Wednesday, July 28, 2010

Just. Wow.

Alright, my lovely breathheads, let's see how well you've been paying attention thus far.

Life After Lung Transplant Is:

(a) Crazy
(b) Hard
(c) Immeasurably Beautiful
(d) All of the Above

Too easy? I don't think it's any secret that the answer is (d) -- life is every bit as amazing, difficult, wonderful, and, well, lifelike as it ever was. And it probably won't come as a surprise to any of my fellow CFers out there (or anyone who has ever dealt with anything real, to be honest, and who hasn't?) that sometimes having all these emotions at once can make everything seem a little . . . intense. Add to that intensity a series of independently incredible events, and it's a recipe for a couple of mind-blowing days.

Yesterday I got word that my beautiful CF friend Cystic Gal (a well-known and beloved member of the transplant/CF community) got her call. I was in the hospital for transplant clinic when the text came through to my phone, and it was definitely a "wow" kind of moment. Wow because I love this woman and want nothing more than for her to be the healthy, vibrant, beautiful soul she's meant to be. Wow because this was the first time that one of my friends has received THE call and I've been here as a post-transplant CFer -- with some understanding of what they're about to go through assuming they get beyond the dry-run stage (and, believe me, I have plenty of empathy for those who don't!). And finally wow, just wow, because transplant is always such an amazing gift of love, faith, and life on the part of the donor family, the recipient, the support team, the surgeons and the doctors, and just everyone involved. So yeah, um, wow.

And when I went to bed last night to the news that it was a "go" and knew that everyone's favorite CG would soon be breathing with beautiful new lungs, well, that was pretty cool too. She's awake now and -- I'm told -- off the vent and breathing with her lovely new lungs. Continued love and light to this remarkable young woman with a full life ahead of her.

So there was that, and it was beautiful. And so today I decided to celebrate with a bike ride with my mother along the Hudson, which was fun but the seaway was a little crowded. And that led to us packing it up after a fairly short loop and taking the pup out for a walk instead, which in turn meant that we just had to walk by some of the fun stores in our little neighborhood.

I won't go into too much detail about what happened next, out of respect for the other individuals involved and their privacy. Suffice it to say that we learned about another young woman with CF, awaiting transplant, who earned her wings way too soon this past week and is now breathing easy. Some of the similarities in our stories -- right down to the "damp run" experience -- were pretty uncanny. More than that, though, was the simple wonder of that sudden moment. Knowing how precious and fragile life can be. Remembering how many people never get second chances, no matter how deserving they are. Seeing that this woman was clearly so loved. And, of course, understanding once again how disgusting this disease is -- and how badly we need a cure. For all the beautiful souls out there.

Um, yeah, did I mention that life with new lungs can be a little intense?

Anyway, in honor of CFers everywhere with perfect new lungs or with perfect wings, and for everyone in between, I offer you the most intense self-portrait I can think of: my scars. (Note: I say "scars" because I have two of them, but only one is actually pictured here. They are relatively small (about 3 1/2-4 inches each), don't go across my sternum, and honestly are hard to capture in a full shoot across the chest, so I can't really show them both at once. In case you wondered, this is my right scar.) These are mine, but they're not much different from anyone else's -- whether physical or emotional -- who has lived with this disease.

And they are beautiful.


  1. Isn't it all so beautiful? Your scar looks great. I am really hoping to meet up with CG within the next month. I am sure we will be bumping in to each other in clinic. I hope things continue to get better for you. Lots of Love!

  2. What an amazing journey! Very cool to see what the lung transplant scar looks like. Love reading your blog Piper.

  3. Such a beautiful post.

    What happened at the store, your picture, you LIVING and BREATING. It's just fantastic.

    So happy for you Piper, you just amaze me so much and are a big inspiration to me.

    Love love love <3

  4. The Goo Goo Dolls have a song with the lyrics "Scars are souvenirs you never lose." I have always felt this was so true. We all have our own scars to remind us of hard times and to be thankful for the opportunities the future holds. Stay strong.


  5. Beautiful - the stories, the writing, and the intimate sharing of your scars. Wow.

  6. Wow, how did they get new lungs through such a tiny incision? That's incredible. Thanks for sharing your journey.

  7. Its wonderful to hear & read you are doing so well. (friend of your Mom & Dad)

  8. oh my goodness Piper, thank you so much for this post and for being such a wonderful role model. I am certainly still on the Rocky Road part of right-after-transplant, with all the complications, but now I can clearly see the other side of the hill. And I love my new lungs, although we are just getting to know each other. Sometimes they make me breathe deep and I didn't even know I needed to (big gasp in--hmm? mysterious!).

    thank you thank you thank you