Tuesday, December 29, 2009

Wrap it Up

Alright 2009, it's go time. As in, you're about to go join your brothers in the land of year's past, and I'm about to pack up all the experiences, memories, and yes, scars and go on to 2010 -- which will no doubt bring more experiences, memories, and yep, you guessed it, more scars. So let's say goodbye properly, shall we? In other words, let's wrap up yet another year of a life that defies all attempts at summary, with a disease that defies all predictability, filled with blessings that defy all expectation. Raise your glasses, here's to 2009:
  • January brings my first hospitalization/IVs of the year, which ends the day before I hop a train down to D.C. to celebrate the historic inauguration of our nation's first African-American President. Black tie, dancing, parades, speeches, open houses, amazing Ethiopian food, and an extra day to enjoy the Smithsonian Museums make for a pretty amazing start to one of the biggest years of my life.
  • February/March mark my second round of IVs, lasting 6 weeks and including my first experience with the dreaded gravity drip. I learn creative ways to hook up in the office without an IV pole, thanks to a coat hanger and some suggestions from friends that would have made Macgyver proud. During this time my amazing sister also celebrates her 30th birthday, a spectacular evening that involves cruising the tiny cobblestone streets of the West Village in a white, stretch Hummerzine. Oh yeah, we went there.
  • April: Hospitalization #2 and IV round #3. Things start to get tricky and my doctor suggests active listing for transplant. In a last-ditch effort, I take short-term disability from work and focus on seriously upping my exercise routine. In the meantime I also manage to host an Easter dinner for 8, despite a nothing-short-of-ridiculous fire/flood in my apartment building. Good times abound, despite the fact that I spend the week living in a nearby hotel with my mother (who flies in to help), my puppy, and my good friend the gravity drip.
  • May: IV free month! After I finish celebrating, I spend the rest of the time finishing my transplant evaluation (hello, heart cath!) and fundraising for Great Strides. My team raises over $4,000 and I am honored to also get the chance to join Amy down in Philly for her town's walk. Amy returns the favor and spends a fabulous weekend in NYC, complete with thin crust pizza and gelato. My friends adore her, obviously.
  • June/July: Two months, two more rounds of IVs, and the third hospitalization of the year. In between all this, I manage to sneak off to to Turkey for a couple of weeks, where I experience awesomeness in the form of my first hot air balloon ride, the caves of Cappadocia, the Turquoise Coast (complete with sea kayaking), the wonders of Istanbul, and some amazing quality time with family and friends. I also receive a crash course in foreign healthcare when my compressor fails to work overseas and I get the privilege of purchasing another in a Turkish medical supply store. Sometime during this trip I also begin to run fevers and experience other symptoms now recognizable as the beginning of the "Great Port Debacle of 2009." Remarkably, this doesn't put much of a damper on the trip, although my mother does move to NYC upon our return in order to help out before/during/after transplant. Sammy and I are beyond grateful for the help, the company, and the walks. Sampson celebrates by having his, um, "man operation." As this is only his first hospitalization of the year, however, I have little sympathy.
  • August: Sixth round of IVs, fourth hospitalization, and (most importantly) the month I am officially listed for transplant. I write this post to memorialize the occasion.
  • September: Leave the hospital, only to return less than 24 hours later to the same room, this time with severe signs of an impending crash. Luckily, cultures finally come back positive for a blood infection in my port, isolating the problem and giving us a simple solution: removal followed by antibiotics. Two tries later, I am minus the actual port-a-cath but still retain the catheter, which is literally sealed to my vein by scar tissue. Lovely. I am sent home on antibiotics with thoughts that the catheter can remain in until transplant, but readmitted a week later when the catheter is finally removed via vascular surgery through my shoulder. Everyone breathes a sigh of relief and I am given my first PICC in 9 years. This brings our hospitalization tally up to 7, but who's counting.
  • October: I stop IVs on the 1st and stay off for the entire month, giving me my second technically IV-free month of the year. Drama of the month comes in the form of an unplanned ER visit after a routine tx appointment reveals a clot around my PICC line (thus starting the "Not-So-Great PICC Clot Fiasco of 2009"). Sent home on blood thinners and learn WAY too much about transplant and blood-thinner use. Thrilling lesson, really.
  • November: Seventh round of IVs and 8th hospitalization for a suspected case of H1N1 that thankfully turns out to be nothing more than high drug fevers. Host Thanksgiving dinner at my apartment for my entire family, grandmother, godmother, best friend from college, family friends, and two of my sister's close friends. Turn 28 the next day -- amazing month and amazing year.
  • December: Eighth round of IVs brings the placement of my second port, this time in my chest like a normal cystic. Two dry runs for transplant (so far), and one gorgeous Christmas tree. Dad comes to NYC to stay until the transplant, reuniting the entire family and ensuring that my apartment is never empty or quiet. Sampson is even more spoiled by the presence of additional humans to pet and play with him. Life is good.
In 2009 Sampson turned 1, Gloria and Issac climbed stairs and Ben ran over 26 miles to help cure CF, and my parents celebrated their 39th wedding anniversary (congrats, guys!). Michelle Obama wore a shirt that my sister designed, my mother moved ~2,000 miles across the country in an obvious attempt to win the "best CF mom ever" award, and my gorgeous cousin Rachel got engaged to the love of her life while her brother welcomed yet another beautiful Beatty child into the world. Some friends gained new lungs and others gained angel wings. I lost a port and gained a port, fought through infections and laughed through recoveries, and somehow managed to eat my way to my highest weight since high school (although I think a lot of the credit there goes to gyrotonics). Jobs were left, new hobbies were discovered, and a whole lot of books were read to fill some of the new free time. My family learned (and is still learning) the true meaning of the word "patience," and also maybe the true meaning of the word "patient" in the medical sense. In short, it definitely wasn't a simple year, but at least it wasn't boring!

So thank you, 2009, for all you gave and all the lessons learned (even the hard ones); for the inspiration and the emotional roller coasters; for the craziness and the moments of sheer and total beauty; and, of course, for knowing when to say goodbye.

Hope everyone has a happy and healthy new year!


  1. Wrap it up...I'll take it.

    Great blog entry, Piper. What a nice way of summing up the trials and tribulations that made 2009 all that it was for you. When I look back on mine, all I can think is that it was a pretty shitty year, but I cannot forget my wedding, which was the one bright spot in an otherwise dismal year.

    Onward and upward in 2010!!

  2. Piper,

    While on leave from work you should seriously consider writing professionally. Constantly interesting and from angles you can't predict, I love reading your blog. Plus, anything that helps the waiting is a good thing. Stay well cyster.

    Kari (aka Dewgirl)

  3. Hey, Piper!

    My hubby got a Frequencer this week. Yea! He really likes it so far.

    Happy new year! Hope your new lungs come soon.


  4. I second that on you being an intriguing writer. It carries the perfect balance of honesty, seriousness, humor, wittiness, etc.

    I'm excited for your new lungs in 2010!

  5. Happy New Year Piper!

  6. Goodbye old year, hello new year...and new lungs!

    Love you girl and I know this will be your year with so many wonderful happenings that you are going to count it as the best year of your life!!!!!

  7. Hi Cousin....I had Isaac sit with me and read this entry, with mention of his climb. He was touched (as was I) to be included in your recollections of the year. We've got one month to get ready for the 2010 climb!

    We're keeping our fingers crossed, saying prayers and sending out all the positive energy that we can muster for the universe to find the perfect lungs and to bring them to you. Love you!