Wednesday, June 30, 2010

Part I: The Call

Recently I received an interesting request from a reader on the blog email for me to share some of the details of my transplant story. I thought that I had been doing so all along, but turns out that this particular reader wanted to see more of a narrative from start to finish, rather than a series of updates followed by my grateful ramblings. So, because I love my readers and because I think it's an awesome exercise in general, I've decided to take this anonymous challenger to task. For the next couple days here on A Matter of Life and Breath, I will be sharing my transplant narrative as I experienced it, to the best of my recollection. Some parts will be funny, some parts may be a little scary, and all of it will be as real as I can manage. Since I know not all of you will want (or need) to hear this story, I will be labeling all posts clearly as Part I, Part II, etc. Any other updates or check-ins on my part will always come under a different heading, so that you can still follow my personal messages even if you choose not to follow my transplant story. Hopefully this system will allow me to share and satisfy the curiosity of those who want to know without overloading those who just plain don't. Believe me, I understand both perspectives.

And now, without further ado, I bring you Part I: The Call

For those of you who are diehard Breathheads, you might have noticed that I posted a rather discouraged blog right literally the day before I got my call. I had just been to my transplant clinic appointment and learned that I was in fact neck-in-neck with someone else on the list. To say that this was discouraging news -- after so many dry runs and then a month with no call at all -- would be a huge understatement. Throughout this entire process I maintained that there were lungs out there meant for me, and that they would come when God was ready for them to reach me, but at no point in my journey was this a more important notion than than it was on that Thursday afternoon. Luckily my father had flown in that night and, as my family began slowly to rally from the blow of learning that the wait might be longer than we had ever imagined, we decided the thing to do was to all sit down together in an early Father's Day celebration and, in true Beatty form, talk it all out. And so, on Friday evening, that's exactly what we did. We headed out to a fantastic NYC seafood restaurant for some good food, family, and a lot of heavy conversation.

Dinner that evening was long and emotional. I was a wreck; my mother was exhausted from her year-long role of caretaker and had made plans for a quick visit home to Denver to see her dogs, her own mother, and her friends; my sister was stressed about the travel requirements of her job and her need to be in the city when the call finally arrived; and my father had come back to the lion's den at the height of all the chaos. We were, as a group, tired and overstressed, and we fought back tears throughout the meal as we struggled to reorient ourselves and regain our sense of optimism and hope. As part of this, we treated ourselves to an amazing meal, which is how my final meal with my CF lungs came to consist of hamachi, lobster tails, and an incredible dessert -- but that's a story for another time.

As I was polishing off my final bites and my sister was downing the last of her espresso, my phone rang and flashed a "blocked" number. I glanced at it and figured it had to my amazing CF doctor (although why I thought she would be calling at 10 PM I have no idea) so I picked it up without much thought, and suddenly found myself speaking to a transplant coordinator. She told me that they had lungs, that my transplant doctor thought they were a good match for me, and that I should head over "as quickly as possible" because the lungs had been, in fact, rejected by another center. Now, I want to pause here because that last part is true: my new lungs were turned down by another center because they were CDC High Risk lungs due to an extra antibody in the lungs to Hepatitis B. There are 3 blood tests for the virus, and basically this means that while the lungs passed two of them, one of the tests came back slightly ambiguous, complicating the whole process. Columbia has been able to use this category of lungs very successfully in transplants and I had been told in advance that I should accept lungs within this particular High Risk category. In other words, I wasn't shocked or scared to learn this information. Rather, I felt prepared and informed and very ready to get my new lungs.

Or something like that, anyway. Maybe I wasn't quite as prepared as I thought I was, because as we paid the bill and then headed down to the cab to race back to the apartment, I started to cry. Not sobbing, mind you, and it didn't last long, but there were definitely tears. I cried for the donor, I cried for all my dry runs and for fear this would be another, I cried for my old lungs and certain things I would be leaving behind (like that hamachi I mentioned, for example!), and I cried because I was scared. I even cried a little because I knew I would miss my puppy for the next couple of weeks if I had to stay in the hospital. And then, once the tears were out, I began to come back down to earth and accept the possibility that here, at last, were my lungs. It was an emotional experience rivaling the family dinner I had just finished, and definitely something I had to deal with before I was ready to move forward with the transplant.

The next hour or so is a bit of a blur. We got to the hospital fairly quickly after changing into our official lung shirts and grabbing our bags. Once there, we had to wait a while in admissions to get shown to my room on the transplant ward. Vitals and admission forms were handled quickly, and then came the waiting. We were used to the process after 5 tries and settled into routine quickly. I used my iPad to check messages from friends and kept up a steady stream of text messages. We continued to wait.

And then, quite suddenly, the waiting was over. A doctor with the team raced into my room, drew a ton of blood, and then quickly went to retrieve a wheelchair to zoom me off to x-ray. After several (relatively) calm dry runs with x-rays done in my hospital room and riding on a comfy gurney steered by transport, I was a little surprised to suddenly find myself literally racing the halls on a chair in the hands of a skilled doctor, but I had no choice but to "roll with it" -- literally. And roll we did, straight to x-ray, where we were again delayed by some sort of technical difficulty. By this time the doctor was flustered, I was thoroughly confused, and my family was a bit overwhelmed. My father took a stance in front of the x-ray door to give running commentary. I turned wheelies in the waiting room. My mom and sister stood, alternately chuckling and looking completely out of their element. And, of course, all of us wondered whether this would finally be the real deal.

At this point, I have a confession. I was convinced that this would be another dry run. There, I said it. My thinking was that if so many totally smooth attempts had been unfit for transplant, surely this one with all the hectic running around and the high risk lungs would never end up being "THE Call," right? I had literally all but written off the night altogether, and was just wondering what time we would be released to go back home. With every call the doctor received from the team downstairs in the OR, I was convinced we would learn the transplant was off.

But that call never came. We made it to the OR holding room shortly after leaving x-ray and finally began to receive the IV antibiotics and anti-rejection meds that had been ordered pre-surgery. At this point I was finally placed on a gurney and given pillows and a blanket. As I watched anesthesia prepare their portion of the pre-op, I suddenly began to believe this was real. There was no back up this time around. I looked at my family and thought, "oh wow, it really is going to happen like this." that was, I believe, my last full thought before the phone in pre-op rang and the the doctor came around the corner to tell me it was time to move into the OR to receive my new lungs. I received hugs and kisses from my elated and shell-shocked family and shed a final tear of total gratitude that this was finally happening. Then I was whisked off down the hall once again, my family remaining behind to take their seats in the waiting room.

My surgery started in the early AM hours of Saturday, June 12, 2010. Only 5 short hours later they would learn that I had my new lungs, that all had gone well, and that I was in fact already awake in the ICU. My new life was ready to start.

And I was ready to greet it.


  1. Wow that sounds so hectic and yet so perfect. Who would have thought after all the stress that your whole family would already be with you when you go 'the call.' - Can't wait to read more of the story.

  2. WAIT! Your surgery was only 5 hours! Amazing! And, June 11 is Matt's birthday ;)

    Can't wait to read more!


  3. yay! Love reading everyone's own experience! Glad you finally got YOURS! :)

  4. that moment right before you are wheeled into surgery and you say goodbye, is my most dreaded moment!!!!

    Love the story and can't wait to

  5. Hi Piper,
    Thanks for giving us the entire play by play. I was hoping you'd share all the details with us! We're so very happy for you and can't wait to hear more about your experience.
    Jen and Jerry

  6. Thanks Piper for sharing YOUR story. You are a truly skilled writing and hearing it so wonderful. CAnnot wait ...

  7. I guess we learned that smooth preparations didn't work for you--you need more excitement! I am thrilled to read about your experience--and a bit nervous I must admit. I hope hearing about others experiences will help me get more comfortable thinking about mine in the future. Thank you so much for sharing.
    ps. If you were full of lobster, how do they handle that "don't eat 10 hours before surgery" thing? Just a weird pondering moment...

  8. Wow, this is great Piper! Can't wait for part II.

    Just curious though... why the last minute Xray of your lungs? Or are they looking at your bones and other stuff?

    But only 5 hours in surgery!?!? That's incredible. I thought it was a much longer process! That sure is an eye-popping tidbit you buried at the end! :)

  9. WOW!
    Thank you so much for writing this.
    Following your journey has peaked my interest in learning all I can about tx. I have always known I would choose this route (God willing) if/when the time comes in the progression of my CF. Nothing can ever fully prepare us for the magnitude of the process but knowledge is power.
    Thank You Cyster!

  10. The writing is wonderful and the journey described is so human and so blessed. Thank you for sharing your story, Piper.

  11. Completely leveling,

    I do a lot of reading, and I love for things to really move me and stir deep emotion. When I read this "post" being from someone who has just went through a life changing procedure that I will almost definitely have to go through myself, it moved me in a way that only a handful of writings have....

    Absolutely amazing Piper...