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.

Here We Go Again...

So after a day of IVs, shorkie time, working out, and random blog musings on the waiting game, it looks like it's time to try again for new lungs. I got the call last night at 11 pm and it's not 1:20. I'm checked in, have a hospital bed in a single room (after much confusion stemming from the fact that only doubles were available and I am, of course, on contact isolation), have just gotten a lovely IV in my right hand (literally in between typing that last comment and this one), and am dressed in a stylish-beyond-all-reason hospital gown. Fantastic.

This is what I know so far: 1) the donor is neither high risk nor cardiac death, 2) the donor lungs are CMV positive -- since I am CMV negative this means I will be on anti-virals (IV and then oral) for a period after surgery), 3) there is, as always, a back up family here in need of a single lung. The resident is on her way up to talk to me about other details, but I'm guessing that if all goes well the surgery will be scheduled for the early morning hours of Wednesday, March 31. All good vibes, prayers, thoughts, and anything else positive you can send our way are of course always welcome.

I just want to say again how thankful I am for all of you. I love you all and I'll be blogging again on the flip side. No sleep 'til new lungs!

Much love and peaceful, prayerful moments,
Piper

This Unfolding

Rain courses down the living room window next to where I sit, typing these words by the grey light of a cloudy city day. I've always loved the rain, for some reason -- never complained about the afternoon thundershowers that so dominated my childhood summers in Colorado, even as the flashing lightening and deep booming echos startled my horses and put my swimming lessons on hold for the hour. And even today, with the mountains replaced by towering buildings and the frightened horses giving way to honking taxi cabs, I still find rain more beautiful than irritating. It's something about the peaceful rhythm of its fall from the heavens, or the eerie magic of a mist-filled skyline that does it to me, I guess. Or maybe it's just the confirmation of yet another cycle: water from the sky to the earth, the changing of the seasons, April (or late March) showers drifting slowly into the promise of May flowers...or so I'm told, anyway. There's just something about rain that makes me want to savor the moment.

Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.

My life.

It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.

Yep, there is definitely that part of me.

But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:

The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.

The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.

The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.

The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.

The moment I was offered a chance at new breath from a stranger.

The moment I relinquished my chance at new breath into the chest of another stranger.

The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.

The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.

Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):

"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983

Neither would I.

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.

Bittersweet

Wow, thank you so much everyone! I have honestly never felt so loved and lifted up in my life. I guess it's true...you CAN be thankful for dry runs!

Speaking of which, I'm typing this from the OR holding area. The right lung was bad so the left lung went to the sweetest old man. In a weird twist, we were right next to each other in the holding area and his family came over to congratulate us and wish us luck (since we were the primary they assumed we would get the lungs). When the doctor came and told me the news, I actually got to look around the curtain and give them the good news. They all started crying -- it was so incredible, so bittersweet, and so miraculous! A moment to remember for the rest of my life.

I saw the family getting the heart as well.

Since I personally know firsthand the power you guys have to make a person feel held close, I'm asking that you please keep a grandfather, his wife of 46 years, and his son in your prayers today as they embark on their new journey of life and breath. At one point they had the 6 year old grandson on speaker phone to talk to his granddad before surgery. Wow.

And who wants a bad right lung anyway, right?

I can't thank you all enough for all the prayers and good thoughts. I know my lungs will come at the right time for me. Just a matter of trust at this point.

It's a Great Day for NEW LUNGS!

Att 5:30 this morning my phone rang, and I knew instantly that this was "THE Call." Honestly, who else would call at 5:30 am on a Sunday? Certainly none of my friends, anyway. So we grabbed our bags, said a quick "I love you" to the shorkie, and were out the door. And into...a half-marathon.

Actually, to be fair, thehalf-marathon hadn't actually started, but that doesn't mean it hadn't already worked a number on my planned hospital route. See, today is the annual RoadRunners Half-Marathon in NYC, and it actually ends across the street from my apartment. Needless to say it took us a little while to negotiate our way up to the hospital -- my personal favorite moment was when my mom leaned out the window (over me) and started trying to explain to a NYC cop that we were on our way for "emergency surgery." He was sympathetic, but not much he could do.

Anyway, we made it up safe and in one piece without mowing down any runners on the way. I'm slightly overwhelmed right now (um, make that EXTREMELY overwhelmed) and have just been kind of in a daze all morning. But I'm checked into my room, I have an IV firmly in place in my wrist, I've had my EKG and they've taken about half my total blood supply, and I'm dressed to impress in a lovely hospital gown.

Surgery is tenatively scheduled for 2 pm, assuming this is a "go." I have a good feeling about this, and my sister will update as she is able. Thoughts, prayers, and of course all the love you can spare are always welcome.

Catch you guys on the flip side. I love you all :)

Because Inquiring Minds Want to Know

Some Real Facts about CF and Transplant:

• As of March 12, 2010 (the last published data update), there are 274 CFers on the national organ transplant waiting list. 248 of these CFers are awaiting double-lung transplants. 30 are awaiting liver transplants. (Source: Organ Procurement and Transplant Network Data)*
  
• 153 of these CFers are in the 18-34 age group. Of the remaining 121 cystics-in-waiting, 72 are older than 34 and 49 are younger than 18. (Source: Organ Procurement and Transplant Network Data)*
  
• According to the CF Patient Registry, nearly 1,600 people with CF have received lung transplants since 1991. (Source: CFF. Note: I have no idea what the end-point on this data is, although I know it to be at least 2003 or later.)
• Living lobar lung transplants (where part of a lung is taken from each of two living donors and transplanted into the recipient) is still an option for some people with CF. In 2003, 17 people with CF received their miracle from living donors. That same year, 126 CFers were blessed with the gift of life from deceased donors. (Source: CFF)
• As many as 90% of people with CF are alive 1 year after their double-lung transplants. (Source: CFF. Note: I'm again unsure of the date for this statistic, aside from the fact that it is 2003 or later. The average survival rate after transplant continues to increase as newer and more effective treatment options and transplantation techniques are developed.)
• After transplant, the new lungs will never again "have CF." People with CF who receive transplants will still have CF in their pancreas, sinuses, intestines, liver, sweat glands, and reproductive tract. (Source: CFF)
• Almost everyone can be an organ donor. There is no medical condition, age, or race that automatically excludes you from all potential organ donation (even HIV positive people can donate to others with HIV, for example). All major religions in the US support organ and tissue donation. (Source: Donate Life America Fact Sheet)
• You can register to become an organ donor in your state here: Donate Life America
• People with CF living after transplant can: run half-marathons, be professional athletes who have carried the Olympic Torch, follow their dreams as an actress, raise children, get married, become "Heroes of Hope," volunteer, have careers, finish school, write a book, make a movie, learn to surf or scuba dive, live for 20 years (and counting) after their surgery, make a difference, ski down or hike up some of the tallest mountains in the country, advocate for other patients with CF or chronic illness, or...well, you name it, we do it. (And yes, I honestly know -- or know of -- people in every single one of those categories.)
  

And, the coolest fact of the day by far...

• One of my personal blogger friends with CF received her special gift of life last Wednesday night! So make that 273 people on the waiting list!

*Note: These statistics count the total number of candidates, meaning that individuals listed at multiple centers are counted only once. Also, I am including the table below due to issues with the source link for this information. All data can be found in its original form by conducting a search on the United Network for Organ Sharing website, and is compiled by the Organ Procurement and Transplant Network. The first column represents total numbers; the third column represents liver candidates; and the seventh column represents lung candidates. All other columns represent additional organs, including pancreas, kidney, heart, and intestine, as well as multi-organ transplants.

Cystic Fibrosis	All Ages		274	0	30	0	0	0	248	0	0
	1-5 Years		2	0	1	0	0	0	1	0	0
	6-10 Years		6	0	0	0	0	0	6	0	0
	11-17 Years		41	0	11	0	0	0	31	0	0
	18-34 Years		153	0	16	0	0	0	140	0	0
	35-49 Years		62	0	1	0	0	0	61	0	0
	50-64 Years		10	0	1	0	0	0	9	0	0