Friday, April 23, 2010

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...


  1. While it's not the same story, I have been doing the same thing in my house. My story includes "Muppet", "blog", "kids", "CF", "fundraising", and "positive thoughts for people".

    Lately, it's been hard to pull myself out of the "CF Community" part of my life and talk about other things. I can't even imagine how hard it must be when you are dealing with something that's the magnitude of your particular case of BRS. Be peaceful with the thought that some day (very soon) your case of BRS will include different symptoms and words like "rehab", "post TX", "long walks with Sampson" and "climbing Mt Everest tomorrow."

    Peaceful and Green/Blue Things. ;-)

  2. Don't question your thoughts and your expression of them... know that every time you share.. even if it seems like a repeat to you, you are helping a tremendous amount of people. Be you and never change!

  3. haha, your such a funny writer. Love the BRS lol

    -Laura M.

  4. Even with all the serious things going on, it's so nice to hear your witty sense of humor! So funny!

  5. As a recovering BRS stricken person, I wholeheartedly concur that as disturbing as this syndrome is, it is nearly impossible to stop-- especially during times of high physical drama. So don't fight it--let it flow. Remember, this too shall pass--well, until we come down with something else worth telling over and over and over and over and over....
    Wishing you a speedy recovery. Sherri

  6. Piper, I absolutely love reading your blog! Our family has been praying for you and I hope that some day you get cured of your BRS. (Although I'm sure all of us have cases of it every now and then). Until that day comes, we welcome any outbursts that your BRS may cause. :) Good luck with everything and we will continue to keep you in our prayers!

  7. Is it bad when you click on the label "Dry Run", scroll to the bottom, and see "Older Posts ->"?

    I promise it will end soon (in a good way) - promise!!!


  8. Piper, I love reading your blog. My mom is waiting for a double lung transplant in Toronto, also for eight months. We've had one dry run, I can't imagine going through four. Your strength is awesome. Hope to hear good news soon :)


  9. Hey Piper, I recently saw your facebook updates and saw your blog about your transplant. Wishing you all the luck in world for a transplant and a speedy recovery! Good to see you have your great sense of humor through all this.

  10. So glad you are sharing your BRS with us, lol. Hang in there. I am adding you to my prayer list :) Someone asked me about my son yesterday and my thoughts went to your blog! Made me smile inside even though the subject matter always makes me tense :)

  11. Piper, I have to warn you. BRS doesn't end when you can breathe again. The record merely changes...but at least it's a different tune and it's much catchier than the other record :)

    Let's dance!!!