Broken Record

Over the past few months (um, 8, in case anyone's actually counting), I have had a lot of time to observe the weird inner workings of this process we call "waiting for transplant." It's definitely a crazy system, filled with its own quirks and politics and lifestyle adjustments. And one of the strangest of these that I've identified so far is something I have come to term "broken record syndrome" (BRS).

BRS, I have learned, is a highly contagious disorder characterized by an almost compulsive need to repeat the same stories multiple times, often to the same select group of people. This nasty little critter feeds on the curiosity of well-meaning friends and relatives and, oddly enough, on facebook status updates, which cause it to multiply and spread at a startling rate. And, like most opportunistic infections, BRS is far more common in the chronically ill, and more common still in those of us faced with a life-threatening and yet life-saving surgery. It also seems to inevitably flare up after each successive dry run. Interestingly, although BRS involves the retelling of the same story over and over (and over) again, another odd symptom is that the story itself seems to vary significantly from one retelling to another. At times BRS makes one prone to wild exaggeration, turning a simple dry run into a near-death experience replete with crazed anesthesiologists and dramatic background music. Other retellings of the same experience involve an almost laughable apathy and lack of emotion, reducing the 10 hour ordeal to a mere run-of-the-mill night at the hospital during which you just happened to be poked with 4 separate arterial lines. And neither story is inaccurate, as BRS apparently makes one as prone to mood swings as you might expect from a large-scale prednisone taper.

At this point I'm fairly certain that I have one of the most advanced cases of BRS ever recorded.

In fact, BRS has now spread endemically throughout my apartment -- not even my sister or father (who live the majority of their lives outside my 18th story domain) seem immune to its grasp. Case in point: the other day I was vigorously retelling the story of the "little dry run that wasn't" to a friend over the phone. For those of you unaware, this tale refers to a call I received last Wednesday afternoon, that for various reasons did not result in my receiving new lungs. But, since I never left my apartment, I refuse to count it as a true dry run, hence its title as the "little dry run that wasn't." At any rate, I was retelling this story (which I am aware that I just retold on this blog as well -- love the irony), and doing so in a particularly dramatic fashion, when I suddenly heard my mother's cell phone ring. Undeterred, I continued with my own theatrics, including tears and some choice words. It was at this point that I overheard snippets from my mother's conversation: "Wednesday," "lungs," and "transplant." It dawned on me that we were both repeating the tale to two separate people on two different phones at the same time, and both of us probably for at least the third time that day. It was, in short, a BRS code blue moment -- and a scenario that has become increasingly common in my tiny little apartment.

Don't get me wrong, it's not that we don't have anything else to talk about, really. It's just that everything else we might say -- "wow, my hair has gotten really long lately" or "Sampson seems unusually hyper this morning, maybe we gave him too many treats?" -- seems to pale in comparison to "ohmigod we got ANOTHER call last night and here's what happened and would you believe they did this and yes, of course we're still waiting and no we have no idea when the real thing will happen but wow can you believe we might get new lungs soon?!" I mean really, how could a hyperactive puppy compete with that kind of dramatic monotony?

As far as I know, there's really only two cures for BRS: 1) an end to the underlying condition (in my case, waiting for transplant), and 2) time. Right now I think I'd settle for the first of those, with the understanding that the second will eventually follow. And in the meantime, I hope you all can bear with me as I indulge my BRS on this blog, by phone, and perhaps occasionally in person. I promise that I will recover.

And as long as we're waiting, let me tell you a story...

(Birthday) Guest Blog: Father Knows Best

Guest Post Stats:
Name: Michael Beatty (aka Piper's dad)
Age: 63 as of TODAY!
Credentials: Lawyer/law professor. Father for 31 years, "CF dad" for 28. Active volunteer and advocate for the Cystic Fibrosis Foundation. Professional frequent flier. Granddad to Sampson the puppy.
Special Talents Include: Holding down the fort in Denver, traveling between Denver and NYC in less than 7 hours for multiple dry runs, trick bike riding.
Hometown: Denver, CO





We All Need Somebody to Lean On

Well, the call finally came. No, no, not that kind of call. After four dry runs, we've come to treat transplant calls with the same kind of excitement normally reserved for telemarketers. I'm talking about the call that my daughter made to ask me to write this post for her blog. Although Kathleen and Erin have both had their star turns, I have thus far been happy with my role catching planes, walking the dog, and providing comic relief with my bicycle crash. (Piper's editorial note: check out this post for the story of my father's bicycle antics.) Nonetheless, I will endeavor to offer my view of the life lessons learned on the transplant floor of Columbia Presbyterian last Friday.

A few days ago, Kathleen called my law office at the beginning of the Friday rush hour to tell me that she and Piper were headed to the hospital (again). My office staff flew into an organized frenzy and got me out the door with a boarding pass, some cash, and one hour to make it to the airport and catch the plane. I made it only because several drivers were nice enough to allow me to cross several lanes of traffic to get to a less congested side street and other people let me cut to the front of the security screening line. I boarded the plane as the door closed and made it not only to NYC, but all the way to the hospital before Piper was even take down to the OR holding room.

As Piper has already explained, the OR holding room is where both the primary and the back-up wait for word on the condition of the lungs. Like "Let's Make a Deal," both families wait together to see what is behind Door Number 1: a double lung for our daughter, a single for another family's loved one, or sometimes just a disappointing judgment call on the part of some very wise doctors. In the best case scenario, one family will win new lungs, while the other will go home without so much as a consolation subscription to Good Housekeeping.

That night was no exception, as we waited for the decision with the back-up, a retired NY policeman, and his sister. And, as we waited, we were privileged to learn his story: how barely a year before he had been diagnosed with pulmonary fibrosis at his retirement physical, and received the shocking prognosis that he would soon need a lung transplant. He had been listed only earlier that week, and now found himself serving as the back-up to my daughter.

Although he probably didn't know that being a back-up to Piper seems like a virtual guarantee that you will get new lungs at this point, he was, quite understandably, a bit nervous. I tried to put myself in his position and am pretty sure I would have preferred facing down Tony Montana and his "little friend" ("Scarface" 1983) rather than sitting on his gurney. Less scary. And, because we had done this all before and he had not, the natural reaction was to start a conversation and try to learn from each other.

From his end came a mixture of genuine concern for "the young woman with the beautiful smile" and the inevitable nervousness of someone about to face a surgery for which he thought he would have more time to prepare. From our end came the joy of having known many amazing transplant survivors mixed with the somewhat jaded consciousness that comes with a few dry runs. Piper, as usual, was gracious, engaging, and reassuring (she's going to hate that I'm writing this!). She assured him that it was probably worth the sacrifice of giving up raw oysters for the chance to breathe; she made him laugh by complimenting his stylish hospital getup; she re-framed a terrifying prospect as an exciting opportunity. And when the decision was made and the judgment came down that neither of them would be getting new lungs, she took heart in his positive attitude and good humor.

So these are my two lessons from the transplant floor: First, God always has a custard pie up His sleeve. You never know when a volcano will erupt, an earthquake will shake your foundation, or you will be told you need new lungs by summer. Life is full of surprises and not all of them are happy ones, so take the time right now to give your life meaning. Second, the best way I know of to find that meaning is to understand that we are all in this together. Whether you let a father cut in line to get to his sick daughter in New York, offer a comforting word to a Clint Eastwood cop in an unfamiliar situation, smile at the doctor who has just delivered you bad news, or simply offer up a silent prayer every time a blog post announces yet another call, you have grabbed a golden ring on the merry-go-round of life.

And when we can no longer challenge our circumstances, at our best we can still challenge ourselves and reach out to others. Because, as the song says, it truly won't be long until we're gonna need someone to do the same for us.

When There Simply Are No Words

Pictures from dry run #4:

Let the waiting begin!

Mom does crossword puzzles to pass the time.

Off to the OR -- I snapped this from the gurney because I still had my phone.

OR Holding Area. Cute couple, huh?

In case you're wondering what you look like when they tell you no go...it's kind of like this.

I made mom wear the hat since the surgery was canceled.

Four. No Explanation needed.

My hospital bracelet, with the patient ID stuff blacked out (not that I don't trust you guys but, you know).

I'm a little bit sad and a lot exhausted at this point. Thank you again for all the support, and please keep the donor family in your prayers tonight as well. Neither of the lungs were good, so both the backup and I were sent home with our old airbags. I just also want to publicly thank the team at Columbia for being so discerning and cautious when it comes to doing transplants. If nothing else, I find it hard to believe that the lungs that are coming for me will be anything less than perfect at this point.

I love you all beyond words. Seriously.

Song of Myself

Okay, everyone, I'm back.

Seriously, I'm back. As in me, Piper.

Yes, I am aware that I have written a couple of posts in the past week and, no, I am not having an identity crisis (at least, not yet). That was, in fact, me writing -- but I'm not entirely positive how much of it was me. Meaning, I guess, that up until this weekend I've felt just a little bit out of myself and uncertain. I've been going through the motions, almost entirely focused on just recovering and regaining lost ground. I've been stretching my muscles and flexing my wings a little, uncertain of what would still work and what might be broken. And then I found that when I did start moving, I was still there, and it was still me, and eventually I knew that I would find the right moment to leave the ground again -- but it still took one or two hops before that finally happened.

And then, as of yesterday, I suddenly realized that I am back.

I'm back where I want to be physically, which I guess is kind of a bold statement right now considering that where I truly want to be physically is probably an impossibility with these lungs. But just being able to really move, and to walk, and to do gyrotonics again and feel my body opening back up and allowing itself to relax is, I'm not going to lie, almost like a rebirth. And that, in turn, has brought me back into so much better of a place mentally, so that I have been able to actually feel some emotion about what happened last week, rather than just simply bewilderment. The best part of all of this being that, after feeling some of that stuff (both good and bad, simple and hard), and after talking to some of my friends who have been so kind and supportive and entirely willing to admit that they don't understand but also entirely willing to try, I have actually been able to come to one overall conclusion about the events of last Friday night/Saturday morning:

It was absolutely fine.

Or maybe I should be a little more specific there. What happened last week was a very strange occurrence -- one of those weird things that might be listed on the consent sheet as a possibility, but that never really happens to anyone you actually know. Okay, so it happened. It happened and my team did the best they could to take care of me. It happened and, to be honest, the outcome wasn't even that dramatic, despite how it might have felt in the moment. I came right off the vent. I went home a few hours later. I recovered okay, with a few bumps along the way. And, most importantly, I made it back to myself -- fully and completely -- and I'm not angry, not super frightened, not shaken to the core. I was kind of expecting to be at least one of those things, weirdly, but I'm just not. I am, as ever, waiting for a transplant, grateful for the opportunity, happy with my choice of a center, and maybe just a little bit more bruised for the experience.

But then again, bruises heal. (Trust me, my wrist right now is living proof of the truth of that statement.)

I think we're all familiar with the tired old adage: what doesn't kill you makes you stronger. I'm beginning to think that what doesn't kill you, well, doesn't kill you -- and honestly that's enough for me. If there is any great lesson to be learned from this all, maybe it's just that unexpected and even bad things can happen, and when they do, it's not the end of the world. Things will eventually return back to "normal" (even if that normal looks a little different than before) and life will go on.

And eventually, when we're ready, we will all come back to ourselves.

New Post

I feel like I need a new post. Today is Easter -- a celebration of New Life and spring and grace and love (or at least that's how I see it) -- and if there were ever a day deserving of a new post, I think this is it.

Today was lovely.

Okay, so I don't mean to romanticize it. Today was not my most relaxing Easter, to say the least -- my throat is sore, my brain is still a bit confused and addled, my body has multiple holes in it that I keep discovering, and my oxygen is low. I'm tired, and drained, and a little loopy and beat up (but hey, you should see the other guy!). And to top it all off, my father went out yesterday AFTER the "damp run" and decided to blow off steam with a bike ride around Manhattan. All well and good until someone drives a van out in front of you and you end up in yet ANOTHER New York City ER getting stitches in your lip. And would you believe the man had the decency not even to call those of us back home trying to sleep off the ICU? He just got his stitches and rode his bike back to the apt. Needless to say we were all a bit befuddled when he sat down at the table with a busted lip and a sprained wrist. (On the bright side, it takes some of the attention away from me and my battle wounds!)

But today, of all days, truly was lovely.

Today I took my puppy on two walks, balancing a leash, a gimpy father, and portable O2.

Today I ate an amazing Easter dinner with my mom, my dad, and my amazing sister, with my puppy at my feet.

Today we finally talked about what happened, shared the funny stories about half-awake conversations and waiting room drama -- and were actually able to giggle at (almost) everything that went down.

Today I took a really, really hot bath.

Today was 75 degrees in New York, and I spent time outside with my puppy in the dog run, watching him play (or not play) with all his friends and neighbors.

Today my parents presented me with an Easter basket for the first time in years.

Today I breathed, perhaps not as deeply as I thought I would be breathing, but with lungs that still work and with air that means I am still alive.

Today I spoke with my wonderful doctor, again.

Today I did exercises in the apartment until I could feel my muscles starting to respond, and felt the fogginess sort of melting away.

Today I watched The Blind Side with my family. I loved it.

Today I learned that rebirth doesn't just come from transplant, or from great events, or from even that Ultimate Sacrifice that God made for us. Today I learned that sometimes new life just means waking up and seeing things a little differently -- knowing that even when things go wrong, even when we're a little beat up and a lot disappointed, we can still keep breathing.

Today was a really, truly, honestly, lovely day.

Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.

This is Hard

I'm not quite sure how to even sit down and write this post. Emotional roller coaster doesn't even begin to describe the events of last night, but I guess when in doubt, go with the cliche. And I guess in some ways, a roller coaster image is fitting: the highs and lows, the feeling of racing along a track over which you have no control, the slow motion of the moment contrasted with the whirlwind feeling you get when the ride is finally over, that whole "did that even just happen?" feeling of stepping out of the car.

This is hard.

Yes, this is Piper writing again. No, I'm not the world's most amazing recovery artist. Yes, that means I didn't get the lungs. The right lung, once again, wasn't perfect, and in this game you don't settle for any maybes. I'm so grateful to Columbia for being discriminating, for searching for lungs that are absolutely right for me, and for having the courage to pull the plug, even after 9 hours of build up, when the right lung just doesn't look...right.

Still, this is hard.

My right wrist is bruised beyond recognition from the arterial line -- a yellowish purple battle scar to remind me of the physical pain that is just a part of this process. My heart is bruised too, in a way that it wasn't after last week's dry run -- an invisible yet poignant scar to remind me of the emotional pain, the loss, and the tragedy that is also a part of this process. And, after two calls in less than two weeks, my hope is higher than ever that MY lungs are close behind all these rehearsals -- a beautiful light to hold onto to remind me of the beauty that is, of course, just a part of this process. It is all just a part of transplant -- such a miraculous, cruel, amazing, delicate, unpredictable science.

And it is hard.

So today I remind myself that hard doesn't always mean not worth it, and that for every "dry run" I've had someone else has been given a gift beyond measure. I remind myself that people are donating, that calls are coming, and that human kindness is flourishing and that strangers are constantly changing each others' lives through the simple choice to give not only of their money or time, but of themselves. I remind myself that it is not just my desire for new breath that controls this process, but a much wiser, more loving plan. I remind myself of all of this, and I promise to hold it all in my heart, to remember.

But, truth be told, it is hard.

The Hardest Part

Okay, so now that I've had a little time to decompress after yesterday, I've come to a really somewhat startling conclusion:

Yesterday might have been one of the best days of my life.

Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.

Okay, let me explain.

A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.

Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.

I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.

And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.

I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.

Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.

Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.

My Day: A CF Picturebook

Chapter 1: Lazy Morning
(Yes, he sleeps on his back. No, I'm not kidding.)

Chapter 2: IV Afternoon
(Alternative titles for this blog definitely included "Track Marks: Confessions of an IV Junkie." And in case you're counting, this makes 8 times this year.)

Chapter 3: Gyrotonics Evening
(Bad picture, good exercise. You can't really see here, but I had 40 lbs of weight going for each leg. Which we followed by full body squats, lunges, and some other major thigh and quad workouts. I had a lot of extra energy and a lot of motivation - you'll see why in a minute.)

Chapter 4: Bright-Light Night*
(For my transplant friends: yes, this is a FAKE tree. Beautiful, yes. Real, no.)

*Okay, this isn't quite a footnote, but still: thanks go to Victor for the grammar lesson.

Oh yeah, and in between all of that I kinda, sorta, maybe had a dry run for lungs. You know, the usual.

Stay well, my wonderful friends.