Imagine Me and You

Dear Donor Bob:

Happy anniversary!

One year ago this Saturday (June 11th) your family -- perhaps on your prompting? -- made a decision that changed my life forever. I remember it like it was yesterday, really. Sitting at an upstairs table in a busy NYC restaurant with my mom, dad, and sister, all of sad wondering if that crazy little miracle called transplant would ever come our way. All of us, that evening, had our doubts. All of us had fears, many of which we were too tired or terrified to even admit. We were testy with each other, fed up with the process, and we were waaaaay over the whole "dry run" thing. I personally recall feeling an odd mixture of grief and acceptance; after so many failed transplant attempts (and one very rare near-miss for organs) I had silently and secretly decided that perhaps new lungs just weren't in the stars. I didn't see how I could come so close so often without a match if I were truly supposed to get an organ. I was disheartened, and more than that I was really, really tired.

Tired of not being able to breathe.
Tired of missing out on my own life.
Tired of watching my family struggle.
Tired of the unknown.
Tired, most of all, of the waiting.

That all changed with a single decision, a single act, a single, precious gift from someone who had never even met me -- who was, in fact, unaware of my very existence. It changed, quite literally, in a phone call, in a breath, in a heartbeat. My sister claims she knew the second the phone rang that this was "THE Call." I was admittedly a bit more skeptical, and all through the hectic race to the hospital and then the even more hectic scramble to get me to the OR in time, I was fairly certain that, once again, something would come up that would keep me from receiving this priceless treasure of new life. I was, to say the least, a little bit jaded by that point in the process.

But I was also wrong. (And never, by the way, have I been so happy to write those words.) We were a match made in heaven set up by something far larger than ourselves -- and with a little help from some very clever matchmakers at my hospital. And if I sound a little overly sappy with that statement, well, I guess you're just going to have to bear with me on that one, because I can honestly say that you and I were meant for each other.

Bob, you came into my life at the perfect time, rescuing me not just from failing lungs but from a failure of spirit in one sweeping, gorgeous motion. I went to sleep that night somewhat broken, and I woke up not just restored, but also amazingly -- and irrevocably -- blessed. Because when I opened my eyes again on the morning of June 12th, 2010, I was not only wholly myself again; I was also imbued with at least a little bit of your light. And that, my friend, is a truly awesome thing, let me tell you.

And I really have to say, Bob, I couldn't have asked for a better partner for this journey. I mean, come on, how many men do you know who would tolerate a woman with some super disturbing little live-in "friends" (yes, pseudo, I'm totally looking at you) and put up with constant attacks from her very moody sinuses? Not many, in my experience. And yet you, friend, have weathered it all with a grace, good humor, and determination that even I find inspiring. It's truly breathtaking to watch you bounce back after every obstacle in a way my old lungs, wonderful and loyal as they often were, could never have done in a million years. I mean seriously, dude: way to breathe! And rest assured that I find it all beyond impressive -- even when the road gets, well, a little bumpier than you (or I) might have originally planned.

So today, beautiful soul, we celebrated you. And in case you missed it (which I know you didn't, because I could totally feel you with us): it was a celebration worthy of a hero. All of my friends absolutely loved you (they've had such fun getting to know you over the past 12 months, and were excited to finally raise their glasses to the man behind the magic), and you were a big hit with my family as well. All of which means, of course, that we're going to have to stick together. We're just too good an act to split up now. And hey, let's face it: we'd never be able to live without each other, anyway.

So to my friend, my hero, my beautiful stranger/soulmate: thank you for everything. I could never say it enough, but I hope that you know that because of you, I will forever breathe in beauty.

I have your lungs, and you, my friend, will always have my heart.

With Deepest Love and Gratitude,
Piper

The Conscious Patient Guide to The ICU

I am sitting in the thick of a vast, foreign jungle.

No, not literally, of course (though that would probably be more fun). The truth is that I'm just hanging out in the Medical Intensive Care Unit (MICU) of my hospital. They moved me down here for a desensitization that, thankfully, went off without a hitch last night -- thus leaving me one of the very few fully alert and conscious patients in here. I'm not complaining, by the way.

I have -- also thankfully -- only limited experience with ICUs in general, and definitely never have I felt so much like myself while in one, so needless to say I was curious. What is this strange underbelly of the hospital like, anyway? What are its customs, who are its people, and how exactly do they expect non-bed-ridden patients to use the toilet? Wracked with these sorts of questions (and labeled with a decade's old allergy to sulfa drugs) I decided the time had come to explore this relatively uncharted territory. And for those of you who might someday dare to follow me, whether by necessity or to satisfy your own super weird need to see it for yourself, I present "The Conscious Guide to the ICU."

1) There's no harm in asking.

Nurses and doctors say a lot of things, and generally patients are expected to ingest whatever is said and acquiesce to any requests while simultaneously absorbing important information. For example: "I need to put a heart monitor on you to make sure we can track any cardiac reactions to the drug, so if you could just remove your clothes and put on a gown we can get started." The nurse said that to me yesterday, and then she turned away and started playing with my IV pump. I didn't question the first part (the whole point of the ICU is, after all, increased monitoring), so I just asked two simple clarifications: what cardiac reaction were they looking for (answer: anything abnormal whatsoever) and could I continue to wear my own pants? She was surprised at the last part, but then shrugged. "Sure, I guess. There's no reason you have to change fully, it's just sort of standard in here." Bingo. Having your own clothes on makes everything better and less, um, uncomfortable.

2) Get creative.

The ICU is a lot of very wonderful things. It is a place of caring -- intensively, even. It is a place of healing. It is a place where you can lie awake at night (assuming you're clever enough to figure out when it IS night, since the lighting in here never changes) and be gently rocked to sleep by the sweet symphony of varied beeps and the whispery flush of a sink toilet. Heck, it is a place of sink toilets, and that alone should tell you just about all you need to know.

What the ICU is not, inherently, is a place of great humor. This makes sense, seeing as most of the people in the ICU are there for something serious, and are appropriately sad. If, however, you are not there for something super serious and/or you would simply prefer not to be sad, it can be helpful to supply your own humor. Examples that have worked for me include: shocking the ICU doctors by engaging them in any form of non-medical conversation (I spent 15 mins discussing the Comanche Tribe with some poor guy, after which we segued seamlessly into Kim Kardashian's ridiculously large engagement ring), playing "ICU -- Do You See Me?" with people walking by your room and staring in (basically involves matching their curious, concerned expression and staring straight back at them in an intense and pondering fashion as they walk past the glass), sketching designs for a better hospital gown, and pretty much any activity involving the aforementioned sink toilet. Bottom line: you have to at least TRY and keep things in perspective, and nothing is too silly or too stupid if it helps get you there. After all, you're not dead, it's not the end of the world, and even hospitals can occasionally be funny. I promise.

3) Stay active.

"Active" is to the ICU as "good" is to hospital food -- which is to say that no sane person would ever use the two in the same sentence. I get that. No one is suggesting you run a 5k in the hallway and, if your hospital is anything like mine, you might even find yourself significantly hindered in getting out of bed at all. So far in this stay I've stood up exactly 3 times -- each to visit the . . . um, sink. Nothing else is allowed.

So do what you can and what you feel up to, within reason. Swinging your legs, stretching, ankle circles, kicking the person who wakes you up at 4 AM for a chest x-Ray (it happened) -- these are all great forms of ICU exercise. Jumping jacks on the self-inflating, bedsore-reduction mattresses? Probably not wise. But I know for me personally a lot of my frustration in hospitals stems from feeling helpless and/or disempowered. Movement helps with this, and it helps with pain, and it helps keep me relatively strong so that I don't get discharged and find myself unable to walk and enjoy my new freedom. So it's worth it, plus it looks impressive.

4) Patience is an (overrated) virtue, darling.

Yes, I know you want to be a perfect patient. You want all the nurses and doctors and orderlies and that guy who empties the sharps container to love you -- and well you should. You are, after all, a lovable group. Plus being kind is always a bonus. But there's a difference between being kind and being invisible, and in the hospital it can sometimes feel like a fine line. Keep in mind that there is a LOT going on around you at all times in this place, even if it feels to you like very little is getting done. In an average hospital you're probably competing for everything -- from an available bed to a slot for a procedure to your nurse's attention -- with a minimum of 5-10 other people. I discussed with someone yesterday how every hospital process takes a ridiculous number of steps, and of course any patient also knows that there is always a limited window of time in which to get something done before you are inevitably trapped for yet another day in the hospital. I like to imagine a large herd of hippos with only a small pond of water that replenishes each day.

Guys, be the hungry hippo. Or the thirsty hippo. Or whatever. Just figure out a (nice-ish) way to stand out from the crowd, and figure it out soon. Case in point, I am now asking my nurse very sweetly every single time she comes in my room when I am going to be leaving the ICU to go for my PICC placement. And when I do finally go, and get back, I will begin asking (with equal frequency and equal sweetness) when I can go home. I will not be mean, and I will not take her away from her other duties, but I will insist she prioritize my case, too. And at the end of the day she will probably still like me anyway -- though if she doesn't I guess I'll never know, seeing as I'll be at home.

And last but not least:

5) Keep your eyes on the prize.

You know why you're in here and what you're fighting for. Use it. Seriously. Yesterday I forced Ben into a 10 minute conversation about random NYC restaurants we have yet to try. He thought it was super boring; I thought it was a lifeline. I'd talk about the weather right now, quite seriously, just to remind myself that outside these walls it is hot, and people are outside, and they're riding their bikes and walking their dogs and kissing their lovers and laughing with friends and thinking that maybe they'll go out for a glass of wine tonight before dinner. I love these people. They are my friends, my family, and my fellow NYers. I love that they're out there, living. And I can't wait to rejoin them in that universal activity.

Again.

- Posted using BlogPress from my iPad

6 Stages of (Hospital) Grief

I've noticed that every time I check into the hospital, I follow basically the same behavioral pattern. It's a fairly simple formula. First comes the moment when I suspect that something might be wrong and that it could, conceivably, be bad enough to land me in-house (keep in mind that I do most of my IVs and procedures as an out-patient, a personal preference that has, at times, both angered and delighted my various doctors through the years). As soon as I suspect this sort of "bigger" problem I start to prepare mentally, by which I mean that I become delusional and convince myself that I'm an extremely calm and serene person by nature (all evidence to the contrary aside). This part of my "Personal Patient Process" tends to involve lots of faraway, thoughtful gazes and the overuse of cliches like "it is what it is" and "things could be worse." On a more productive level, it is also characterized by an increase in my motivation to attack the problem itself, all in an attempt to avoid what is typically by that point inevitable. I do awesome things like cutting out all sugar from my high-fat, high-cal diet, or throwing myself even harder into exercise. Neither of these things has ever proven helpful, but I do them compulsively anyway, in the same way that I continue to pretend my dog might someday stop begging at the table. Sure, it's a long shot, but I'm a big fan of hope.

At some point during stage 1 of the process, I will also call and alert my doctor to the problem, assuming he doesn't already know. This part is tricky, because I tend to dislike it, but I'm also not suicidal, so I know it needs to be done ASAP. (I should note, at this point, that I only dislike it because I'm not a huge fan of feeling sick at all, much less admitting to anyone else that I feel that way. It is not in any way, shape, or form because I dislike conversations with my doctor generally, nor a statement about my team.) The other thing that makes this part tough is that it typically leads to stage 2: the moment when my doctor decides I need to be admitted, and tells me as much.

This is when I get sad.

Honestly, I think this moment is almost always the saddest part of my entire hospital stay, regardless of what comes next (with, of course, a few very notable exceptions). This moment to me represents pretty much everything I dislike about being a patient. It's the time when I'm forced to accept (again) that nothing I may have planned or wanted to do or hoped for will ever really trump CF. It's the moment when I have to acknowledge that everything I truly love and adore about my life is also wrapped up with a lot of things I truly dislike, and that the former simply isn't possible without the latter. It's the moment I remember that chronic illness is often way more than just a series of minor, fairly insignificant challenges or inconveniences; it has a much darker side too. And while, yes, I completely acknowledge that all of that might sound a little dramatic for a few days trapped in a boring hotel full of mostly much older people with a really bad meal plan, I still stand behind every single word of it. Because for me, personally, the hospital is very much wrapped up in the notion of submission to my disease -- something I think it's pretty obvious I don't like to do -- and I haven't yet found a way to reimagine that relationship.

Luckily for everyone involved, when stage 2 passes things tend to get better. Stage 3 in the hospital is kind of like a homecoming: It's annoying and hectic and definitely overblown, but I also get to see people again and I haven't quite remembered yet why I dislike being locked up so much. I'm also a little high on myself at this point for doing the smart thing and for being so darn nice. Blown IV? Laugh it off. 3 AM wake up call? What the heck, I slept fine yesterday in my own bed, so it's cool. This is when I put out my visitors welcome mat and vow that THIS time I'm totally going to wash my hair every other day while I'm in here. Depending on the length and intensity of the admission, this phase can last anywhere from 5 minutes to 5 days. Maybe longer, in a perfect world, but otherwise 5 days tends to be just about my upper limit.

And then we come to stage 4. The Wall.

Stage 4 isn't so much a state of mind for me as it is a trigger -- one relatively large event or a series of much smaller things that leads me to decide I've had enough. If I'm lucky, I can feel this stage coming on from a few hours away, and sufficiently warn people that The Wall is coming. I can suggest that maybe people might want to consider not visiting for a day, or running in, dropping off food, then dashing to safety until the next meal, much like I imagine the unlucky fellow who has to feed the bears and tigers must do at the zoo. And while it would be a fair statement to say that I'm not proud of the person I sometimes become during this particular stage, it's equally fair to acknowledge that I do, for the most part, refrain from causing any serious damage. I might snap, but I typically feel so guilty about 5 minutes later that I start entertaining crazy ideas like sharing my smuggled in non-hospital rations or allowing the wounded party to sit on my bed. Insanity, I know.

For the rest of the stay after The Wall, I typically slide seamlessly between some less-patient version of myself and a raging nutcase. Stage 5 is therefore lovingly nicknamed "The Asylum", as it more or less consists of me plotting escape and everyone around me deciding that I should probably stay put for a few more weeks, albeit most likely in the psychiatric unit upstairs and not the transplant floor. This is also the only part of the program that may or may not involve costumes (long story).

In the end, of course, I always get back to the same truth, which is that while there is plenty to complain about in here, there is also always plenty to celebrate as well -- such as friends and family willing to suffer through my antics. And even though this may not be the most fun place for Bob and me to hang out as we approach our one-year anniversary together (!!), I will say this: it is the right place. For now, anyway.

Which brings us to stage 6: Acceptance. Not that this is where I belong, but that it will bring me one step closer to getting there.

Stay well, beautiful people.

- Posted using BlogPress from my iPad

The Challenge of a LIFETIME

Some things in life just don't come along often.

For example, it is extremely rare for me to start off a thought, sentence, or blog post with the sentiment, "One of the reasons that I'm happy I have CF is . . ." That's not to say that there aren't certain elements of having this disease -- and sharing this experience -- that I feel grateful for, but I am gonna go ahead and admit that I am not, in any real sense of the word, all that grateful to have been born with a fatal genetic disease. But, like any rule, there are exceptions, and this is one of them.

One of the reasons that I am happy I have CF is, I get to meet some awesome, incredible, inspiring, amazing, and downright fabulous people. People, for example, like all of you.

Or people like Mike Freemantle, whom I had the total honor of meeting a couple of weeks ago. And though Mike doesn't have cystic fibrosis himself, I still have to give credit where credit is due to CF for this meeting, because Mike is the kind of guy who . . . well, let's just say that Mike is a man of extreme energy. It's the kind of energy that leads people to push themselves, to challenge limitations, and to go beyond their own experience. In short, it's the kind of energy that connects everyone who has ever pressed against the outer realm of the extraordinary -- whether by illness or by choice or by anything in between.

Oh, yeah, and it's also the kind of energy that might lead someone to look at an ordinary road bike and think, "Hey, I think I'll hop on that sucker and take a leisurely 21 day coast-to-coast tour through 13 different states. And what the heck, maybe I'll raise about $50,000 for the Greater NY Chapter of the Cystic Fibrosis Foundation while I'm at it in honor of my friend (and fellow amazing rockstar) John. You know, just for kicks."

Right.

All of which leads us to yet another one of those amazing events that just flat-out doesn't come along often enough. Because this morning at the ridiculous hour of 6 AM, Mike and many of his supporters stood in the even more ridiculous sudden rain shower that swept across Times Square getting ready to launch what must have initially seemed to many people like the most ridiculous thing of all. One man, one bike, one big RV with the Great Strides/CFF logo proudly displayed, and more than a thousand miles between Mike and his final destination. But anyone who knows CF knows that the seemingly impossible is sometimes the most important, non-ridiculous goal of all. And anyone who knows Mike knows that the same is true about him. Because believe it or not he's done it before, and now he's decided to do it again.

Only this time, it's for all of us.

Below are a few pictures of the magic behind the madness (and the man behind the magic). Please, please, please check them out, then go to www.freematour.com to join and support Mike on his cross-country bike ride for a cure. He'll be keeping track of his experiences, his route, his pictures (the man has a camera strapped to his handlebars, people!) and, of course, his fundraising.

Because things like this just don't come along often -- and when they do we should all be so lucky as to have the chance to go along for the ride.

Only 13 states -- because he's an underachiever

Flier used to raise awareness of the cause

The one and only FREEMATOUR BUS in Times Square

Gosh, that's a handsome . . . logo. Um, yeah. The logo steals the show.

1 Bike, 1 Bus, 1 Rainy Horizon

"What, it's so wet that even Times Square is completely empty? Whatever. I've seen worse."

Start Your Engines

One small pedal push for Mike. One awesome push for CF awareness

Mike, you've got the wind of 30,000 beautiful people at your back, dude. Best of luck, safe travels, and, above all, thank you. For the chance -- and the challenge -- of a lifetime.

Because of You

Dear Cystic Fibrosis:

I know it's been a while since I've written you, though I honestly can't say I'm sorry. It's true that you are not my favorite penpal, but in my defense, you've been kind of busy -- that whole "wreaking havoc on innocent, beautiful lives" day job of yours seems to take up a lot of time, plus I have yet to see you take a vacation. It must be rough knowing that so much is riding on your every move, that you literally hold the health and happiness of over 30,000 people just in the US alone in your hands. I'm not sure I would want that kind of pressure, to be perfectly honest, though I like to imagine that if I did have such power I would use it for good rather than evil. But hey, to each his own, right?

Anyway, I thought it was probably about time for you and me to get back in touch. In part this is because I think it's only fair to let you know that you are, once again, being a very royal pain in my butt. Not that you ever stop, obviously, but it feels like sometimes -- every once in a very blue moon or so -- you seem to back off just enough to give me a false sense of security. You lie low for a few days and I feel better, and my friends seem healthier, and no one is dying or sick or stuck in the hospital, and for just a few brief moments I remember that there was a time when I thought you maybe didn't matter quite so much. That maybe, if I kept my eyes shut and wished hard enough for long enough and with enough faith in the power of miracles, that you would just disappear. And yes, I feel weird writing that, even to you. It seems strange to have to tell someone (or something, rather) that you hate them. But I do, CF. I really, really, really do.

I hate you for what you do to my friends, for the lives you've taken, for the joy you seem to take in hurting families, worrying loving parents, leaving behind dedicated spouses, and doling out way more pain than any young child should ever really have to endure. I get it; I understand that you are part of life and that, like anything, you have your beauty. I see how strong you make people like my friends, who are facing sickness or transplants or second transplants or new additions to their families when they themselves can't breathe. I see the light that you spark in them and it is almost enough to make me think you have something to offer -- but then I remember that each of these people are strong DESPITE you, not because of you. And then I hate you all over again, and I realize that I simply cannot wait until the day when their collective light is allowed to burn even brighter without your darkness. Because let me tell you dude, it is going to be one hell of a sparkle show when that moment finally happens.

Which brings me to my second point, CF:

You don't stand a chance.

Nope, sorry, not kidding. I absolutely mean it. And as proof I've spent the last couple of weekends at events that have raised literally hundreds of thousands of dollars to eradicate your presence. I've stood next to friends and family members who have lost a loved one and who are still so dedicated to kicking your butt. I've watched in awe as one small child took her place in the center of a huge group photograph -- her future as bright as the smiles on her team members' faces. I've had the chance to be personally inspired by Mike Freemantle, who is literally riding his bike across the country to raise money for the Greater NY Chapter of the Cystic Fibrosis Foundation. I've seen people walk in the rain, people walking with strollers, people dressed in costume, and people coming together in mutual love, hope, and celebration.

And all of this, CF, is not because of you at all. It is despite you. It is not because you make us sick, but that we are strong despite your efforts. It is not because you rip apart our community, but the way we rally despite these great losses. It is not because we have no faith, but that we are hopeful despite your nasty tricks. And it is not because you weaken our spirit. It is that we will always be the bigger, faster, and more determined team -- despite it all.

So I don't mean to add to your workload, little monster, but if I were you I would consider taking up running -- and pretty fast too. Because if the heart, soul, and dedication that I've seen these past few weeks alone is any indication, you're in way over your head with this one.

And unlike the rest of us, CF, you are running alone.

Sincerely,
Piper

Our Little Monster

Got my biopsy results today.

I have what my transplant clinic described as "minor inflammation," which could be caused either by "true" rejection or just kind of brought on by the other part of the news, which is that my goo culture from the other day grew out our old friend pseudomonas. Talk about a party crasher. Anyway, the combined effects of these results is more IVs (polymyxin and aztreonam) for 3 weeks and a 2 week taper of prednisone until I get back to my maintenance dose of 10mg.

Luckily, the pseudo is just hanging out in my airway -- a sign that once again this is all about the sinuses and much less so about the lungs. Unfortunately, the added rejection/inflammation (it's been labeled as A1 rejection) means that I have to postpone my sinus surgery for 4-6 weeks to give my system some time to reset itself and avoid extre infection risk. And I also have to get another bronch in 3 weeks, which obviously isn't the best news in the entire world, though honestly they feel like old hat now. I think a part of me feels weird whenever I'm not on versed after the past year.

My general sense right now is that things, quite honestly, could be worse. Not sure if that's just because I have so many friends who actually are doing worse than I am, or whether it has more to do with the fact that actually facing up to the past year would involve going somewhere I just don't want to go right now. I think it's the former. Weirdly, the one emotion I don't feel right now is fear. I feel anxious to get to the other side of this bridge, impatient, frustrated, hungry (thanks, prednisone!), kinda whiny, and a little overwhelmed. But I don't feel scared. Somehow or another the last couple of years of living in constant infection have coupled with 29 1/2 years of life with cystic fibrosis to make me much more prone to sarcasm and humor in the face of illness than tears or nervous worrying. And I still haven't figured out if this is a good thing (because it keeps me sane and productive) or a bad thing (because it inhibits me from taking things seriously), but I can tell you without question that it is, for better or for worse, a Piper thing. I have the feeling it might be kinda rampant in the CF community in general, to tell you the truth.

At any rate I'm still at home vs. the hospital, I'm still confident that my doctor knows what he's doing, and I'm still at least somewhat on this side of the whole "not crazy" spectrum -- though that last one might well change after a couple days on high dose steroids, believe me. And for all of those things I remain, for now and for always, extremely grateful.

For all those other things, though, I'm not grateful at all, which is why I wrote a simple (and uncharacteristically "R" rated for my normal internet chatter) status update on Facebook this afternoon:

dear CF: fuck off, you little monster. thanks.

That one little sentiment got more "likes" more quickly than anything else I've posted on there. Ever. Which means that to anyone who has ever wanted to scream, cry, kick CF where the sun don't shine, and then run away laughing: don't worry. You have no idea just how not alone in that you are.

Much love and happy hunting to you all, my beautiful fellow monster fighters.

The News

In case you haven't noticed, there's been a lot going on around here lately. And believe me, it's fine if you really haven't noticed, because I've been a little absent and I realize that my last post was a little, um, cryptic? But the point is that whether it's been obvious on this blog or not, there has been (and continues to be) a heck of lot going on in My So-Called Cystic Life -- some of it good and some of it bad. So I thought I'd take a second to catch my beautiful breathheads up a bit on all the news in my life.

The bad news is that I remain on and off IVs every 2-4 weeks like clockwork, and have since my transplant almost a full year ago (before that I was just "on" though, so maybe this is better?). I'm always a little tormented about what (if anything) to say about that, but the simple fact is that I never promised this blog would be easy. I never promised it would be 100% positive. I never promised it would always be fun. What I did promise, however, is that it would be honest, so I figure I should just bite the bullet and type the truth. For the past few months my docs have been hardcore pushing a new drug cocktail on me, consisting of mostly polymyxin and aztreonam as opposed to my usual aztreonam/merrem/imi/cipro/cayston/levaquin/minocycline/whatever combo. It's been . . . um . . . well, let's just say that it's been interesting (and that it's involved enough walking into stationary objects to make The 3 Stooges extremely proud). It's also involved a couple of rounds of cefapime (neither of which lasted more than a couple of days before the drug was pulled due to allergies) and a whole host of other "fun" excitement from nausea to low WBC counts to weird pigmentation issues. (Seriously, if one more person asks where I got so "tan" they're going to get a squirt of polymyxin in the eye!) So, um, yeah . . . the past few months have been decidedly "not boring" from an infection standpoint -- although one has to wonder when the infection starts to just become "normal" and being healthy actually becomes the "weird and unsettling" part. I'm trying hard not to slip into the mindset, believe me.

The good news is, though, that while all of this has been pretty annoying, I really can say that it's been exactly that: annoying. As in, not life-threatening, not super scary, not mind-blowing, and not "oh my goodness get me out of here because I just don't know if I can take this anymore" style frustrating. Just annoying, plain and simple. My kidneys aren't failing due to the drugs, my lungs seem to be holding up just fine despite the onslaught, and my gut is . . . well, let's just acknowledge that they didn't give me a gut/pancreas transplant and leave it at that. (And to the CFers out there: don't pretend you don't all know exactly what I mean by that, by the way!) From a major transplant complication perspective, in fact, I really don't have much to report on here at all -- and for that I am beyond grateful.

The new news is that I did have a bronch last Friday, and after it was over I did in fact make it over to see my ENT in one of my hospital's outpost buildings way the heck across town. For those of you who may have already had the -- ahem -- pleasure of experiencing a bronch, you'll understand that going anywhere directly afterward defies all normal laws of logic, reason, and fentanyl. Nonetheless I was able to make it, thanks in no small part to my lovely sister, and while there I learned that my sinuses are pretty much completely blocked. As in, there was no black on my CT scan, in any of my sinuses. At all. So we went ahead and scheduled sinus surgery, which I'm really hoping can be done on an outpatient basis, and I think we're all hoping things get better after that.

As for the actual bronch, it was uneventful. Doctor found some slime in my upper airway (thanks again, sinuses!) and we're checking for rejection due to a very small dip in my more recent PFTs. The goo culture and the biopsy results should be in next week, but until then I'm choosing not to worry and to focus on things like CF awareness month and Great Strides instead. Not that I have anything against sinus slime, per se, but, well, it just doesn't make for a very pleasant weekend to dwell on that sort of stuff.

So that's the update -- 100% free from any crazy wordplay or other random piperisms. And I have to say that it really does feel amazing to write it out; to know that I have the sort of friends and community who is ready (and able) to receive this slimy, gooey, messy story of tangled IV tubing and annoying antibiotics and perpetual procedures without judgment and without shock or pity or total confusion; and, if i'm lucky, to maybe even earn the chance to let it go. And this should have been old news to me, I'm sure, because I don't know how many times you guys have taught me this lesson in the past, but old habits die hard and I think I will forever be the girl who would prefer to be cryptic than to be (almost) heartbreakingly honest.

Sorry guys, I had to do it.

So thank you, all of you, for teaching me honesty and for reading -- even when the going gets admittedly tough. I wish I had better words to say it. I wish that I had half the force as all of you together have. I wish that I could be as big of an inspiration for this community as it has been for me. And, above all, I wish you all lots and lots of news now and for a very long time into the future.

And all the friends you need to get you through it.