Sunday, December 26, 2010

40 years

On December 26, 1970, my parents, Kathleen Murphy and Michael L. Beatty, walked down the aisle to take their place at the altar and say their vows. It was the day after Christmas, they were in Abilene, Texas (where my mother had lived all her life and my father's family had lived intermittently throughout the years), and the day was so busy that neither one of them managed to eat anything at the reception. Fortunately for them, a thoughtful caterer had the foresight to pack them a double-portion boxed lunch of fried chicken to eat on the way to their honeymoon in San Antonio. Unfortunately for my dad, however, my mother ate the entire thing -- double portion and all -- while he drove.

And that little story, y'all, is what we down in Texas like to call "foreshadowing." The lesson being, of course, that while marriage might be a pretty fun road, at the end of the day there's always gonna have to be a few compromises if you want to survive the drive.

And survive they have, despite what some might call a pretty bumpy road. After 2 years of marriage my mom moved to Texas to accommodate his work, which was followed 2 years later by his moving to Idaho to accommodate her PhD. At 9 years of marriage, while they were temporarily working in different universities in separate states, my mother gave birth to their first child (and my older sister) and my dad's epic journey to try and make it from Wyoming in time for the birth has become the stuff of family legend. At 11 years of marriage they gave birth to their second child (yours truly, of course) and were told to "just take her home and love her as long as they had her" due to a fatal disease called cystic fibrosis.

At about 15 years of marriage they moved again, this time back to Houston for my dad's job, and 6 months later my mom moved back with just the two kids in an effort to stabilize my health. Thus began somewhere close to 9 years of commuting -- sometimes between CO and TX, sometimes further (like to MA while my mom received her third advanced degree) -- for my father, who nonetheless managed to be present for nearly every soccer game, horse show, or badly costumed school play. (Major kudos to BOTH of them for pulling that one off, by the way.) The separation ended at about 23 years, when my dad finally returned full-time to Colorado. Shortly thereafter, both my parents moved their jobs (but not their family) to a larger city in Colorado. Around 27 years they sent their oldest daughter off to college, and my dad began a family tradition by driving her cross-country himself, with pit stops at the Grand Canyon and Vegas on their way to Los Angeles. My own trip, 3 years later, would include stops all along the Deep South, including Abilene (the origin of this story), Shreveport, Jackson, and Birmingham en route to Atlanta. My mother flew out to meet the weary travelers at our final destination and help move into college, and both times my dad snapped a picture of the departing daughter walking away from the rental car on her way into the dorm solo, turning back for one last wave and a smile before beginning college.

If parting is sweet sorrow, then my parents have certainly worn that emotion into the ground. At 38 1/2 years my mom left again -- this time to stay in New York with me while I awaited lung transplant. At 39 1/2 years, my parents received the gift of knowing that the dire predictions of my original doctor were wrong, and this gift came in the form of the ultimate gift from some other family -- another set of parents, another spouse of another loved one. And at 39 3/4 years, my mother returned back to CO to complete that cycle -- though it was and is hardly the completion of their collective journey.

And now, at 40 years, they have been Texans, Idahoans, Wyomingites, Coloradans, Massachusonians, and New Yorkers; between them they have no less than 4 post-graduate degrees and have been lawyers, small business owners, researchers, politicians, professors, authors, deans, and honorary nurses; they have traveled to 6 continents and spent at least some time in pretty much any place you can think of; they have friends all over the world; they are loved and admired by many (myself included); they are two of the smartest and kindest people I know, by far; and they are still the parents of two living children and two very sweet dogs (and the "grandparents" to one pretty roly-poly shorkie).

Congratulations, Mom and Dad. Erin and I love you and can't wait for the four of us to celebrate 50 years together.

Saturday, December 25, 2010

Christmas v. The Beatty Family: A Case of Sleds, "Star Search", and Serious Overcrowding

Opening Statement

Good morning, everyone. So glad you could make it out on this chilly December 25th, 2010.

Christmas is that magical time of year when anything and everything seems possible. Everywhere you look people are talking about compassion, love, and spreading what they call "The Christmas Spirit" (which is, I have learned through the years, really just code for "The Way We Should Live Every Single Day of Our Lives", but I digress). Anyway, people are smiling, hot cocoa and candy are available in abundance, and for once in their lives even NYers seem to feel that it's alright to wear a monochromatic suit and a red stocking cap with a little pom-pom stuck on top. Meanwhile I saw not a single PETA volunteer on the street in protest of the obvious cruelty inherent in forcing artic deer to pull a fat guy in a flying sleigh into some seriously tropical climates. And that, ladies and gentlemen, is truly a Christmas miracle.

But even with all that aside, there's another reason why I really do adore this particular holiday. That reason, of course, is simple. Because for an inventive little kid with an overactive imagination and a knack for making up stories (even if said stories never make it beyond her own head, as is often the case), Christmas is, to put it mildly, A.Gold.Mine. No joke.

Or maybe it's just in MY family that Christmas is not only the most wonderful, but also the most comical, time of the year. Seriously, if something weird is going to happen (and trust me on this one, with my family something weird IS ALWAYS going to happen) there's at least a 75% chance that it will happen on or around Christmas Day. Coincidence? Maybe. Bad luck? Nope, I don't think so. Personally, I'm going to go with the theory that God finds us amusing, and therefore we're just a really great birthday present for his Son. You know, just a thought.

Anyway, I can tell you're not fully convinced, which means that I'm going to have to give you hard evidence to make my case. So sit back and enjoy, ladies and gentlemen of the Christmas jury, and please remember that the eggnog in the jury room is most likely spiked due to counsel's slightly wicked sense of humor. Enjoy.

Exhibit A -- The Runaway Sled:

One of the first Christmases I remember fully was in Colorado. At the time, we were what you might call "between houses" (we had just moved back to the state from TX) and I was probably about 4 or 5. Which, of course, made my sister slightly older -- she was somewhere either 6 about to turn 7, or 7, about to turn 8. But age aside, Christmas that year was AWESOME! Santa brought us both matching red sleds (a big deal in snowy Colorado) and we were super excited to try them out. Unfortunately, there were no hills in the vicinity, but no matter -- we lived on a mountain! And our driveway sloped straight down at basically a 90 degree angle! What luck! No need to ask permission, right? Mom and dad won't mind!

What follows is a pretty predictable story: girl meets sled, sled meets driveway, driveway meets truck. Ow. Note that my older sister was NOT on the sled at the critical moment for reasons that remain a point of contention (I think she sent me down as a guinea pig, she thinks I insisted on going first -- both are equally possible). Needless to say my mother wasn't too worried about the blame-game when a man approached her front door with me sobbing in his arms and uttered the phrase "I didn't mean to run over your daughter." Cue the ER, which I promptly decided was a great place to stop crying, stand up, and practice my "jazzercize" moves. Mom claims this was embarrassing. I think the only embarrassing part of the story is that any of us were into "Jazzercize." Ever. Hello, 1980s!

Exhibit B -- The Clumsy Reindeer:

And if, after that harrowing tale of driveways and jazz hands, you still require further evidence, please direct your attention to our next true story of Christmas Past. This one comes slightly later in the chronology, my guess is that I was around 7-8 at the time and my sister closer to 9-10. But even if I don't remember the exact year, I DO remember quite vividly the gift that my sister wanted.

See, my fashion-designer-in-the-making sister didn't want a sewing machine or a box of colored pencils. Nope, she wanted an official "Star Search" karaoke microphone with real voice enhancement and colored lights. Shrinking violet, she is not. Not to mention that this was the late 80s/early 90s, when everyone even semi-cool was perming their hair and lip syncing along with Milli-Vanilli. So of course, Santa wanted her to get this coveted mic (lucky us, right?) and he tried valiantly to deliver it on Christmas morning.

Okay, big guy. Let's just say that you get an "A" for effort on that one and pretty much a D- on actual performance -- though that last grade might be a little generous.

Santa did in fact deliver the gift. But he also tried to set it up, in which process the gift was ruined to the point where it no longer worked. It was, quite literally, a microphone with no microphoning capabilities. And I know, I know, it's not the gift but the thought that counts, but try telling that to a 9 year-old whose toy doesn't work. So Santa did what any reasonable fat guy with a liability problem would do in a bind:

He blamed it on Rudolph.

Turns out that clumsy reindeer had STEPPED ON my sister's gift. Never mind that it was delivered to an apartment with no chimney. Never mind that there was no snow in Houston and no good reason for a reindeer to slip. And really never mind that Santa should have left some time in his schedule to make a quick pitstop at K-Mart just in case. Nope, the reindeer did it, plain and simple. I know because I read it in the note Santa left by the eaten cookies. "Sorry about the Star Search Toy - Rudolph stepped on it. But I will tell your Daddy to buy you a new one. Merry Christmas." Um, thanks, Santa. Hey, at least you won't have to pay the elves any overtime for this one, right?

Exhibit C -- An American Christmas in Paris:

And finally, esteemed jurors, I could hardly allow you to make your decision without hearing the story of the famous Christmas in Paris, which sounds sweet and romantic (and was indeed a lot of fun), but might also top the charts for craziest Christmas ever.

The scene: Paris, an apartment on the Champs Elysee, temporary home to my parents, my grandmother, myself and a friend from Colorado, my sister, and about 35 of my sister's friends from both the US and her study abroad program in Spain. At one point I was more or less sure that I was actually living in a youth hostel done up to LOOK like a single-family apartment. But no worries, my friend and I went on the Paris Metro to purchase a small tree. It was "decorated" with whatever was handy and topped with a cheesy (um, make that CLASSY) souvineer tour eiffel. Fantastique.

Meanwhile, my dad became obsessed both with seeing every sight in Paris at the cost of our collective sanity (Note to self: do NOT allow dad to purchase "best of Paris" ever again, or similar book for another country. Ever.) and the idea of a traditional bouche de noel (literally Christmas Log, or Yulelog - a rounded, log-like cake with filling). Forget that most people under 30 in the house spent a significant amount of time in the pizzeria down the street and that we were all of legal drinking age in Europe, which made things...interesting. The Champs Elysee, meanwhile, had turned into a full-on carnival for the millenium celebration (my sister believed the Eiffel Tower would "lay an egg" at midnight. Seriously. She thought that.) and it was pretty much impossible to do a headcount at night without instituting strict roll call a la Little Orphan Annie or a military academy.

Luckily, Christmas proceeded (and most of the houseguests actually left right around Christmas Day, I believe), but the day after (also known as my parents' anniversary) brought a massive windstorm that uprooted trees, closed the Metro, and did serious damage to several French landmarks - including the windows of the Sainte-Chapelle. Major bummer. Our vacation is literally still a topic of conversation for many Parisians, although I'm pretty sure they're not referring to the damage we personally caused. Or at least, I hope not.

If so, I am TOTALLY blaming Rudolph.

Closing Argument

There is more evidence, of course, like the time the dog (the family dog - not Sampson) got a raincoat and hat for his "present" and caused the cat to freak out, the "Christmas bush" we once used to celebrate in San Francisco, and the fact that I for years insisted that a very tacky multicolored foil pine cone with fake snow be placed in a prominent position on our otherwise pretty tree. (Of course, now I'm old enough I have my own tree, and the lights are indeed multicolored. So there.) Most families I know watch "A Christmas Story" so that they can laugh at the ridiculous antics of Ralphie and his family. Not my family though -- we watch it because we relate. Quite honestly, it wouldn't surprise me one bit if I end up with a pink bunny suit one of these years. I have some very crafty aunts, after all.

And so, ladies and gentlemen of the jury, I rest my case. I know that if you consider all the evidence before you, you too will arrive at one simple, indisputable fact: Christmas with my family is, without question, a ridiculous, crazy, silly, wonderful, miraculous, beautiful day.

In short, we are guilty as charged. And I wouldn't have it any other way.


Merry Christmas, Happy Winter, and a Peaceful New Year to all our beautiful readers.

Piper and Sampson Bear Beatty

Friday, December 24, 2010

Merry Christmas to All

'Twas the night before Christmas, when all through the flat
Not a creature was stirring, not cockroach nor rat.
The stockings were hung on the windows, all there
For all of the family and dear Sammybear.

The streets were still busy, the stores all aglow
And in NYC there was still not much snow.
But better than snowflakes and better than cheer
Was the one special gift we were given this year.

'Cause when it turns midnight there will be no clatter
Of treatments and neb cups and all of that matter.
And those pills that I take are a small price to pay
For the knowledge that I will wake up Christmas day.

I'll spring from my bed with the greatest of ease,
I'll take a deep breath with no crackle or wheeze.
Then I'll run to my kitchen to grab some hot "joe"
And have one perfect Christmas, regardless of snow.

And E in her fashion and Sam with his toy
Will all settle in for some true Christmas joy.
While Mom and Dad truly deserve three big cheers
'Cause on Sunday morn they'll be hitched 40 years!

The lights will be lit and we'll say a quick prayer
In remembrance of loved ones, both passed on and here.
For those who are hurting, for those who are missed
And for all of us living, so joyful and blessed.

And we'll each give a moment to offer a smile
To the heroes out there who went the extra mile.
To those who save lives and to all who help fight:
Merry Christmas to you, and to all a good-night!

Wednesday, December 15, 2010

A Christmas (Party) Story, And Then Some

Okay, so picture the scene: A beautiful, charming, stylish, and incredibly witty young woman enters a Christmas party. Let's just say (purely for the sake of argument, of course) that she is pretty much exactly 6 months out of a double-lung transplant for cystic fibrosis. She is also, it goes without saying, very humble and modest. Obviously.

At some point during this little get together, an old friend approaches. He smiles at our heroine and strikes up conversation. And then, having gone through a few basic courtesies, he launches right into the million-dollar question. "So," he says, eyes twinkling, "what have you been up to for the past couple of years?"

Wow. Are you sure won't settle for a detailed explanation of the laws of physics? Because I'm guessing that would be simpler, and take less time.

Okay, fine. I guess the simple answer to that question is right there on the left sidebar of this blog. After all, this is where I've been chronically my journey for the past 2 years, so what better place to look for a neat and tidy little explanation of the transplant experience? And right about halfway down is the handy little "blog label cloud", which proves that the 3 biggest topics discussed here have been the following:

Transplant, IVs, and Life.

Yep, I think that about sums it up. Thanks, label cloud!

The last year and a half of my life -- starting in about May or June 2009 and continuing right up to the present -- have pretty much been dominated by the idea of transplant, and for good reason. Actually, if you want to get technical about it, transplant started taking over way back in January 2008, which is when I first started the referral process for my evaluation. Because I gotta be honest here: once someone suggests that you might be better off ripping out one (or two) of your organs and replacing them with parts taken from a dead guy, well, let's just say it gives you something to think about, to say the least. I think, though, that for me in particular the idea of transplant really became kind of front and center in mid 2009, if only because that's when I officially left my job, asked my mom to move into my apartment, and got officially listed for new lungs. In other words, that was the time when transplant moved from an abstract concept that hovered generally in my future to a more concrete medical step necessary to save my life from end-stage cystic fibrosis. Wow, what a ride.

And, coincidentally enough, June 2009 is also the time when the topic of IVs hit center stage for me. Don't get me wrong here -- I was on IVs more often than not throughout most of 2008 and definitely the first half of 2009 (not to mention at least once or twice a year, every year, starting at about 16 years old), so they were already a well-established part of my life before that pivotal month. But it was in June of 2009 that I began, while on a boat trip off the Turkish coast of all places, to experience the fevers and other symptoms that heralded the impending demise of my first implanted port-a-cath after 9 years in my upper left arm. And it was, in turn, the death of this first port (and the systemic infection that accompanied it) that marked the official start of over 1 year of continuous IV antibiotic use. Oh, sure, I've had two or three short breaks -- with a definite emphasis on the "short," since none so far have lasted more than a week or two, tops -- but the fact remains that they have been few and far between, to say the least. In fact, this morning my transplant doctor examined my port and commented that it was a bit red. My response? "Give the poor thing a break." It's been working non-stop for a year (which is when I got port #2 placed, by the way). It is very, very irritated, and you know what? I don't really blame it.

Of course it goes without saying that I am grateful. I am grateful for the advancements made in transplant and the donor who offered his organs to save my life. I am grateful for the option to have a double-lung transplant, as I know it is a privilege that some never get to experience. I am grateful for there are IV drugs that still work and for the new, infection-free port that feeds them to me.. I am grateful for the doctors, family, and friends who have seen me through all of this. All of which is NOT at all to say that I'm not a little irritated with the whole process at this point. Because, just for the record, I totally am.

On the other hand, every minor (or even major) irritation along the way seems to come with a payoff now, and I guess that's where the whole "Life" thing comes into play. Because the last year and half -- and in particular the last 6 months -- have been, in many ways, more filled with life than I ever dreamed possible. I have been absolutely elated at new possibilities and tragically sad as I mourned the loss of my old lungs. I have been terrified of death and exhilarated by the hope and faith that everything would turn out as it should. I have triumphed and I have failed. And, more than anything, I have loved and been loved a million times over. Which is, in my mind, kind of what makes life worth it anyway -- and it definitely reinforces the idea that "Life" has made a up a very pivotal part of my journey. I hope that continues to be the case far, far into the future.

All of which the young woman briefly considered explaining to her friend before finally giving a huge smile and opting for the far more succinct: "well, it's been one hell of a crazy miracle, but I'm extremely grateful to have been given the chance to come along for the ride."

And I couldn't have said it better myself.


Speaking of Transplant, IVs, and Life, I had my 6-month check up today at my transplant clinic. Overall, things are still going great with these beautiful new lungs. My FEV1 continues to hover at about the 78-80% range for FEV1, which is pretty darn impressive when you consider where I was just a few short months ago. I am having some very minor symptoms, which led to a nasal swab to check for viruses and a bronch -- likely scheduled for later this week. I'm at peace with the plan, in part because I still feel pretty fantastic and in part because i still really trust my doctor and care team. As tough as transplant can be sometimes, they seem wise, compassionate, and capable in their approach to dealing with any issues that arise. And as much as I hope that the bronch doesn't lead to more IVs (because come on, let's face it -- I.DESERVE.A.BREAK.ALREADY!), if that does, in fact happen, I know that I'll deal with it and move on. Because IVs, while admittedly super annoying, are really just another part of Transplant when you get right down to it. And that, my friends, is just a fact of Life.

Enjoy the season, beautiful people.

Tuesday, December 14, 2010

All I Want for Christmas (Is My Two New Lungs)

Every year the holidays roll around and hundreds of CF/post-transplant spouses and significant others are left struggling with what gift to buy their sensual, scarred sweetie. Tragically, many of these clueless Cassanovas will miss the mark entirely, presenting their beloved with a gift basket of grapefruit or a membership to the Raw Meat of the Month Club. But don't be one of them! Let us help you stuff her stocking and trim her tree with helpful and exciting drugs from all walks of post-transplant life. Trust us, she (and her lungs) will thank you.

Prograf: Sure, it's predictable, but the classics never go out of style. This pill is as important as the little black dress for the transplant patient who truly wants to strut that new organ in style. It also comes in a wide assortment of dosages (each with its own color!) for your convenience. Try .5 mgs if you're shy, or hit the ground running with the 5 mg stunner and show her how much you really care. Bonus features of this gift include frequent blood draws, a sexy tremor no one can resist, possible long-term neurological issues, and some sleepless nights thrown in for good measure. We bet you'll know how to fill the extra creative.

Cellcept: Kinda like prograf, but bigger and harder to swallow! This (not so) little pill is perfect for the transplant patient who enjoys trying out new viruses and crazy bacteria that remain relatively unknown to the general population. Thought the Bubonic Plague was extinct? We bet Cellcept can prove you wrong! Use of this drug practically ensures that you'll have at least a few days a year of quality bonding time in your local doctor's office and/or hospital. Also perfect for anyone who enjoys that special thrill of seeing their partner in a germ mask. Sexy.

Prednisone: Do you know someone who might truly enjoy injecting with insulin, eating two entire pizzas washed down with pickle-topped ice cream sundaes and three family-size bags of potato chips, then burning off the calories with a round of insomnia-fueled mania -- all while crying hysterically over that rerun of Saved By The Bell where Jessie got addicted to caffeine pills and was "so excited, so excited, so...scared"? Does that special patient in your life ever stand in front of the mirror dreaming of a rounder face and possibly some gorgeous facial hair to complete that "sexy cavewoman" look we all crave? Have a friend or family member who's recently been complaining that her mood is too darn stable and her weight too effing predictable? If you answered yes to any of these commonly asked questions, then you definitely need some prednisone for her stocking. Just make sure you hide your serving of the holiday dinner somewhere safe (and preferably padlocked) before she opens her gift.

Valcyte: If you crave side effects but immuno-suppressants just aren't your style, let our personal pharmacy shoppers hook you up with some fabulous Valcyte. CMV ain't got nothing on this little pink pill, we promise. And if you really want to show her you care, why not consider upgrading to the IV Ganciclovir version? We guarantee this little gift will have her Craving More Valcyte before the year is over!

Antibiotics/Antivirals/Antifungals: And just in case your special someone isn't a CMV mismatch, never fear: we've still got you covered! These drugs can treat everything from paraflu to pseudomonas to all the stomach problems that come as a direct result from treating paraflu and pseudomonas*! Still not sure this is the gift for you? Let us put your mind at ease: if your beloved is ever planning on going out in public again -- ever -- she needs these drugs. She probably needs them just to sit in the same room with you if YOU ever go out in public again, and she definitely needs them if she ever plans to eat anything. Seriously. Buy them. Now.

*Note: the author of this statement makes no representations as to the actual effectiveness of such treatment at actually easing the nausea, digestive issues, and other stomach problems that might arise from antibiotic use. She just knows from experience that too many antibiotics leads to stomach problems that lead to more antibiotics. Why this works (in theory, at least) is completely beyond her understanding of the human body. As an aside, she also admits that she did NOT do well in high school biology, which probably explains a lot.

Beta-Blockers: Need a gift for the transplant patient who has everything? Do you want to make sure your token of love goes straight to her heart -- literally? Then let us suggest beta-blockers. These drugs are 100% guaranteed to slow the heart and lower the blood pressure, likely while lulling your beloved into a nice, drowsy state that may or may not cancel out the insomnia and/or mania induced by other drugs on this list. And while a slow heart rate and lower blood pressure might not be exactly the response you're looking for in the heat of the moment, let us assure you that they are better than the alternative in this case.

All The Old CF Staples (Or Many of Them, Anyway): Hey, let's face it: sometimes it's just hard to let go. For the nostalgic among us, why not try a gift of some of your old favorites? Pancreatic enzymes? Yes, please! ADEKs/Source CF vitamins? Sign us up! Hey, even the occasional round of TOBI, Colistin, or Cayston can make an excellent stocking stuffer. Remember: we all like to be surprised once and a while, but some drugs are simply not going anywhere -- just like her CF pancreas!

Of course, if none of these suggestions tickle your fancy, be sure to check out our "Save on Healthcare Insurance Today" (SHIT) gift card program for .2% discounts off your loved one's next insurance premium, doctor's visit, or drug copay*. Sure, it ain't much, but with the current healthcare system, you should be glad we're offering anything at all. Gift certificates run $1,000,000 each and carry a maximum value of $5. Trust us, it makes sense.

*Discounts cannot be used to purchase any drug commonly taken by humans or to visit any licensed medical professional other than those who possess x-ray vision and are able to leap tall buildings in a single bound (some exclusions may apply within this category). Certificates are void on weekends, holidays, and any day ending in "Y". Gift cards purchased through the SHIT program are non-refundable and may result in higher payments in the long run. We apologize for any inconvenience these restrictions might cause and assure you that our staff is working on a timely and effective solution. In the meantime, if you have a problem with any of the above, please keep quiet and do nothing -- as anything else could seriously dampen our holiday spirit and bottom line. Thanks in advance from the Scrooge Healthcare System!

Happy shopping!

Sunday, December 12, 2010

A Prayer in Celebration of Time

And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
--T.S. Eliot (The Love Song of J. Alfred. Prufrock)

Time is kind of a funny thing, when you think about it.

5 months and 29 days ago I couldn't breathe. I could barely put one foot in front of the other without feeling as though the world was falling out from under me. I woke at night coughing, gasping -- startled out of slumber from dreams where I was drowning in a swirling ocean and unable to break the surface. I preferred to sleep on my couch over my bed, not so much because of physical comfort (there was, in my mind, no such thing as real physical comfort anyway), but because somehow I had the sense that in the living room it would be harder for me to slip away entirely. Proximity to people -- to anyone, really -- became my lifeline. Literally.

5 months and 29 days ago, by the way, my dog preferred to sleep elsewhere as well, mostly with my mom. My continuous coughing and weird gasping left him visibly uncomfortable, and his puppy brain compelled him to offer me gifts of his favorite squeaky toys or bones and then retreat, if possible.

5 months and 29 days ago, throwing up was an almost daily occurrence -- not that it ever got any less disgusting, mind you -- and eating was a serious chore on par with other nearly insurmountable tasks, such as climbing a short flight of stairs or walking to the end of the block.

But 6 months ago today, all of that changed.

Today marked exactly 6 months from the day I was wheeled into surgery around 1 in the morning with mucus-filled CF lungs and wheeled out about 5 hours later with wonderful, brand new (to me, at least), healthy lungs. It is 6 months to the day from the moment I awoke in the Cardio-Thoracic ICU, unable to speak because of a ventilator tube and unable to think straight because of a ridiculous amount of drugs, but desperate to communicate about everything from my thoughts regarding visiting hours to my desire to know my O2 saturation and heartrate. 6 months since I sat in my bed taking stock of each individual digit (my memory is of slowly moving one finger, then thinking to myself "okay, that's alive" and moving on to the next small appendage, which is somewhat of a testimony to one's emotional state right after such a major, life-transforming surgery). And it's been 6 months, to the day, since my support team near and far read this untitled post by my beautiful sister, and left the comments that would make me laugh, smile, and use 10 minutes worth of strength and concentration to try and formulate some form of reply to in the days to come.

It was 6 months ago that nearly a year of waiting on the transplant list and 28 1/2 years of treatments, airway clearance, and lung infections were brought to an end. (Well, that's almost true -- I remain susceptible to lung infections, though the scale is different, and I was sent home from the hospital on airway clearance, nebu lizers, and IVs. I have since dropped the airway clearance entirely, and hope the other two will follow suit in due time.) I have spent 6 months learning the names, dosages, timing, and side effects of my new rainbow regimen of anti-rejection, anti-infective, and other drugs. 6 months since my medical vocabularly expanded to include things like CMV-mismatch and bronchiolitis obliterans syndrome (BOS). And it's been 6 months since I began the lifelong learning process of how to deal with life when the lungs that keep you breathing are no longer the lungs that were made for your body.

How weird to think about on an intellectual level.
How crazy to even imagine.
How beautiful to experience.

And now, 6 months from that day, that hour, that instant when the whole world turned upside down and inside out and backward: I. Feel. Amazing.

  • I have walked miles along the beautiful streets of Manhattan.
  • I have visited friends and spent nights unencumbered by treatments or O2 concentrators.
  • I have celebrated 29 incredible years on this Earth.
  • I have purchased a new apartment and had dreams about a new life and all that comes with it.
  • I have attended my sister's fashion show.
  • I have had people tell me to slow down while walking because they can't keep up.
  • I have annoyed my dog by refusing to stop our walks when he wants to linger.
  • I have lifted my glass in toast to my godmother on her 60th birthday.
  • I have laughed and not coughed . . . honestly.
  • I have been blessed with a community of CF/transplant friends who share my doctors and with whom I can speak openly about any issues that arise.
  • I have chased and played fetch with my puppy, who is no longer afraid of my breathing
  • I have, and will continue to, give thanks for every moment -- even the not-so-wonderful ones.
I have also visited my doctor more times than I can count, had well over 10 bronchoscopies, been treated twice for mild rejection (once with oral steroids, once with IVs), endured several rounds of IV antibiotics, cultured a couple of new bugs along with some of the old critters, watched friends suffer from chronic rejection, given myself shots for blood clots and low WBC counts, received weekly blood draws to test the drug levels in my system, and suffered shakiness, migraines, high heartrate, insomnia, changes in my appearance, and nausea -- to name just a couple of the many, many side effects. None of which change the fact that, for really the first time in my entire life, I can take a deep breath and actually feel it reach down into my lungs.

I haven't made much of a to-do about this half-year anniversary, to be honest. I'm not sure if many of my friends or even my family members realize that today marked 6 months on this unbelievable roller coaster ride. And that's fine with me, because as far as I'm concerned I don't need to be anything except Piper in their eyes. I don't need to be someone 6 months out of a miracle when I could instead be someone 29 years into being a friend, a daughter, a sister, a lover, a cousin, a coworker, and, quite frankly, a force to be reckoned with (for better or for worse). And honestly I feel that perhaps the greatest gift that my beloved Donor Bob gave me with these lungs was the freedom to move through existence not just as a patient 29 years into CF or 6 months into transplant, but as a woman with part of her life behind her -- and a whole lot of living yet to come.

So thanks, Bob, for the breathing and the beauty. For the miracles and the mistakes. For the smiles and the sighs. For everything that you've helped make possible in these last 6 amazing, indescribable months. And for all the wonder we have yet to experience together. Because, God willing, there will be plenty of time.

For everything.


Friday, December 3, 2010

An Open Letter to Everyone I Love

Dear Beautiful People:

Hi again, everyone. This is Piper -- your friend, family member, (ex-)girlfriend, acquaintance, classmate, peer, colleague, student, teacher, or enemy -- writing just to check in and send a little message via this vast cyberspace universe we call the internet. The thing is, I really want to reach out to all of you. I guess because I am, in some ways, someone you might not have met before. And I want you all to know who I am and where I am now...even as I'm still discovering it myself.

First of all, I have to lead with what is quickly becoming my standard catch-phrase: thank you. Thank you for all the times you slowed down to walk with me or drove your cars right up to the doorways of restaurants so I wouldn't have to cross the parking lot. Thank you for pausing the conversation while I coughed, and thank you equally as much for resuming it quickly without any awkward silence when I was finally finished. Thanks for putting up with the treatment machines that took up too much space in our dorm room. Thanks for being in videos for the CFF and for pledging donations to my Great Strides walks. Thank you to everyone who came with me to the doctor just to keep me company, ever. I know that wasn't fun for you, no matter what you said at the time. Thank you for offering me a shoulder to cry on and for not always expecting me to cry. Thank you a million and one times over for never saying "are you sure you can do THAT?" unless it was really, really, really necessary. Thanks for listening. Thank you for telling me I was pretty when I looked way too thin, and thanks for understanding that sometimes eating that extra helping is not so much a privilege: it's just one more chore out of way too many. Thank you for being with me and teaching me so so much more than I could ever repeat here -- from basics like how to ride a bike to more advanced stuff like all the words to "Gangsta's Paradise" by Coolio. Thanks for not teasing me that I once listened to Coolio. Thanks for dragging me to all those concerts I didn't want to go to and for making me see that electronica just might be a valid form of music...maybe. Thank you for all the lessons you have yet to bestow, of which I am quite positive there are many.

In other words, just thanks to everyone. You have enriched my life beyond measure.

To those I have ever fought with, I also want you to know that I'm sorry. It's taken me 29 years (and counting) to realize that only really simple questions have easy answers. "Where's the milk?" comes to mind, or maybe "what's the approximate distance in light years from here to the sun?" -- boring stuff like that. Most things worth asking ("what's the best approach to balancing the budget" or "how the heck does my dog continue to gain weight when he's been on a diet for like a year and he's supposed to be a shih-tzu/yorkie mix, for crying out loud?!") are a little more complicated. So I am sorry -- not for voicing my opinion but for any time when I might have made it seem like yours wasn't worth hearing as well. That's not a fun way to have a conversation, and it's something I'm trying to work on, I promise.

Okay, so that's out of the way. Now on to the more exciting stuff.

This past year has sucked. I can freely acknowledge that fact now, much as it pains me to admit that an entire year of my life was, generally speaking, not a whole lot of fun. And that is painful. I feel a little bit cheated, honestly. I liked where I was and where I was going before this whole house of cards collapsed on top of me, and sometimes it's tough to look around at the rubble and say "huh, well at least it wasn't made of heavy rocks." Don't get me wrong, I do try to be positive, but I'm also willing to be realistic from time to time. And I would say that having one single solitary month with zero IV antibiotics in the past two years is a little sucky. It just wasn't very enjoyable, despite individual moments that were, of course, major exceptions (and most of those were due to you guys anyway, so you already know about them).

Right now, though, as I sit pounding these keys way too late at night despite the fact that I need to get up pretty early tomorrow, life decidedly does not suck. Not even close. In fact, I would venture to say that life right now is the opposite of sucky (which, fyi, is totally not to say that it blows). I just finished another round of IV antibiotics tonight and, yes, I do admit that there are still a lot of health-related issues going on in my life. I dare say there might always be a lot of health-related issues going on in my life, though, so honestly I'm not too torn up about the drama right now. But the thing I want to stress is that I feel so profoundly and totally different than I did last December 3rd. I feel, well, I guess one word for it might be "changed." Another might be "really f-ing lucky." You know, whichever one works for you.

There are, of course, the obvious differences. I can breathe -- that's a pretty big one. I do not, for the most part, do "treatments" anymore, aside from IVs and some nebs, neither of which are permanent fixtures in my routine by any means. I don't remember the last time I coughed so hard I threw up, but I know it was at least 6 months ago. I look somewhat different, too, as I have more color and am at least creeping my way toward a healthier weight. Oh, and I sound like an entirely new person. My "cough" now actually makes me laugh, that's how pathetic it sounds to me after that CF monster cough. So there are some very noticeable changes, and I like that -- it shows people how incredible transplant really is, and the importance of oxygen for everything from HR to hair growth.

There are also other, more subtle changes. People don't stare at me in public anymore, which you might not have noticed anyway but believe me -- I did! My dog really likes to cuddle up really close to me, whereas my breathing used to actually make him nervous, which kind of shows how amazing animals are when you think about it. I can stay up this late typing and know that I'll be okay tomorrow, even if I am a bit tired. That one is huge. Oh, and then there's the fact that I feel like I'm a little bit stronger.

Yeah, I said it. Sorry.

Let me be clear: I do not in any way, shape, or form believe that one has to have a lung transplant to be a strong person. Nor do I believe that everyone who has had a lung transplant is somehow miraculously stronger than those who have never had to have a transplant, or had any health problems at all. Frankly, I've always joked that what doesn't kill you, um, doesn't kill you. Anything else is just a bonus. From my experience, people generally rise to the occasion because they have to, not because they're just that amazing. And I, for sure, am a perfect example of this general rule. Which is why I'm so excited about this change and why I feel the need to tell you about it here.

In case you were wondering, here's what I mean by stronger:

-I care a lot more about people other than myself, and I work harder to put myself in their shoes. People have shown me so much love, light, and strength this past year (and before) that if I really stopped to tally the score I'd probably have a nervous breakdown. So I don't do that, but I do try as hard as I can to remember that a little kindness goes a long, long way. I've seen what positivity can do in this world, and I'd rather be a part of that than working against it. I want to be someone people want to be around, and I definitely want to enjoy being around myself. It's an ongoing process, to be sure, but I think I'm making progress.

-I'm happier with who I am, period. No, not because I'm healthier (I am, but I'm still sorting through a lot of issues, so it's not quite like I'm "healthy" all the time). Not because I'm doing more productive things with my time (I am decidedly NOT doing more productive things with my time, much as I enjoy the things I am doing). I think it's because I just figure I fought hard enough to save myself, and others fought right there along with me, so I must be worth saving. I must be worth loving, because people do love me. Okay, that's fine. It doesn't make me amazing, it just makes me human, and that makes me good enough. I'll keep working on my flaws and I'll just try to laugh at it all as I go.

-I know what I can survive, and it's a lot. Frankly, I am one tough chick, no joke. And this is, to be honest, a little surprising to me. I always knew I was assertive to a point, but I rarely considered myself actually all that strong. Strong beliefs, strong opinions, strong body, strong intellect...okay, maybe at various points in my life. But strong as a person? Eh, I had my doubts sometimes. The difference is that now I know, with total certainty, that it is going to take a monsoon of epic (you hear me, Tom? EPIC) proportions to knock my boat out of the water. I'm sure things will still hurt me (and, quite frankly, I think that's good, as I would never want to get so hard that I couldn't get my feelings hurt), but I have all the faith in the world that I will keep sailing. And that, eventually, the seas will calm and I will be happy and whole again -- and maybe even stronger, to boot.

I owe some of these changes to God. I owe some to circumstances, however you believe those come about in our lives. I owe some of them to myself and to the resilient spirit that I now know I posses. And I owe a ton of these -- most, I would say -- to you guys. To the people who have influenced my life and guided my rudder every bit of the way, even if the lessons you taught weren't always what I wanted to learn.

All of which is just to say this: the me that I was, the me that I am now, and the me that I will always be adores you. All of you -- past, present, and future. And some things, at least, will never change.

With love, light, and endless gratitude,