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!

Wednesday, December 23, 2009

And When It's Over, It's Over

Friends, family, beloved readers, today we gather to say a collective goodbye to the disaster we have all come to know as the "Great Port Debacle of 2009." True, it made for some amusing blog posts, but all in all I doubt that any of us will be too sad to see this one go -- I know that I for one am not shedding any tears. Thankfully, like all things good and bad, it is over when it's over. And this one is officially, 100%, fat-lady-has-sung-and-is-now-recovering-backstage style over. Feel free to applaud.

And, as often happens when one journey ends, another has just begun. A very exciting new journey, in this case. This very morning at approximately 8:30 am, I welcomed a new arrival into my life. Or, more specifically, I guess I should say I welcomed a new arrival into my chest. Ladies and gentlemen, I'm proud to introduce to you . . .

. . . my new chest port.

Seriously, isn't it lovely? It sits so high on my chest for a couple of reasons: 1) because it is threaded into my jugular vein in my neck, and 2) so that the transplant team won't have to remove it during surgery. It also sits off to the side somewhat, so that in actuality the port sits about three inches above my right breast and about an inch and half maybe from where arm meets my chest. This means that even accessed you can't see it wearing regular clothes, even a v-neck (obviously tank tops would be the exception to that rule). Right now it's accessed so I can finish up these IVs, but they also sorta loaded it up on gauze and whatnot, so normally when accessed it won't look quite so big. I'll be sure to post a pic once I remove the dressing and everything as well.

I cannot even begin to explain how happy I am to have a port again! Even right up until last night I was having some second (and third, fourth, fifth, and sixth) thoughts. I just really didn't want any more complications or chances for infection, and I wasn't entirely thrilled at the prospect of facing the OR again. (Sidenote: ports are often inserted by interventional radiology, just like a PICC -- which is how my original port was inserted 10 years ago. This time, due to all the complications with the removal of my last port, the fact that it took over 3 hours to place my last PICC, and the clot complications that they believe were caused by trauma due to difficulty with placement, everyone thought it would be safer to just have a vascular surgeon perform the procedure in the OR. Thank you, Columbia Presbyterian vascular surgery team for being so wise, helpful, and downright amazing!) But despite my misgivings, I can honestly say that waking up at 5 am to travel the 168+ blocks to my hospital was the hardest part of this whole ordeal. And as I sit here now, enjoying the flow of antibiotics into my system with absolutely no peripheral line in site and both hands free to type without pain, I am already SO grateful to my doctors for pushing me to try again on the port front. What a huge relief!

I am going to have to go on blood thinners again just to make sure there are no clot issues in the first couple of weeks. Small price to pay for sure. And as for the pain, so far there's not much. The lidocaine is just now wearing off though, so I've gone ahead and filled my vicodin prescription just in case I need it once the numbness fades. So who knows, it may be a very "merry" Christmas for me!

And finally, since I know you're all waiting on the trademark Piper ridiculousness that so inevitably accompanies any medical procedure, no matter how big or small, here you go:

Anesthesiologist: Okay, so you're getting a port?
Piper (still fully lucid): Yes.
A: So you'll need us to start an IV now for use during the procedure?
P: Oh no, I have this one that the homecare nurse put in for me.
A: We don't love to use lines not inserted by the hospital.
P: Please please please? I promise it's good!
A: Are you sure?
P: Yes, definitely. This one is good, I used it at midnight last night and it was fine. In fact, it's been working so well maybe we shouldn't even put in the port. (laughs)
A: (Also laughs) Okay. I'll just hook this up and cancel the procedure.
*A hooks up IV drip to peripheral IV*
Nurse: Um, doctor, I don't think that IV is dripping. Are you sure the line is good?
A: (cracking up) So maybe you'd like that port now, young lady?

Yeah, that's right, I blew a peripheral while in the OR to have a port placed, but obviously not before insisting up and down that it was a great line. Sigh. Oh well.

At least it's over.

Monday, December 21, 2009

Facebook Faux Pas

Why, hello there soapbox, how are you today? Me? Oh, I'm fine, still getting by, doing IVs, all that fun stuff. What's that? You want me to step up on you? Well, really, I couldn't. I mean, sure, this is a personal blog and sometimes I do tend to go off on things, but I just don't think anyone really wants to hear me rant about . . . what? You say you'll be super sad all Christmas if I don't stand up on you right now and get this off my chest? Well, geez, soapbox, you and I have been friends forever and I would hate to see you upset. I guess I could get on for just a small second. You know, if it'll make you feel better and all. Just remember, I'm only doing this out of the goodness of my heart . . .

Dear Facebook Friends:

First of all, just let me start this off by saying thanks. Thanks for looking me up, for finding me even though some of you I haven't seen since I was in grade school, for "friending" me or accepting my request, for caring about how I've been doing, for wanting to connect, and for allowing me to share in your life, your favorite bands, your drunken party pics, and, of course, your status updates. I really appreciate it, often more than I can say. Let's face it, in the past Facebook was something random I logged into every couple of weeks or so, but lately it's seen me through more than one lazy hospital afternoon -- allowing me a much-needed sense of contact with the outside world -- and for that I'm totally grateful. Really.

But, well, I didn't climb up onto this thing just to thank you all. I actually have something to say and I think it's important. So please, if you could all just stop typing for one second, I'd like to try and get a quick point across.

Life, as a general rule, does NOT suck.

Okay, so take a second. Let that sink in a little before you go back and write your next status update. Because honestly it's true: life does not suck. It doesn't. I don't normally love across the board general statements, but I'm willing to make one here because, in case I haven't mentioned it yet, life does NOT suck. And I'm sorry to have to be the bearer of good news, but your lives, in particular, do not suck either. This is true, in fact, despite what you wrote in your status this morning.

Wait, wait, please don't jump on me on all at once and tell me how much I'm misunderstanding what you wrote. Because trust me, I know that you were just being melodramatic when you wrote "fuck my life" because the coffee maker at your office was broken this morning. And I know that you don't actually "want to go to sleep and never wake up" because you have a headcold. I even totally understand that when you wrote "This sucks. 2009 sucks. It all just fucking sucks." you didn't really mean that everything sucks, just that you feel hurt and angry and upset right now. I get that, really, honestly, I do.

But please don't ask me why I get so sensitive about these "little jokes" unless you want to hear my real answer. Because if I'm honest I'd have to admit that it deeply offends me when people, even friends who I know are joking, take life or granted. It offends me because I know too many people fighting to survive, and because I see people who have way bigger problems than the coffee maker who would never dream of writing "fuck my life." It offends me because I know people who have chosen to move on -- I've seen the kind of illness that drives people to make that call for themselves -- and it's never about a headcold. And it offends me because I know people whose 2009s were harder than you could ever imagine, and yet they never seem to be the ones complaining the loudest.

So let's see if we can't reach some middle ground here and agree on a few basic points:

1) Coffee in the morning is helpful, sometimes even necessary. And broken coffee makers are a pain.

2) Headcolds hurt. They do. I personally hate them.

3) Even perfectly healthy people have bad days/weeks/months/years sometimes. And they have every bit as much of a right to vent or complain about them, especially to friends, as anyone else. Illness doesn't make you noble, and being healthy certainly doesn't make you shallow.

and 4) Life does not suck.

There, was that so hard?

I guess all I'm asking for is a little bit of thought before you type out the most negative status message you can possibly muster. And if that's asking a little too much, well, I guess I understand that too, because who am I to stand between you and that tempting little "what's on your mind?" box? But just know that you're a whole lot likely to get sympathy from me if you keep it in perspective, and I promise I'll try my hardest to do the same.

xoxo beautiful people,

Piper and the Soapbox

Friday, December 18, 2009

New Day

Well, it finally happened. I mean, not that I wasn't expecting it or anything, but that still doesn't make it any less of a relief. See, it turns out that when I woke up this morning (at the absurdly reasonable hour of 11 am, mind you), it was -- shocker -- a new day.

Gone were the fevers, chills, vomiting, dehydration, and (most of) the soreness that have been the bane of my existence since Monday, that caused a massive overhaul in my IV routine several days into the course, that necessitated the addition of an oral antibiotic and an extension of an inhaled one on top of the IVs, and that proved conclusively the need for a second port. And with the loss of these things came the rebirth of my energy levels, my appetite, my desire for coffee in the morning (yes, even at 11 am I need something before I tackle "morning" treatments), and, of course, my oh-so-legendary brand of ridiculous sarcasm sense of humor.


Also with this new day comes the reunion of my entire immediate family in NYC (my father flies in tonight on the redeye!), a chance to actually complete some of the tasks on my pre-Christmas to-do list (you know, little things like, oh, say, buying presents for EVERYONE, which should be no problem just so long as I can complete it all between now and Wednesday, when I'm scheduled to have the aforementioned second port placed), and news that New York will most likely be enjoying a white Christmas this year. Actually, even a full on blizzardly "grab your skis and go gliding down 5th Avenue" style Christmas seems probable at this point. Because while this new day was just a really, really cold one, word on the street (and on my iphone's nifty little weather application) is that the next couple of new days are likely to bring with them a whole lot of wet, white, fun, beautiful, glittery snow.*

*All readers should be advised that the author's primary understanding of snow comes from a childhood spent in the mountains of Colorado. The above description of snow may not be accurate when describing New York City snow, which faces the unique challenge of remaining white in an intensely urban environment. A more apt description of said snow might include the words "dirty," "slush," or even "grey," but hey, it tries its best.

Okay, so the weather forecast says snow, and it's the holidays, and people will be traveling, the roads will be wet, and, unfortunately (tragically, even), there will most likely be loss. Which, of course, is true every year around this time, I guess. But this year that fact hits home for me in a very different and meaningful way, and awkward as it might be I thought I would be remiss not to at least try and get this out there somehow. Because I think it's something that a lot of pre-tx people -- or families, friends, or loved ones of pre-tx people -- struggle with at one time or another.

I am, first and foremost, a daughter/sister/cousin/niece/granddaughter/friend/girlfriend/human being. And, because I am these things, I have loved ones who are traveling this holiday season, some near and some far, and this year more than ever I am acutely aware of my desire for them to arrive safely. I say "more than ever" because, unfortunately, I am also more than ever aware of the loss.

This is true on multiple levels, the first being that quite simply I am deeply in touch right now with the fact that life is precious. I spend a lot of time in the hospital. I'm on the transplant list. I have a lot of adult friends with cystic fibrosis. I used to have more adult friends with cystic fibrosis, painful as that is to say. And oh yeah, did I mention I'm on the transplant list? Let's face it, at some point it becomes impossible to deny how clearly life is meant to be cherished, and also how fragile it can sometimes be.

The second level is a little more complicated. Waiting for a transplant from a deceased donor is a total roller coaster of emotions and strange desires. This Thanksgiving, as we said grace around the table, my father asked my grandmother to include a request for new lungs. After a brief pause she cleverly added, "And God, if you would see fit to have some new lungs appear somehow, we would be forever grateful."

It's a good prayer, isn't it?

I received a beautifully written email from a family member the other day that mentioned her own struggles with praying/hoping for new lungs, knowing of course how those lungs would have to come. It seems like this is a widespread concern within my family, and it makes sense, because no one ever wants to think of another family suffering a tragic loss when they themselves are hoping to avoid the exact same situation. Transplant provides the unique opportunity for the loss of one life to extend potentially several others, and yet that one loss is still, in every sense, just as heartbreaking. And transplant patients/families feel this tug-of-war between our need for organs and the tragedy that accompanies such a gift at a time when we ourselves are most aware of the basic human urge to survive -- and of the grief of those who are sometimes left behind.

So how do we go about reconciling all of this? Well, the short answer is that I don't know. Not now, and probably not ever. I haven't found a perfect solution, and as a consequence I'm still struggling with the news of this impending snowstorm and the much more immediate blizzard of emotions that it has already stirred up in me. But the best I've been able to come up with so far is to pray that all the many friends/loved ones/human beings out there traveling this year reach their destinations safely, but that whenever loss is unavoidable, that perhaps some lives may be saved through that absolute most generous of gifts.

And that we may all wake up to find that tomorrow is, yet again, another (beautiful, wonderful, and miraculous) new day.

Thursday, December 17, 2009

Breathing Underwater

Anyone who knows me knows that I have a couple of weaknesses. (Well, okay, so maybe more than a "couple," but really, who's counting?) The first, if I'm being completely honest, is probably candy, but the second, and far more important one for the purposes of this post, is most definitely anything bright, shiny, and colorful. In college I had a friend who used to joke about my "inner raccoon" because of my tendency to be mesmerized by things that glitter, sparkle, or glow in any way. More than one trip to Vegas has included a story about me wandering off from my friends, only to be found staring at the slot machines (not playing, mind you -- staring). I sometimes think I chose to move to New York City not so much because I wanted to go to law school here, but because it has some absolutely amazing views of lights at night. And, of course, more recently I flat-out insisted that the Christmas tree in my apartment (where my whole fabulous family is gathering for the holiday, because they love me that much!) have multi-colored lights instead of plain white. It's not that I don't love elegant -- it's just that I prefer my tree to look like a rainbow that just happened to land in my corner, if possible.

My third weakness, believe it or not, is fish.

Yes, I have a thing about fish. I have no idea when it started, or how I got so hooked on those little swimmy creatures, but I have to admit that I am, in fact, an addict. I love watching them, love going to aquariums, and tend to get super over-excited whenever I spot them out in open water. And yes, I am completely aware that this is an odd little quirk of mine (particularly given the fact that I a) have been bit by a dolphin, and b) once had a seagull poop in my hair while visiting SeaWorld, either one of which you'd think would have turned me off to aquatic animals altogether), but frankly I just can't help myself. I mean sure, they're slimy and they smell bad, but they're also graceful and beautiful and, well, colorful.

So I guess given these combined obsessions, it's no wonder why I pushed so hard for my family to spend New Year's 2007 at the Great Barrier Reef in Australia. It's still a bit of a mystery to me where I picked up the original idea, but I do know for certain that my main plan for the trip involved me, a snorkel, warm summer waters (Southern Hemisphere), and a whole lot of gorgeous, wildly colorful sea life. Think all the spectacle and glitz of Vegas lights multiplied by 100, but without the cheesyness and theme-based restaurants, and you'll probably have a pretty good idea of what I had in mind.

What I did not have in mind, however, was CF.

I'm not going to go into the events that led me to get as sick as I did before that trip, but suffice it to say that I should never have gone. I was flailing, literally, and everyone around me could see it a whole lot better than I could at the time. All I knew was that this was my trip, my idea, my family vacation, and I was not going to miss out on it for any reason -- even a really, really good one. So I went, despite everyone's pleas and warnings and despite my own best interest, and trekked around Sydney despite mind-blowing pain, and I ate kangaroo despite having no appetite whatsoever, and I snorkeled, of course, despite not being able to breathe.

Well, sort of.

It would be more accurate to say that I floated, supported by multiple "noodles" because I was too tired to really swim and because I knew that at any moment I might have to yank my head out of the water and take out my mouthpiece to get a good breath. And in between these panicked gulps for air, I peered down at the magical world floating just below me and tried to make out the colors through the tears accumulating in my facemask. I made my sister stay right next to me the entire time, smart enough at least to know that if you're going to snorkel in the ocean while sick, it's best to use the buddy system. And I tried as best I could to recapture some of the excitement and wonder of previous snorkeling expeditions, knowing that I had risked too much not to at least savor the moment. Unfortunately, I guess I had to learn the hard way that it's hard to savor anything when you're feeling strangled.

Trust me when I say it's not a coincidence that no pictures from that family vacation grace the walls or bookshelves or nightstands of any of my family's homes. Honestly, it's painful even to write about, because it makes me feel silly and selfish and ashamed all over again. And yet, at the same time, I'm actually thankful in a weird way for the whole experience. I had definitely pushed myself too hard, let illness go too long, not been in proper control of my CF to the best of my ability, before "Australia-Gate 2007," but never before had I been so forced to face the consequences. For better or for worse, I can honestly say that I have never since put off contacting my doctor or those dreaded IVs, and remarkably I've found that most of the time this works to my advantage. True, I have to face the fact that something planned long in advance might have to be canceled last minute due to CF -- and that royally sucks sometimes, no doubt about it -- but at least I'm not likely to find myself half a world away from my doctor and drowning. It's an experience I'd prefer not to relive, I guess.

Or at least not relive entirely, because there are definitely aspects of that trip that still make me swoon. Namely, my family, the color, the beauty, and, yes, the fish. So the other day when I sat down to make a list of the many things I plan to do with my new lungs, is it any wonder that "snorkel somewhere beautiful" came in pretty close to the top of the list? And as I sat there writing that goal out on paper for the very first time since January of 2007, I was struck by one simple, yet amazing, fact: achieving it is entirely possible for me. Even likely. And this time I promise you that I will savor every second.

Because breathing is a miracle. Especially underwater.

Sunday, December 13, 2009

Great Expectations

It's kind of a rainy, dreary day in New York City -- the kind of day made for curling up on the couch with a warm puppy, maybe a mug of hot tea, some nice music in the background, and a good book about love or adventure or a land far, far away.

Or, you know, about illness and double-lung transplant. Yeah, that works too.

As you might have guessed, this morning found me enjoying the rain by delving into some of Tiffany Christensen's Sick Girl Speaks, a patient-guide for navigating illness and transplant written by a fellow cystic and two-time transplant survivor. For those of you who know the book, it's not really a narrative memoir so much as a series of short vignettes/anecdotes dealing with various aspects of illness, transplant, and recovery (both physical and emotional). I have to admit that I haven't read the book straight through cover to cover yet, but I find it really helpful to read certain passages, especially those sections dealing with her transplant, for obvious reasons. And this morning my eye was caught by a particular message involving expectation -- basically the author suggests that recovery is likely to be smoother if the patient's expectations are in line with the reality of his/her situation. If you're unprepared for the pain you experience post-surgery, for example, you may be more fearful that what you're feeling is not normal, or that your recovery is not going as well as it should be. And for some reason, this rainy morning, that observation really struck a chord with me.

Lately I feel somewhat like a sponge about to tackle a particularly greasy and nasty casserole dish (bear with me here because I promise this simile has a point). I'm about to face something that I know will be incredibly challenging, and my little sponge brain has decided that the best plan of attack is to soak up as much water and soap (in the form of information and experience shared by others) as possible. The hope being, of course, that once I actually take the plunge, this information and experience will somehow help me better prepared, will help align my expectations with reality in a way that makes my recovery easier and less scary.

And for me, that's really the scariest part: recovery. For some reason I think I'm okay with the surgery part -- after all, my main job there is just to sleep and let my amazing surgeons do their work. It's the waking up that both terrifies and excites me. I have so many questions that seem impossible for my doctors to really answer. How will I feel when I first wake up? Having never had a chest tube or a breathing tube (while awake), what sort of sensations should I expect? How long will it be before I feel more alert again? Should I expect to feel much worse before I start feeling better? What are the emotions that most people go through in the days/weeks/months following such a major surgery?

This is probably somewhat complicated by my unique situation of being a CFer with slightly higher lung function who is nonetheless very high on the list. My transplant has much more to do with my infections, which are super frequent and scarier by the month, it seems, than it does with how I feel on a good day. On a good day, I don't need O2. On a good day, I can still run around and feel relatively active. In short, on a good day, I can breathe. So what will transplant feel like for someone whose old lungs wouldn't be so bad if they could only stay healthy? In other words, what will transplant feel like for me, which I know is both the million dollar question and the one that no one can really answer. Because no matter how much water I soak up, I know in the end that this is going to be my personal journey, and that perhaps the most difficult expectation to manage of all is the one that looks for hard, concrete facts instead of allowing for individual variation.

Still, you can't blame a girl for trying, right? So consider this my plea to all my wonderful post-tx cysters and fibros (and anyone else out there, including non-CFers) for whatever information you're willing to share about your immediate post-surgery experience. Or to put it another way, what is the ONE THING that you experienced post-tx that you wish someone had prepared you for ahead of time? And to make it interesting, if anyone out there pre-tx (or just thinking about it for down the road) has some additional questions or is thirsty for some "water" of their own, please feel free to share here and maybe we can all get some answers.

As for me, the one thing I never dreamed of for my transplant experience was that I would be in touch with so many wonderful people who could help me and share as much guidance, encouragement, wisdom, and strength as all of you have. And this is one instance in which defied expectations is definitely a great thing.

Thursday, December 10, 2009

My Day: A CF Picturebook

Chapter 1: Lazy Morning
(Yes, he sleeps on his back. No, I'm not kidding.)

Chapter 2: IV Afternoon
(Alternative titles for this blog definitely included "Track Marks: Confessions of an IV Junkie." And in case you're counting, this makes 8 times this year.)

Chapter 3: Gyrotonics Evening
(Bad picture, good exercise. You can't really see here, but I had 40 lbs of weight going for each leg. Which we followed by full body squats, lunges, and some other major thigh and quad workouts. I had a lot of extra energy and a lot of motivation - you'll see why in a minute.)

Chapter 4: Bright-Light Night*
(For my transplant friends: yes, this is a FAKE tree. Beautiful, yes. Real, no.)

*Okay, this isn't quite a footnote, but still: thanks go to Victor for the grammar lesson.

Oh yeah, and in between all of that I kinda, sorta, maybe had a dry run for lungs. You know, the usual.

Stay well, my wonderful friends.

Monday, December 7, 2009

True Confessions: Cystic Style

Okay, I have a confession to make. A big one, really, because for me to confess this means that I have to admit that I'm not always a really positive thinker, that sometimes things just come together and kind of overwhelm me. But I think I can admit that much to you guys, at least, since you've read about so many of my highs and lows of this rollercoaster we call "life with CF," and at least some of you have probably even experienced a few of those peaks and valleys for yourself. So I think I can trust you all with my dirty little secret, even if it means taking a deep breath and just admitting it.

I cried this morning.

I cried, and it wasn't so much for the people we've lost recently (although they have been on my mind, of course) or for the addition of another new CF machine into my household (although that kind of blows too, no pun intended), or even for the fact that I'm frustrated with waiting and with these constant infections. It really wasn't about any of those things, even though any one of them would have been a good enough reason to shed some tears. But it wasn't about that; it was just that I'm really, really, really scared right now. Scared about transplant and about the unknowns that come with it, scared about big things like the recovery and infection, scared about little things like leaving my puppy when I go to the hospital, and really just. plain. scared. About everything, I guess.

And so I cried.

I didn't cry much really (although maybe I should have - a long and hard emotional release might be exactly what I need right now). It was really just a couple drops of water, appearing like dewdrops out of thin air, then disappearing just as quickly as they touched the warm sunlight of my cheeks. Just a few short breaths to regain some of my composure, a few quick moments of sadness and fear followed by a comforting snuggle with an ever-willing Shorkie. A moment of darkness and then a return to some semblance of light, of trust, of peace.

I do trust that lungs will come for me at the right the time. I trust that this transplant is part of a larger plan laid out by a power far wiser than I am. I trust that I will recover and I've made lists of all the amazing things I plan to do after my transplant. I plan to live, and I plan to cherish every second and every breath.

That doesn't mean that I don't cry, though.

I guess nothing in life is ever certain, and some things we just can't really ever fully prepare ourselves for. I know so many beautiful, strong people (CF and non-CF) who have faced transplants and other obstacles with heads held high, backs to the wind, and collars turned up against the cold. They've faced these challenges and they've made their own roads, and I admire each and every one of them for their courage and their grace in the face of such frankly scary moments.

And yet maybe every single one of these wonderful people was, in fact, hiding in their hearts the secret of their last mini-cry. Of that one moment when things became a little too much for them, and their smile broke for just an instant, their strength wavered ever so slightly, and a few renegade tears escaped to run down their very beautiful, and very human, faces. Maybe.

As for me, all I know is that I cried. And that right now, in the aftermath of my tears, I'm still feeling kind of deflated and just a little numb. Maybe that means it's not the best time to be blogging, or maybe that makes it perfect. And maybe I'll cry again later, when this hits me again in some way. Or maybe I won't.

I guess it'll just be my little secret.

Sunday, December 6, 2009

Love (And Other Serious Side Effects)

In 28 years of dealing with CF, I think I've finally gotten pretty used to the concept of prescription drugs and the interactions they often have with my body. In fact, I would say I'm about one prescription refill away from deserving an honorary advanced degree in pharmacology. My medicine cabinet quite literally runneth over, and I'm not expecting that to change anytime soon. Certainly not with transplant, that's for sure.

Yep, I've dealt with the prednisone munchies and albuterol jitters. I've had sun poisoning because of cipro, vomiting after ceftaz, and fevers when faced with zosyn. I was lucky enough to have my tinnitus resolve after just a few weeks off tobra altogether and my kidney function eventually bounced back after the polymyxin, as did my iron and magnesium levels. I don't have a rash or bruising from the blood thinners anymore, and I'm pretty sure that whole oral thrush incident brought on by general antibiotic use is now a thing of the past. Oh, and that whole raspy (whoops, I mean "sexy") CF voice thing from all the inhaled meds? Yep, got that one too.

I'm kind of a side effect junkie, when you think about it.

When I first started dealing with all my prescriptions and refills as an adult I was always super into reading those little print outs that they put in the bag to tell you about all your drugs. Okay, so maybe not for the obvious meds I had been on forever like Pancrease (which, by the way, lists stomach pain as its most common side effect, making it clearly one of the more ironic meds out there) or even Pulmozyme, but definitely with the "newer" drugs like Prednisone and certain antibiotics. I knew which meds were best taken with food, which meds were likely to cause headaches or blood sugar spikes, and which meds meant I had to stay out of the sun at ALL costs.

Not that any of it really mattered, of course, since I had to take the drugs anyway. That's another great part of having CF -- you can educate yourself all you want on potential side effects, but unless something is causing hemo, bronchospasm, or serious allergic reactions, you're not likely to get the go ahead to cross it off your routine. And this makes sense, because really at the end of the day being able to clear the lung goo is more important than the sound of your voice, reducing inflammation trumps the desire to get to sleep at a reasonable hour, and fighting pseudomonas matters a whole lot more than that perfect summer tan. It's not rocket science or self-torture; it's just that the benefits outweigh the costs.

Recently the CF community has lost a lot of wonderful people, all of whom will be missed dearly. It seems like the past couple of weeks have been particularly tough, and to be frank about it all, it sucks. To find a group of people to connect and share information with about CF is such a gift. To then lose members of that family, their spaces left open like missing pieces of a beautiful jigsaw puzzle, is a heart-wrenching experience, to put it mildly. The passing of a friend, or of multiple friends as is (sadly) the case in this instance, from the same disease you're fighting can send you reeling. The side effects of a million strong drugs put together could hardly come close to matching the feeling of having to say, once again, "breathe easy, my friend."

And yet, none of us seems willing to call it quits. There are plenty of opportunities to do so, to shut down our blogs or erase the forums from our browser's memory, to just sign off with a simple "okay, enough, I'm done. I don't need to know anyone else with CF and I don't need to suffer another loss. Thanks for the laughs and the memories guys, but I'm out." And I can only guess that the reason we don't just throw up our hands is that the friendship, the support, and the strong sense of mutual understanding between CFers is a benefit that quite simply outweighs all the potential for loss, pain, and even fear when someone moves on in his or her journey away from this world. In other words, we stay for one very simple reason:

It's worth it.

Cystics don't come with a warning label or an expiration date. There's no handy little print out given to you when you meet a fellow cyster or fibro that spells it all out in clear and simple English.

PLEASE USE WITH CAUTION as contains mutated genes and may cause deeper understanding of oneself and one's condition, a tendency to share common concerns or medical issues, empathy, and laughing that lead to coughing fits. Other side effects might include friendship, community, and even love.

A serious side effect indeed, but I for one am definitely not giving up my prescription.

Wednesday, December 2, 2009

You Can't Hurry Lungs

Nope, you'll just have to wait. And wait. And wait.

Now before I get blasted for being way overdramatic (another special talent of mine, I totally admit), I do want to say that I KNOW I haven't been waiting all that long by transplant standards. A couple of months is nothing compared to one to two year waits so many people experience. I totally get that and I'd like to say that I know my situation is so much better and that I'm top of the list and that I'm lucky enough to still be able to exercise and live life and not just be confined to a hospital bed without my puppy or my home or my couch or good food and I'm not hooked up to a vent or even bipap and sometimes I can go hours or half the day without sticking a cannula up my nose and yesterday I walked my dog and today I'm doing some aerobics/strength training and tomorrow I have gyrotonics and maybe somewhere in there I'll fit in my friend's bday party tonight and be social and put on a smile to look like the generally happy woman that I am and dress up to look like the healthy woman that I am not. I'd like to say all of this and be able to add that I know I'm damn lucky and I'm not complaining.

Except that I am. Complaining, that is.

The past couple of days have brought a new diagnosis for me: pulmonary osteoarthropy. Not such a big deal, I guess, except that it causes severe joint inflammation and pain.


Pain is something I've always felt like I could just kind of shrug off. In 28 years I've never once called my doctor because of pain alone, never considered it to be a big problem in the grander scheme of things. I'm "sick" often enough as it is -- if I started calling the clinic every time something hurt, I think my "healthy" days would be cut in half, and I don't want that. I don't want to feel like that. And then this wonderful femme de la vie cystique made an offhanded comment that just kinda sorta maybe changed my entire life. "I used to just grin and bear it through pain, but now I find that I just don't have the energy to live like that." No energy to devote to pretending that pain doesn't exist. No energy to waste on sucking it up when there's so much that can be done about something as simple as pain. At 28 I have mastered the art of genuinely having fun despite pain, but I haven't ever really learned how to help myself live without it. Yeah, I know, just call me a late bloomer.

So I called my doctor, got my diagnosis, and am now back on a high prednisone taper. And you know what? It's working. I no longer cringe to stand up, or hobble around like and 80 year old, or skip my nightly writing/drawing sessions because my wrists and elbows are way too inflammed to help me express myself -- so that my brain remains inflammed as well -- and yesterday I even got down on the floor to play with my puppy for a little while without wincing. Oh yeah, and coughing/CPT/exercise (that holy trinity of CF maintenance)? So. Much. Easier.

Life is all about the little victories right now.

Anyway, I guess I'm complaining. I mean, if I ever were to complain now would probably be a pretty decent time to do it, since I had to repeat an arterial blood gas test yesterday b/c of an administrative error and another friend of mine is having to jump through a million hoops to get relisted because of his chronic rejection and I think someone I've really come to like and admire for her spunk and honesty may have had a dry run yesterday at my center and right now I'm just feeling a little discouraged at the process and at the fact that even on the pred and the azli I seem to be showing signs of an increased cough again, sort of that deep rumble in the pit of your stomach/lungs/soul that tells you the mucus is tasting grosser and the color is just a little off and whoops, was that just a little pleural pain or is that damn left lung collapsing on itself again (because I am, after all, a whole week out of IVs at this point). I guess I'm complaining because I went to get a glass of juice to take my nightly meds yesterday (at 2 am, thank you prednisone) and I actually started crying just a little at the thought of doing this to my body AGAIN -- of adding more chemicals and more side effects and more life-saving everyday miracles that I know I need but that sometimes just make things so damn difficult. I guess I'm complaining given the fact that I've now used no less than three curse words in my normally family-friendly blog.

It might be that all the waiting and the sickness is finally wearing on me just a little bit. It might be that I just need to admit to myself that this has been a REALLY rough year so that I can accept that and move on with it. It might be that I've gotten a little bit worse at sucking it up over the past 12 months or so. Or it might be the fact that two nights ago I messed up and added xopenex to my HTS neb cup, so that my treatment actually went xopenex-DNase-CPT-xopenex-moment of total frustration-HTS-Azli, and then last night I managed to change up the pattern a little by putting NOTHING in my HTS neb cup so that my treatment went more like xopenex-DNase-CPT-3 mins of blissfully unaware nebbing of nothing-more frustration-HTS-Azli. It might be any one or all of those factors, but I guess I am complaining. And maybe, like the lyrics to the old Bird's song (or the Bible) says, there is in fact a time and a purpose to do everything, even complain.

But right now I'm more hung up on a different set of lyrics that just seem oh-so-appropriate. Because how many heartaches must I stand, before I find the lungs to let me live again? And right now the only thing, that keeps me hanging on, when I feel my strength, oh it's almost gone, I remember mama said . . .

You can't hurry love. I mean lungs.