Sunday, December 12, 2010

A Prayer in Celebration of Time

And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
--T.S. Eliot (The Love Song of J. Alfred. Prufrock)

Time is kind of a funny thing, when you think about it.

5 months and 29 days ago I couldn't breathe. I could barely put one foot in front of the other without feeling as though the world was falling out from under me. I woke at night coughing, gasping -- startled out of slumber from dreams where I was drowning in a swirling ocean and unable to break the surface. I preferred to sleep on my couch over my bed, not so much because of physical comfort (there was, in my mind, no such thing as real physical comfort anyway), but because somehow I had the sense that in the living room it would be harder for me to slip away entirely. Proximity to people -- to anyone, really -- became my lifeline. Literally.

5 months and 29 days ago, by the way, my dog preferred to sleep elsewhere as well, mostly with my mom. My continuous coughing and weird gasping left him visibly uncomfortable, and his puppy brain compelled him to offer me gifts of his favorite squeaky toys or bones and then retreat, if possible.

5 months and 29 days ago, throwing up was an almost daily occurrence -- not that it ever got any less disgusting, mind you -- and eating was a serious chore on par with other nearly insurmountable tasks, such as climbing a short flight of stairs or walking to the end of the block.

But 6 months ago today, all of that changed.

Today marked exactly 6 months from the day I was wheeled into surgery around 1 in the morning with mucus-filled CF lungs and wheeled out about 5 hours later with wonderful, brand new (to me, at least), healthy lungs. It is 6 months to the day from the moment I awoke in the Cardio-Thoracic ICU, unable to speak because of a ventilator tube and unable to think straight because of a ridiculous amount of drugs, but desperate to communicate about everything from my thoughts regarding visiting hours to my desire to know my O2 saturation and heartrate. 6 months since I sat in my bed taking stock of each individual digit (my memory is of slowly moving one finger, then thinking to myself "okay, that's alive" and moving on to the next small appendage, which is somewhat of a testimony to one's emotional state right after such a major, life-transforming surgery). And it's been 6 months, to the day, since my support team near and far read this untitled post by my beautiful sister, and left the comments that would make me laugh, smile, and use 10 minutes worth of strength and concentration to try and formulate some form of reply to in the days to come.

It was 6 months ago that nearly a year of waiting on the transplant list and 28 1/2 years of treatments, airway clearance, and lung infections were brought to an end. (Well, that's almost true -- I remain susceptible to lung infections, though the scale is different, and I was sent home from the hospital on airway clearance, nebu lizers, and IVs. I have since dropped the airway clearance entirely, and hope the other two will follow suit in due time.) I have spent 6 months learning the names, dosages, timing, and side effects of my new rainbow regimen of anti-rejection, anti-infective, and other drugs. 6 months since my medical vocabularly expanded to include things like CMV-mismatch and bronchiolitis obliterans syndrome (BOS). And it's been 6 months since I began the lifelong learning process of how to deal with life when the lungs that keep you breathing are no longer the lungs that were made for your body.

How weird to think about on an intellectual level.
How crazy to even imagine.
How beautiful to experience.

And now, 6 months from that day, that hour, that instant when the whole world turned upside down and inside out and backward: I. Feel. Amazing.

  • I have walked miles along the beautiful streets of Manhattan.
  • I have visited friends and spent nights unencumbered by treatments or O2 concentrators.
  • I have celebrated 29 incredible years on this Earth.
  • I have purchased a new apartment and had dreams about a new life and all that comes with it.
  • I have attended my sister's fashion show.
  • I have had people tell me to slow down while walking because they can't keep up.
  • I have annoyed my dog by refusing to stop our walks when he wants to linger.
  • I have lifted my glass in toast to my godmother on her 60th birthday.
  • I have laughed and not coughed . . . honestly.
  • I have been blessed with a community of CF/transplant friends who share my doctors and with whom I can speak openly about any issues that arise.
  • I have chased and played fetch with my puppy, who is no longer afraid of my breathing
  • I have, and will continue to, give thanks for every moment -- even the not-so-wonderful ones.
I have also visited my doctor more times than I can count, had well over 10 bronchoscopies, been treated twice for mild rejection (once with oral steroids, once with IVs), endured several rounds of IV antibiotics, cultured a couple of new bugs along with some of the old critters, watched friends suffer from chronic rejection, given myself shots for blood clots and low WBC counts, received weekly blood draws to test the drug levels in my system, and suffered shakiness, migraines, high heartrate, insomnia, changes in my appearance, and nausea -- to name just a couple of the many, many side effects. None of which change the fact that, for really the first time in my entire life, I can take a deep breath and actually feel it reach down into my lungs.

I haven't made much of a to-do about this half-year anniversary, to be honest. I'm not sure if many of my friends or even my family members realize that today marked 6 months on this unbelievable roller coaster ride. And that's fine with me, because as far as I'm concerned I don't need to be anything except Piper in their eyes. I don't need to be someone 6 months out of a miracle when I could instead be someone 29 years into being a friend, a daughter, a sister, a lover, a cousin, a coworker, and, quite frankly, a force to be reckoned with (for better or for worse). And honestly I feel that perhaps the greatest gift that my beloved Donor Bob gave me with these lungs was the freedom to move through existence not just as a patient 29 years into CF or 6 months into transplant, but as a woman with part of her life behind her -- and a whole lot of living yet to come.

So thanks, Bob, for the breathing and the beauty. For the miracles and the mistakes. For the smiles and the sighs. For everything that you've helped make possible in these last 6 amazing, indescribable months. And for all the wonder we have yet to experience together. Because, God willing, there will be plenty of time.

For everything.



  1. Hi Piper,
    This is a beautiful post, as usual! I'm so happy for you!
    Jen Fierro

  2. Dear Piper,
    I am the mother of a 20 (soon to be 21) year old CFer who has spent most of the past two years, and all of the past three months in the hospital. In October, we were told that she would not survive this hospitalization...that she would most likely not come home again. She was furious at her doctor for saying such a thing and furious at me for believing it. And she did go home after 9 weeks, only to return after a week. I sit here and watch her sleep after a horrendously painful three days (surgery to get a J-G tube, a G-tube and and appendostomy tube to irrigate her colon) and for the first time in quite some time, after reading your "Celebration", I have hope again that she too, will someday be celebrating a post transplant anniversary.

    Thank you for that gift.
    Angie Connley
    Mother of Adrianne Orel

  3. I am finishing up my transplant evaluation tomorrow. Sometimes it seems so unreal, that all of this is happening to my body, because it is all happening so fast. It is hard to believe that one day, I too, will have new lungs and a new chance. You inspire me.

  4. Amazing post Piper! As usual you inspire hope and optimism in me. I am so happy for you! I can't wait till I can celebrate being half a year out of transplant. Honestly, I am soo happy that you are doing so well. :)


  5. Oh Piper...I just want to give you a big hug.
    Love you!

  6. Piper, you have such a gift for sharing, for writing and being as genuine as anyone can be. Thanks for sharing ALL of it. You are an inspiration to all cf moms as you always fight the cf so well.

  7. Well Congrats even if you don't want it. I knew your anniversary had to be coming up since I just had mine. Your post was great, and I raise a glass (it's sleepy time tea) to many many more. For what its worth I still have never met you and your one of my favorite people. Denise and I have to come to see you!

  8. Piper,
    I happened upon your blogs via Allison's FB..she's my cousin. You are a wonderful writer and I really enjoyed reading this last post. For all of us non-CFers, it puts alot of things in perspective. Health, GOOD health, is truly the best gift. Happy Holidays to you! Cheers-
    Jen Witcher, SLC

  9. Ha! My favorite poem...TS Eliot. Thanks for the post.