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.

I Spoke Too Soon

Well, I didn't get my shower, but I did get A CALL!

In the hospital now, all checked in and waiting. I've changed into my lovely gown, accessorized with a fabulous paper bracelet, and had lots and lots of blood drawn. Next stop: EKG, chest x-ray, and then down to the OR for final prep.

So far everything looks good, but I think we all know by now that it ain't over until it's well, over. My sister will of course be online to keep you all updated (although she herself is not at the hospital this time around thanks to a yucky cold virus). I promise that you guys will be as in the loop as we can manage.

As for now, this all seems kind of routine at this point. Guess there is an advantage to three dry runs (well, two dry and one "damp") after all. As always, prayers/light/good thoughts/and positive energy are all greatly appreciated.

I am so thankful for all of you, honestly. Hopefully next time I post it will be through a fun drug-addled haze...amusing for everyone!

xoxox,
Piper

Bumps in the Road

Well, it's that time of the month again. Oh come on, don't be skittish -- I know a lot (most?) of you out there know exactly what I'm talking about. You know that feeling of anticipation you get a couple of days before it actually happens, the emotional roller coaster, the counting down of the days until things can be "normal" again, the sudden resurgence of your appetite, and then . . . the moment of truth when suddenly it happens and you immediately have one single, solitary thought that quite frankly cannot be ignored:

I cannot wait to take a REAL SHOWER!

Seriously, guys, what did you think I was talking about? Sheesh . . .

Yep, it's official: I'm stopping IVs today. I got the go ahead from my wonderful doctor yesterday afternoon, and as if that weren't good enough news on its own, I also get to reduce my steroid dose down to 20 mg. I'm pretty sure this means that I'm now heading into the best part of Spring with no needle in my chest, far fewer antibiotic-induced sun issues to worry about, and a drastically reduced probability of severe mood swings. Seriously, who could ask for anything more?

The less good news is that I haven't had any action lately on the transplant front. I feel terrible complaining about that, frankly -- I know I've had more chances in a shorter period of time than a lot of my friends who are, by some measurements, even more in need of lungs -- but I want to be honest with you guys and I think you can handle it. This process is strange and draining, both physically and mentally. Two weeks ago to the day I was in the hospital, about to have my third dry run in less than a 14 day span. When I came home I was hoping for a couple of days "off" to recover and regain strength (again, both mentally and physically), but I was also convinced that the next call would come again quickly. And since then I have literally jumped every time the phone rings (especially the wrong number we got at 12:30 am, which is, I should note, the third such middle of the night scare we've had since this whole process started. Good joke there, universe!). But then the couple of days passed and I was relieved, and then more days passed and I was somewhat surprised, and now a whole lot of days have passed and I am really just kind of confused. Logically I of course know that this is normal, that often quite a bit of time can lapse between workable offers of lungs, but it's still tough to be in such a state of anticipation and then have to try and resume some sort of normal, run-of-the-mill routine.

Luckily, I've had lots of distractions in the form of sunny NYC days, a few amazing nights with friends and family, and even a fairly mischievous shorkie (whose latest antics include devouring an entire "wolf size" bone in a matter of minutes -- keep in mind he is a mix of two lap dog breeds -- and then proceeding to get sick in literally every. single. room. of my apartment). I'm also lucky enough to be feeling better, and to have a rapidly healing wrist that is more or less a normal color again even after all the drama surrounding the arterial line. Sure, it's not the perfect lungs that I had hoped to be breathing with by now, but it is something, and I'll take what I can get at this point.

I guess my main goal right now is just to find peace with this path I've been walking now for the past couple of years, bumps and potholes and steep hills and all. It's amazing to me how much of an emotional journey this transplant process has been so far, because for me that aspect of it all has been at least as difficult as the physical one. And yet, at the same time, it's my physical state that demands most of my time, energy, and attention right now. So it is, as ever, a delicate balance, and one that I've been lucky enough to navigate so far with only a few minor breakdowns. More than anything I've just come to believe that it's not so much the bumps in the road that define the journey, but maybe just the experience of doing the walking.

Walk on, beautiful people.

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.

Clinic Transplant

So today I had transplant clinic. It was (obviously) the first time that I've been in there since the now-infamous "damp run," so suffice it to say that we had quite a lot to talk about going in. I think everyone was looking for a little reassurance, and maybe just a little bit of an explanation. Mostly, I think we were all just looking to have a conversation -- to go in there and make a little sense of what happened and what is going to happen going forward. And that, friends, is exactly what happened.

Okay, I'm just going to throw it out there: I love my doctors.

Seriously, I love my CF doctor. I love my transplant team. I know that might sound like gushing (um, well, okay -- I know that does sound like gushing, because it is), but I really, seriously, honestly feel that I have one of the best teams out there. Which is not, I should mention, an objective statement on my part. While my hospital might be high on the national list for transplants, that's really not what I mean when I say that I love my doctors. Because let's be real here: there are good doctors everywhere, and there are bad doctors everywhere. So when I say that I love my doctors, I don't just mean that they're good at what they do (they are); I mean that they're really great doctors for me, personally.

To be perfectly frank about it all, I have to admit that I'm one of those patients who gets pretty attached to her doctors. I tend to find doctors that I like and stick to them like glue. But then again, it cuts both ways: when I don't like a clinic, I really, really don't like it. Luckily this has only happened to me once, the result was a frank refusal on my part to so much as step foot in the clinic, and it eventually led to the decision that it was better for me to travel all the way back to my old clinic several states away (as in, a four hour plane ride) than to remain in the care of a team that didn't work for me. Why? Well, simply put, because my health and my relationship with my doctor was worth it to me, and I know I'm lucky to so much as have that option. But I also have to stress one thing, in all fairness, and that is the fact that the clinic I deserted was not, in any sense, an objectively bad clinic. The nurses weren't evil, the doctor wasn't dumb, and the clinic itself was housed in one of the nicest facilities I've ever seen. It just didn't work out for me, and once I knew that, I knew there was no point in trying to resuscitate a dying relationship. And so I opted for a clinic transplant, if you'll excuse the pun. And I never looked back.

Fast forward to now, and, having moved once again and having switched clinics (successfully this time, though I'll admit not without some of my lingering doctor-dependency issues), I now find myself in a transition phase between my CF clinic and my transplant clinic. Currently my CF doctor continues to manage my care, prescribe my meds, and serve as my primary contact for whatever new issues might crop up during this pre-transplant limbo period. On the other hand, I've been seeing my transplant pulmonologist now for over almost two years (that never fails to freak me out, by the way -- how can it have been so long already?!) and I know that, post-surgery, he will be my first-stop physician on most, if not all, major issues. And sure, I'm extremely lucky in that my teams are concentrated at one hospital, allowing them easy access and communication, but I still can't help but feel a little bit of a flutter in my chest when I think about the second, unspoken transplant that's waiting in the wings right now: that ever-important move from one doctor to another.

Luckily, as I mentioned, I love my doctors. (Yes, I said doctorS, meaning both teams in their entirety.) And I know I love my doctors for several reasons that go beyond just the normal "well, they're really good and they know their stuff" type of logic:

1) No matter how sad/scared/tired/sick/upset I feel walking into that hospital, I almost always, without fail, feel BETTER walking out. No, this doesn't mean that they're magic and that they can chant a few words and make my symptoms disappear, but it does mean that they're addressing my feelings, my questions, and my concerns. They listen to me, they offer me an explanation or a treatment or a calming word, and it works. It works because, on a deeper level than just conscious thought, I trust them. And a large part of that trust comes, I believe, from knowing that they honestly want to listen to me and to make me healthy.

2) I know them. This is huge for me, and maybe it's not as big of a deal for other people, but I still think it's worth mentioning. My CF doctor referred me for transplant early. We weren't sure, at the time, exactly how early we were -- meaning that we didn't really know how fast my CF would progress from that point and so had no idea whether we were jumping the gun by a year or 10 years -- but we knew that I wasn't ready to be listed.* As a result, I not only got the testing out of the way while I was still healthy enough to deal with it and not flip my lid (yes, I believe that's the technical term), but I also got some time to get used to this scary "new doctor" presence -- to meet him and to have several appointments to get comfortable before I actually had to commit to something like, you know, getting my lungs removed. Because I personally don't feel that's a great recipe for a first date, but then again maybe that's just me.

(*Oh, and by the way, we ended up being almost exactly one year "early" on the lung transplant referral. My first appointment was May 2008, my CF doctor recommended listing in April 2009, and I was actually listed in late August 2009.)

3) I just follow my instincts. Seriously. The first time I walked onto what would later become my college campus, I knew I wanted to go there -- it just felt right. The first time I saw what would later become my puppy I knew I didn't want to keep looking -- this was my little guy. And the first time I walked into my transplant clinic I was pretty well sure that I could work with this group, and that they were going to help me get my new lungs -- it just clicked, for lack of a better word.

Sure, it made a huge difference that my CF doctor had recommended this center, because I trust her 100%. It also didn't hurt that the transplant team had a great national ranking and overall success rate, because what kind of a fool would I be not to care about those numbers at all? But, quite honestly, I had heard some bad things about the program as well, and I always knew it wasn't perfect. In the end, what made the difference for me between success and, well, "rejection" wasn't so much the numbers or the referral or anything I had read online. It was just my sense that this team and I would work well together, and that I would one day be able to type the words "I love my doctors" with complete and utter honesty.

Which, you know, is a really, really good thing. Because when all is said and done, I would go through a million "dry runs" to find the transplant (and the clinic) that works best for me.

A Matter of Great Importance

Okay guys, this is me.


No, I am not posting this so you can laugh at the puffy doctoral hat (although it is one of the weirder traditions in academia, I'll admit). No, I don't think I look awesome in "Columbia University Blue" (although I look darn good in the Columbia hospital gowns, if I do say so myself). And, believe it or not, I am also not posting this to showcase the goofy smiles my family tends to adopt in posed "proud moment" photographs (although that could be a post in and of itself, I promise).

Honestly, I'm posting this picture because it was one of the proudest moments of my life. Because it captures the day when I graduated from law school, CF and all. It captures my family (sans my wonderful sister, who may well have been behind the camera for this picture), and goofy smiles and all, it captures an instant we'd all dreamed about since I was young enough to toddle around starting arguments with people.

And, I'm also posting this because it relates to all of you.

I recently received this message in my inbox:

I came upon your blog and after reading “Quality Control” from March 7^th and seeing the way your parents stressed education and encouraged you to pursue your dreams, I thought you and your online followers might be interested to hear that the 2010 SolvayCARES^SM Scholarship contest is now open for applications through May 15, 2010 at www.SolvayCARESScholarship.com.

The SolvayCARES^SM Scholarship was created to honor young adults with cystic fibrosis as they pursue goals of post-high school education. In 2010, 40 SolvayCARES^SM Scholarship recipients will be announced, and each one will receive $2,500 for use during the upcoming academic year. To celebrate the 18th year of the SolvayCARES^SM Scholarship, this year's Thriving Student Achiever will be awarded $18,000 in place of the $2,500 standard award.

Please feel free to post this contest information on your blog and share it with your community as you see fit. You can find complete information on the scholarship at www.SolvayCARESScholarship.com, including a link to the 2010 scholarship application.

I personally know people who have participated in this scholarship, and I know it can mean a world of difference for CFers interested in pursuing college or graduate school. This year, as you can all see, it is even bigger. I can't stress enough what an honor it is for me to share this link, to encourage the CF community to go out there and get that degree you never thought you'd live to see, or that your doctor told you might not be possible, or that you just never had time to pursue. Because let me just tell you all, without hesitation, that these past few months have taught me the truth of what I always considered a pretty tired and overused cliche:

There's no time like the present. Seriously.

I hope all of you will consider applying, and even more that you'll consider (with gusto) all of the many, many options open to CFers when it comes to life, education, and career. And, perhaps selfishly, I hope that you'll all take lots of pictures along the way.

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.

Bad Saturday

alright. so the doctor just came in to tell us, that after putting her to sleep, after putting her on the vent, after the epidural, they realized the lungs were in fact not good.

she's apparently now awake, off the vent, mildly jovial from the drugs and aware (though perhaps not fully comprehensive) of the fact that she did not receive a transplant today.

we'll see her within the hour. i'll let her fill in the additional details tomorrow. send her love and the strength, patience and positivity. perhaps one day, soon, with her strong new lungs we'll look back at this and laugh and thank god that she didn't get those lungs, but rather the lungs she will soon receive. those that will carry her forward.

Wheeled Away...

i'm erin!

first of all, in my brief fifteen minutes of blogette fame, i want to thank everyone who reads piper's blog. you're such a wonderful source of support and we are all so very grateful.

so, as of an hour ago they took her into the OR for final prep and the epidural. they speculated that the lungs would arrive around 2am-however the operation has likely started already. the moment she received the call she claimed these were her lungs, she could feel it.

although significantly less eloquent than pip, i will do my best to keep the updates coming. i'm not really an ace at this, so if i'm not responding to comments and whatnot it is either a) that i can't figure out how or b) that i'm with her or sleeping.

keep the positivity coming. i swear we can feel it! xx.

Drumroll Please...

...It's a GO!

99.9% certain at this point that these lungs are IT! I'll be headed down to the OR in just a few minutes, but I wanted to stop by one more time and send my love and thanks out to all of you. Please keep the thoughts/love/light/prayers/vibes coming -- they are WORKING!

This is going to be good. I can feel it.

In the meantime, my lovely big sister Erin will be here to keep you updated.


Much love, beautiful people.

Piper

Good Friday, GREAT Lungs!

Okay guys, third time's the charm, right?

I got THE CALL for new lungs at 2 pm and somehow I just know these lungs are right for me. I am here at the hospital and feeling SO good about this time, so at peace, and so happy. Today is Good Friday, it's a new season, and it's spring: truly a time of new life, new breath, and REBIRTH. I am so excited!

Thank God for this wonderful, wonderful miracle. And please keep the donor family and the donor in your thoughts and prayers as you send them love and light during this period of loss. I am praying that they have as peaceful a transition as possible, and that this holiday weekend -- a true time of New Life born from ultimate sacrifice -- may bring them the knowledge that their great gift is truly a blessing for so, so many.

My sister will update as possible once we know more and while I am in surgery receiving MY lungs! As always, thank you all so much for your love and support -- I feel so lifted up right now (as I have for the past few days), and I know that is all thanks to you guys and the prayers that continue to come from all over!

Much much love and light to all of you for this beautiful weekend!

xoxox,
Piper