Wednesday, May 26, 2010

The Truth about Waiting

(Or; Why I'm Not in the Fortune-Telling Business)

First off: okay, um, wow? Can I just say that the response for t-shirts has been AMAZING? Who knew so many people were in the market for a new set of lungs (or, you know, a picture of them at least)? Anyway, here's the deal:

*The shirts are officially no cost. I know we all have enough to deal with in terms of payments and financial worries, and I don't want anyone to miss out on the opportunity to give my blog free publicity -- er, I mean to own a beautiful and timeless piece of fashion history -- because of cost. So no charge for shirts.
*If, however, you would like to make a donation toward the cost of printing and shipping, I would be thrilled to accept it. I'm working on setting up a paypal account for that purpose, or simply e-mail me and I'll send my address along for cash/check donations. Just as an FYI, the cost is about $10/shirt, so please limit your donation to that.
*Some people have asked about toddler/child sized t-shirts. As of right now I have two people interested in receiving shirts for their little guys. I'm working on finding a provider willing to print youth sizes with no minimum order, so if you're interested in showing off your kiddo in style, please let me know.
*OFFICIAL DEADLINE for shirt orders is Friday, May 28th (good catch, Jenny!). Sorry about the short notice, but I want to get these printed and sent out ASAP.

Okay, so we're cool on the shirts.

It's been about a month since my last official call, and I'm definitely starting to get restless. Don't get me wrong, there's a part of me that's grateful for the extra time to get everything in order, but you can only repack your hospital bag a certain number of times before you start just wanting to get it over with, already. It's crazy to think that headed into April (with two dry runs from March already behind me), I was absolutely certain that I would have new lungs within the month. Well, okay, so that's not entirely true -- I haven't gotten so cocky yet that I believe I can predict the future, but I was pretty sure the "real" call was coming soon. And now to suddenly find myself at the end of May and still with my CF lungs, well, let's just say I won't be setting up shop as a fortune teller anytime soon. It's humbling, when you think about it, to realize just how uncertain this whole process is. One month you're getting 1-2 calls every week, and then a whole month passes with no lungs available for you. Frustrating, for sure, and also a reminder of why it helps to be on the healthier side of the "transplant window" going into the waiting experience. Lungs don't always come when you expect them, or when you want them . . . there's more to all of this than I will ever understand, but I know I'm grateful to have time to wait, for now at least.

Anyway, after weeks of trying to stay relatively close to home and obsessively checking my phone every five seconds in case I somehow missed a call, I finally woke up and decided that's not the way this relationship is going to go down. After 4 canceled dates and now no calls for several weeks, I'm pretty sure I could do better. No, I'm not switching centers, if that's what you're thinking. I'm still happy overall with my choice and love my doctors, so that's not in the cards anytime soon. Instead, I've decided (again) that it's up to me to actually live my life as best I can during this period, despite the uncertainty of it all. I say "again" because you may remember that I already had this brilliant revelation months ago, but it's all too easy to forget your vow to keep living when the call seems imminent.

So yeah, all of this is a long way of saying that I'm now daring lungs to come and ruin my plans. I've been planning meals out with friends, trips to the Cirque du Soleil, parties at my apartment, and even a couple of day trips. On Monday my mom and I took the train out to New Haven, CT to see my wonderful friend graduate with his (second) master's degree from Yale, and then yesterday we rented a car to travel out to Woodbury Commons -- a truly amazing upscale designer outlet center -- for some shopping and a little fun outside the City. True, we brought enough O2 with us to cover if we got the call along the way, and we're still staying within a couple of hours of my center, but it's still nice to be able to actually make plans and follow through with them.

I think it all goes back to the concept of "readjustment" that I wrote about a few posts ago. For me, at least, there was this huge adjustment when I finally accepted that transplant was on the horizon for me, and then again when I actually went on the list and realized that lungs could technically come for me any day. As my father put it "we went from desperately hoping for a cure to desperately hoping for a fresh set of disease-free lungs" within the span of a couple of years (although obviously we're still hoping for a cure -- we will beat this monster even though to do so wouldn't "save" my lungs at this point). Talk about a major shift in expectations. But I still don't think it compared to the adjustment that took place after my first dry run, when we all suddenly woke up to the hard reality that this could, in fact, happen at any moment, and whether we were prepared or not wasn't going to make any difference to the lungs when they finally arrived. So we went into intense transplant mode, which continued hardcore until the "damp run," at which point we kind of shrugged our shoulders and decided that we had, in fact, seen it all and were literally as prepared as any family could possibly be. So we waited, and waited, and then the adjustments began again as it began to dawn on us all that 4 dry runs does not a transplant make. In other words, each day is a new day, with as much or as little of a chance of a matching donor as the day before it, and expectations don't mean much when the whole thing is out of your hands.

And so I decided to readjust one more time: back to life, back to being grateful for every new day with the lungs God gave me, and back to focusing my energy on the things I can control, rather than spending all my time thinking about something that is going to come when it comes regardless of what I think about it. I figure if time flies when you're having fun, the least I can do is try to speed up this waiting a little bit.

And, in the meantime, if any lungs want to come along and crash my party, that's just fine by me.


  1. Since Friday, May 21st has already passed, I'm wondering if maybe you mean May 28th?

  2. 1 Medium please, Pipes! :-) I assume May 28th as well. I'll watch for the paypal link. Lots of love and peaceful things.

  3. I am right there with you on several levels:

    a) must.make.shirts.
    b) more partying, less worrying
    c) more partying.
    d) more. partying. (and by that i mean quiet dinner dates, movie nights, and small gatherings at my home which I call "Porch Partayyyyy"s.
    e) my father is toying around with booking a very expensive, nonrefundable family cruise to ensure my lungs by summer's end. (they would come on the day we're supposed to leave).

  4. I like the idea of the nonrefundable trip! LOL! I was planning a wedding and hadn't received my lungs yet. Somehow, I knew that it would happen before the wedding! did!

    Piper, do you need a size for my shirt? Are they general unisex shirts? Probably S, if so. Unless they run small, then medium. LOL. I am such a PITA!


  5. for me when I was first activated on the list everyone was on top of there phones all of the time thinking we would get the that its been 2 years (with NO dry runs at all) everyone has kind of gotten lax about the whole thing. Until this past tx clinic where they raised my LAS so now I am a little more alert when the phone rings again hoping that the higher score means I will finally get the call! But it still does not stop me from doing any and everything I want to do because if it did I would have been sitting in my house for the past 2 years missing out on wonderful friends and life in general! This is OUR year I can feel it and its going to be fabulous! :)

  6. haha. love the reverse psychology approach. and it's true... time does fly when your having fun! that's gotta make waiting go so much better

  7. Piper, i
    If i could, I would give you a part of my lungs! It sucks not knowing to put it lightly! I agree with the non-refundable trip. If anything, it will still get you out and about! We think of you EVERY day SEVERAL time a day and cannot wait until we can meet with some new sets of lungs! Hugs and kisses from both of us!!!

  8. It scares me sometimes how much you think the things I am thinking! I don't blog enough in general, and certainky not enough about CF and the waiting game. (I am actually waiting to wait, which is different but weird in its own way!) Luckily when I want someone to understand this whirlwind of emotions, I can simply direct them to your blog. :-)

    You are very well spoken and you are able to express the minutia of having CF and the whole transplant process in an amazing way. Thank you, AGAIN!, for sharing so much of your story!

    Go on and readjust all you need to, keep living and enjoy the ride!
    Hugs to you....