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...
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
Want to Contact Me?
Please email me suggestions, thoughts, comments, or criticism. Seriously, I love hearing from you guys!
Send all emails to:
- ► 2013 (30)
- ► 2012 (36)
- ► 2011 (42)
- ▼ April (14)
- ► 2009 (105)
Alternative Medicine Anniversary Antibiotics Anxiety Artwork Attitude Awards/Opportunities Awareness Bacteria Birthday Bronch Career CF Clinic CF Community CF Story CFF Challenge Choices Clot CysticLife Death Diabetes Doctors Donor Bob Drugs Dry Run Education Evaluation Exercise Family Fevers Freematour Frequencer Fun Fundraising Goals Gratitude Great Strides Guest Blog H1N1 Healthcare Heart Hospital ICU Immuno-suppression IVs Lessons Life Listed Loss Marathon Meditation New Year New York Organ Donation Oxygen PFTs Poetry Polymyxin Port Positive Thinking Post-Transplant Prednisone questions rant Recovery Rejection Research Rock CF Sampson Scar Sick Girl Speaks Sickness Side Effects Solvay Cares Stream of Consciousness SVT t-shirts Team Boomer THE Call Therapy Transplant Transplant Clinic Treatments Vertex Waiting Weight Writing