nick" of time.

He arrived in the nick of time because I was dying, literally. I had been placed on bipap for high CO2 and plummeting O2 saturations, but even that was barely working anymore, and I knew the next step was a ventilator. I was struggling just to keep my head above water in rehab, much less gain any real ground toward my strength or weight goals pre-tx, and my family had taken to staying up in shifts throughout the night to watch me breathe -- a brutal exercise in unconditional, heartbreaking love that I think any CF or lung disease family can relate to on some level or another. I knew deep down that there wasn't much time left, and they knew with me, and yet we all still hoped, wished, and prayed for a miracle.

And then it happened.

We had been teasing and joking about new lungs for Christmas for a couple of weeks -- who wouldn't have? It was the perfect image -- Santa packing a living, breathing set into his bag and stuffing them down the hospital's chimney on that not-so-white Carolina Christmas morning. And yet the reality is that it wasn't a jolly fat man from the North Pole who saved my life that day. It was a beautiful stranger and his amazing family who suffered the ultimate tragedy of losing a loved one and a family member on that holiest of holidays, on the day of birth and celebration, and who chose to turn around and change that grief into hope, into love, into a gift from one human to another that is beyond all measure -- the Gift of Life. It is to them, not to some dude in a red suit, that I will always be thankful. It is to the miracle of organ donation, that brings life from death and rebirth out of worry and tears and so much hardship, that I will forever owe my life. And I promise to use this gift as it was offered: in faith, in compassion for others, and most of all in love. I promise to celebrate the life inside of me every single day.

Which, so far, means a whole lot of hospital celebrations. I'm coming up on week 4 in here, which is not exactly rare for retransplants as they are "messier" jobs than the first. That seems to be the case with me as the only thing keeping me here is a single chest tube which 1) refuses to stop draining fluid, and 2) is now also necessary to drain some small air leaks that have caused what is known as "subcutaneous air pockets" underneath my skin and primarily in my face. Yes, it makes me look funny (think "Fat Albert" on steroids), but at least the chest tube seems o be doing its job in bringing it down.

So now, ironically, I wait. I received my gift, and I'm happy to say that everything went wonderfully during the surgery (though they had to cut poor Donor Bob -- gone but never forgotten -- out of my chest piece by piece given the sorry state of my lungs this time around). Donor Nick looks great and my first bronchi came back completely clear of infection and rejection, indicating that he is happy and healthy in his new home. For all of that I am grateful. For the tubes and suction and the solutions to the "bumps in the road" both big and small, I am grateful (if sometimes a little impatient). And for the chance to experience all of this -- for the moments, for the lifetime, for the breath -- I am forever indebted and forever grateful beyond measure.

And that, beautiful people, is worth the wait.


  1. Oh Piper, what a journey you've had!

    I just want you to know what a blessing you and Bob and you and Nick are to this community. Thank God that you have survived and endured to share these lessons with us!! We pray daily that your road from here forward will be an easy one but we delight in the fact that you seem to come through even the trickiest of challenges with a smile on your beautiful face. Good luck with all there is to come!

    Blessings and Prayers,
    Claire and the Reese Family

  2. Dearest Piper, Your words are so eloquent and touching, that I tear up when I read them. Your courage is contagious, and know that prayers continue your way, and that they include the family, Donor Bob, and Donor Nick and their families. XO, Your Godmother

  3. I don't say much, but I follow and laugh and cry with you always. You have shaped the way I parent my own kiddo with CF in ways I can never begin to thank you for. Thank you for letting me, and all of us, in on this journey. Love and healing and years of deep breathing, <3

  4. I read this....my special cousin Jan passed away waiting for lungs.........she suffered from the dreadful disease CF. So very happy to hear that you received lungs, and would encourage everyone to be a donor.....take a deep breath for my cousin Jan who cannot. Bless you dearly and praying for a wonderful life for you! God bless.

  5. Wonderful news, Piper. I'm so happy for you. I hope everything goes smoothly and that you're able to go home soon. Yippee skippy!

  6. I'm so happy for you! Hope there are many happy years with Donor Nick!
    Sarah - Lilismom

  7. Thank you so much Piper for sharing with us again. We have missed you! Hope you are feeling stronger every day. I am so excited for you, and all you have to look forward to, as well you should.

    Take care. Lizzy x