Don't Think Twice, It's Alright.

It's been approximately 36 hours since I first checked into the hospital for this stay, not that anyone's counting. So far in that time I've received 2 doses of 500ml IV solu-medrol (the steroid, and for perspective my maintenance dose is 10mgs), 1 dose of IV ganciclover as a CMV prophylactic (with another to follow later tonight), 2 doses of oral prophylactic antifungals, 2 doses of oral antibiotics for my pseudomonas, and 2 doses of 100ml rATG (aka, "rabbit juice") infused over approximately 8-12 hours to soften the blow of the side effects.

Also in that time frame, the elderly gentlemen across the hall from me have shown no signs of learning how to properly secure their hospital gowns in the rear end area. Not that I'm looking or anything.

I woke up this morning feeling kinda crappy. The first reason for this is that "woke up" is a bit of a misnomer; it would be more accurate to say "after remaining awake for the entire night, I felt pretty crappy in the morning when OTHER PEOPLE were waking up." Shocker, I know. IV steroids seem to do that to me. Add onto that the combination of general malaise from the drug itself and people coming in and out of my room all night to monitor my side effects, and you'll probably get the general idea of why it can be so hard to sleep in this place.

The second reason for the crappy morning is equally shocking: turns out human bodies aren't so hot on rabbit blood. Crazy, right?

But it ain't no use to sit and wonder why, babe. We just do what we do here to keep me breathing, and quite frankly I'm okay with that.

It's weird to think of poison keeping me alive, but in all fairness that seems to be what's happening. Treatments like this remind me that my body is essentially maintained in a state of toxicity for its own good. Transplant is like a sticky kind of compromise I reached with cystic fibrosis and my natural desire to live: I gave up my lungs and CF gave up part of its hold on me, and in return I got a beautiful life full of love and laughing and walks with my dog and talks with my friends and the sight of the Colorado mountains or the New York City skyline at night. And CF and its cronies got a kind of "get out of jail free" pass for most of my immune system function and now they get to play fun little games with rabbit blood. Sick little bastards, aren't they?

But don't think twice, it's alright.

When I think of this disease it's hard for me to see it as anything other than a monster, even if my life is in someways "better" for it. Meaning, I guess, that my life is better for pretty much every experience I've been lucky enough to survive and learn from, even if it can be tough to notice in the moment. I won't say I'm grateful to CF (it's taken too many of my friends for me to EVER say that), but I am grateful for the challenge. And if I can't say that I've defeated it yet, I can at least say that I've won a few well fought battles -- and come out the other side as someone I hope I can be proud of. Just as I know I'll get out of here soon even if 5-7 days seems like an eternity right now, I also know that my walk with CF and transplant won't be over for a while. I haven't shaken this little monster, but at least I was strong enough to change the game.  So if I can't say goodbye until the moment when we all can say it together, well, I know that's alright, too. As a matter of fact, I'm looking forward to it.

So I'm walking down that long lonesome road, babe
where I'm bound I can't tell.
But goodbye is too good a word, gal
so I'll just say fare thee well.
And I ain't saying you treated me unkind,
You could've done better,
But I don't mind.
You just sorta wasted my precious time.

But don't think twice, it's alright.

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.

(Almost)

Well, here it is, beautiful readers. Spring has finally sprung in all its (almost) warm weather glory, the West Village is full of (almost) graduated seniors who are all-too-ready to revel in the (almost) finished school year, my shorkie is looking (almost) skinny in his new summer haircut, and I've (almost) hit another milestone in this crazy, winding, wonderful and (almost) mind-blowing journey that we call post transplant life. By which I mean, of course, that as of this week I am (almost) at my 11-month transplant anniversary.

And, oh! readers, what a difference an (almost) year makes!

Because (almost) 11 months ago today I was still trying to recover from an (almost) transplant (aka the infamous "bad dry run") and was spending most of my time just struggling to breathe on (almost) destroyed lungs. The remaining hours were a toss up between the sleep that was my (almost) favorite activity during that period of my life, the treatments that took up (almost) 6 hours of every day, and the desperate attempts I made every so often to keep up with something that was (almost) like the life I had known before CF got the best of me. And, when I got really lucky, there were even one or two moments out of every day when I could (almost) forget what was happening to my body, thanks to the amazing community of friends, family, and yes, even doctors who (almost) always knew (almost) just the right things to make me feel (almost) better.

Or, to put it another way, life back then was (almost) all about the uncertain: those all-consuming goals that seem to lie almost within our reach, the destination that is almost around the next bend, and that pesky arch of pure color in the sky that promises a pot of gold if we can make it to that spot just almost right ahead of us. And it was, in a strange sense, an (almost) perfect way to live -- if only for the fact that it forced me to keep my heart in the moment and my eyes on the constant "almost" that was always just a little bit beyond my own horizon

Oh, yeah, and it was also (almost) 11 months ago when I sat down and wrote this:


In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later. ("It's My Party", posted May 12, 2010)

Wow. I guess sometimes 11 months can make (almost) no difference at all, huh?

Because the truth of the matter (or at least my truth, because that's an important distinction), is that while transplant has been (almost) unbelievable and sometimes feels like (almost) a cure, there are still times when I think that maybe almost just isn't good enough. There are times when I still --- even (almost) a year after receiving my beautiful, gorgeous, miraculous gift of life -- have difficulty writing on this blog. It's as if I'm (almost) afraid to share the fact that I've been back on IV polymyxin for (almost) an additional month now, or to admit that this means I've gone (almost) the entire time since my transplant still soaking up heavy-duty antibiotics like it's my job. And sure, I could mention the fact that my lung function right now is (almost) as good as I've ever seen it or that or that most days I wake up feeling (almost) "normal" (whatever that is, anyway). I could go on and on about how I'm (almost) able to feel like a dependable human being again because my 4ish-hour medical appointments are dwindling in number to an (almost) tolerable level where I (almost) don't leave in a murderous rage and am (almost) able to imagine that I have a life outside being a full-time transplant patient. Or, of course, I could let you in on the flip side of all that, which is that I (almost) always get home from even a few hours out exhausted because of all the side effects that come with my (almost) overflowing medication cabinet.

And believe me guys, I almost sat down to write about that all about once every single day for the past month. Almost.

I think the real truth of the matter is that there are always (almost always?) at least a couple of "almosts" in the mix when you're dealing with chronic illness -- or even with a chronic illness brought out as a sort of Hail Mary pass at a "cure" for the original chronic illness, as I'm now learning. There are always going to be issues -- some that are (almost) ignorable and others that are much more serious -- surrounding my own health and the health of those who share my disease. There are always going to be questions that don't have easy answers, or days when it all seems to come crashing down on top of us, or even those where we seem to come crashing down ourselves. There will be moments when we are overwhelmed by how much things have changed for us, and moments when we are equally as overwhelmed by how much they really haven't. And when it comes to all of that, I can say with absolute certainty that these are universal truths of human experience, every one of them. There's no almost about it.

And so tomorrow I will go to my transplant clinic, where I am (almost) sure that my doctor will stop my IVs and allow me to wait it out until my upcoming appointment for with my ENT -- which, by the way, is actually on the 12th and therefore explains why it would have been (almost) impossible for me to post this on my actual 11-month anniversary with my beloved Donor Bob. I am (almost) positive that the ENT appointment will lead to sinus surgery, itself another fun fact that (almost) everyone living with CF can look forward to at one point or another. And after that, if everything goes smoothly or at least (almost) according to plan, I am looking forward to maybe casting off this (almost) never-ending cycle of IVs and looking ahead to the next phase of this (almost) unbelievable experience of learning to live with (almost) perfect lungs in an (almost) never boring CF-meets-transplant-meets-Piper kind of life.

And I think I'm (almost) ready.

Seven Months Down and Oh, What a Ride

When I was a little kid I had two rides that I really, really, REALLY loved. The first was The Pirates of the Caribbean at Disney World, which was popular with my family as it was the only ride that both my sister and I enjoyed. The second ride, on the other hand, was slightly less involved and didn't require a trip to Florida: namely, the tilt-a-whirl at a local Colorado amusement park.

And wow, did I ever LOVE that tilt-a-whirl. Honestly, I was such a fan that I would literally beg for days to visit the park, and I once jumped out of a moving vehicle in an attempt to get on the ride five minutes faster. Yes, it was stupid and dangerous, but it was also an act of pure, unadulterated love. I mean, this ride and I were like a match made in intentionally induced nausea heaven -- how could my parents expect me to wait until the car was safely in a designated parking space for that kind of fast-paced, dizzy, scream-your-guts-out (and I mean that all too often in the literal sense) joy?! Clearly, they could not.

Fast forward about 20 years to the present. There aren't a lot of tilt-a-whirls in New York City (Coney Island excepted), and if there are you probably aren't going to find them in the West Village. Good coffee and amazing shopping? Check. Old school amusement parks? Not so much. It's a bit of a bummer, but then I remember that I don't actually NEED to pay $5 and step right up to get that kind of excitement anymore. Why, you ask? Because I've had a double-lung transplant. I get it all for free.

(*Dear readers: obviously, transplants are not free. They are not even close to free, as a matter of fact. I'm quite certain that this transplant is the single most expensive thing I have ever "purchased" in my life, in more ways than one. Just ask anyone in Arizona. But for the purposes of this post, I mean "free" as in I don't pay any extra for the excitement part. That's just like the added gift with purchase -- much like the grey crewneck that apparently comes with every purchase of "Pajama Jeans." Seriously, look it up.)

I have to admit that I personally feel my life has gotten less dramatic in the 7 months I've been living with these lungs. At the very least I feel more stable -- mostly because I don't spend all my time worrying about when or if the other shoe is going to drop. I'm pretty secure right now in the thought that I am alive, and to the extent that I might not be alive in a few years or even months, well, I guess that's true for everyone, everywhere. I just don't have the energy left to worry about it all the time after having done it for so many years already.

But I will also acknowledge that, for me at least, the drama seems just a bit more disheartening right now than it did back then, because before at least I could explain it. I could say with certainty that I was sick because I had mucus clogging up my lungs, and said mucus was infected with several strains of nasty bacteria that were slowly wreaking their havoc. I could feel the symptoms of every new infection as they came on and I could make fairly educated choices after considering both my mental and physical needs. In other words, I knew what was happening and I understood why, so even though I was scared I was also, in some ways, empowered. I felt 100% confident asking my doctor about a new treatment option or asking if I could attempt an alternative to one of her suggestions, because I knew what the risks and benefits were to each approach.

The thing about these past 7 months is, I no longer truly understand my body. This is, of course, not entirely true because I still know how to recognize things like a cough or a virus or whatever else. But on another level, I feel pretty clueless. I rarely cough enough to feel concerned because, quite frankly, 7 months ago even my best day sounded like a trip to your local TB ward. Now my worst day involves a few minor coughing jags set in between other "normal" activities, and it just doesn't feel like that big of a deal. On the other hand, I'm becoming more and more aware that most of my friends post-transplant don't spend their first 7 months constantly on IVs. I'm starting to get a few curious souls asking why I seem to require such aggressive treatment, and my honest to goodness answer is: I don't know.

What I do know is pretty straightforward, though. I know I have some leftover CF pathogens (namely pseudo and some recurring fungus) in my sinuses and trachea and that these sometimes drip down into my lungs. I know I've cultured some new bugs since my transplant, most likely due to my weakened immune system. I know that at least a couple of these bugs are fairly resistant and that I have some additional issues with antibiotics (such as hearing loss from Tobra and just plain old allergies) that make selecting an effective combination difficult. I know that I am blessed beyond measure by a very proactive transplant center and a doctor who favors an aggressive approach to treatment, especially right after transplant. I know that 7 months later I FEEL fantastic -- I can exercise and play with my puppy and have fun with my friends and go to the gym and do (almost) everything I've wanted to do for so long -- but that apparently my clinical results are still finding the right balance. I know that I am still absolutely as stubborn and impatient as that hard-headed little girl who took a flying leap out of her parents' Jeep Cherokee and ended up sitting by herself on the pavement -- a little scraped up but ultimately no worse for the wear.

I know that this is not going to be what the rest of my life is like post-transplant. I know that.

So yes, I am 7 months and a couple of days out of transplant. Yes, I am still constantly on IVs and I still have my port-a-cath in my chest. Yes, I really do feel as good as I claim to pretty much every single day -- I wouldn't BS to you guys about that, I promise. Yes, I get frustrated but yes, I still really respect my docs and am grateful to be where I am in terms of long-term follow-up care. And yes, I would do it all over again in an instant, in the blink of an eyelash, in a heartbeat.

Or maybe just in a breath.

With love, light and seriously immeasurable gratitude,
The Girl Who Cannot Wait

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.

What I've Learned (So Far)

Alright, so when we last left off I believe I was on IVs for pseduo and aspergillus, and they had recently discovered mycobacteria in my lungs as well. Of course, a lot has happened in the weeks since then, most of which is far too boring to repeat here -- a fact for which I am eternally grateful. So I'll just stick to the highlights (and lowlights, as the case may be):

-The mycobacteria was identified. I had a CT scan which did, in fact, show a few nodules in my lungs. However, nothing too concerning, so we decided that at this point, it's probably better not to treat the pesky stuff. We're hoping the nodules will disappear on their own (I know many people who have had this happen, so I'm pretty optimistic). My theory is that I will walk through fire, if need be, to keep these lungs healthy, but I also trust my doctors and know that sometimes a nodule is just...well, a nodule. And it's gonna take more than a nodule to bring me down, I promise you all that.

- Unfortunately, the very clinic visit that brought news of the apparently benign nodules, also brought a nasal swab due to a cough/runny nose combo. The nasal swab itself was comical, mostly because my poor doctor clearly doesn't enjoy inflicting discomfort, whereas I have CF and kind of just wanted to take him by the hand and explain that I've had about 600,000 of these things in my nearly 29 years on this earth and really just don't care. Luckily we got through it together (classic doctor/patient teamwork on that one), but unluckily the result showed parainfluenza -- a pretty common virus that tends to cause the common cold, but in transplant patients can be far more complicated. So I got to add an oral antiviral to my 3 oral antibiotics, 1 oral antifungal, 2 nebulized antibiotic/antifungal meds, and three IVs.

-On the plus side, even that didn't stop me from sharing a fantastic weekend with my beautiful cousin Gloria, who came to visit and enjoy everything from Dylan's Candy Bar here in NYC t0 a Broadway show. Really, is there anything better than family? On top of that, Gloria and her husband and 4 beautiful kids have participated in TONS of CF fundraising and activities this year. They have been an incredible support for me and the members of my immediate family (as have all my extended family members) and they deserve special recognition for the kindness and love they spread like wildfire everywhere they go. I am blessed beyond measure by my family, and I can't say it enough.

-I eventually came off theses drugs, and one-by-one they started dropping like flies. Seriously, is there any better feeling than tossing that empty prescription bottle? Or pulling that IV needle out of your port and jumping in a hot shower? Answer: yes. The better feeling is getting your energy back, feeling on top of the world again, and being able to eat everything in sight. That, my friends, is pretty indescribable.

-But sometimes even hard-won victories are short-lived. Which is why, today, I had a repeat bronch to make sure all the bacteria were gone. And unfortunately, they are not. There is a LOT less of them, which is awesome, but in the world of pseudomonas and new lungs, better is rarely good enough. All of which means that I will be restarting IVs this week, though hopefully on a much smaller scale. I'm just waiting to hear from the doctor about what drugs we're going to use and for how long. The silver lining is that we're on the right track, and the nodules (while still there) have yet to cause any issues.

My doctor did say that this sort of infection cycle is not uncommon in CFers immediately post-transplant. He isn't concerned, which gives me a lot of confidence, and he thinks that we just have to get over these humps to get to the other side. I may have mentioned before that I think I have a fantastic transplant team, and I trust them wholeheartedly to wipe out whatever is growing in there. Plus I'm pretty sure this psuedo wasn't counting on my total determination to kick its butt when it decided to attack my lungs. Bad move, bacteria. Better luck next time.

But the most important event of these past few weeks can't really be captured in a bullet point. Basically, this whole roller coaster of up and down and infection and meds and viruses and life and everything in between forced me to somehow reexamine what I thought transplant would be like. I know it sounds weird that I'm almost 5 months post-transplant and talking about my expectations for life after surgery (guess I'm a bit of a slow learner!), but the truth is I think it's taken me this long to even wrap my head around what has happened to my body. Around all that I've won and all that I've lost. Around all the blessings and all the challenges. Around the partnership between me and the wonderful Donor Bob. Around...life?

The fact of the matter is that transplant isn't perfect. There, I said it. And I mean it. More and more I'm learning that transplant is a mixed bag -- a lot of very wonderful things and a lot of annoying, sad, or downright scary things. Which is okay, really, because what thing in life doesn't come with a few kinks in the line? What experience worth having has ever been super easy? So while sometimes (like now, when I've been fighting pseudo for over a month), I still feel more or less like I did when I had CF lungs, there are other days when I feel like I could literally climb Everest if I had a warm enough jacket. And somehow that works for me. That balance, imperfect as it might be, is really all I need. I'm pretty sure perfection wouldn't suit me very well anyway. That said, I'm willing to try it if I get the chance (hint, hint, right God?).

The thing about where my life is now, in my opinion, is that it's really...well...normal. It's pretty run of the mill in a lot of ways. True, most people aren't immuno-suppressed. They can order raw fish in restaurants and they can go to crowded concerts without a thought. They also probably didn't have a bronch today, just as they probably won't have one ever, and they aren't breathing with someone else's lungs. They might have never been on IV antibiotics and they don't spend much time in hospitals if they're lucky. So when I say my life is "normal", rest assured that I don't mean that my life is the same as your typical 28-year-old's. It's not.

But it is similar to other people's lives in the sense that everyone faces this kind of thing, albeit on varying scales. Everyone goes through highs and lows, and everyone has disappointments and struggles. The more I live with these new lungs, the more blessed I feel to know that my story, in many ways, is pretty much what we call life. It's comforting to know that although our stories are uniquely ours, they are also, in many ways, one and the same. I'm not going to claim that I'm perfect at remembering that all the time, but I am getting better, and that's one lesson I'm insanely grateful to have had these extra 5 months to learn.

None of which is to say it's not frustrating to have to restart IVs, or go to a last-minute bronch, or deal with scheduling snafus or waiting rooms or whatever other challenges life decides to throw at you. These things are annoying, and frankly I think it's okay to react to them -- up to a point. But in the end I might venture to say that maybe these challenges help keep life interesting, and even more importantly: maybe they're not any better or any worse than what anyone else is going through. Maybe we can learn how to feel our own pain and summit our own mountains without comparing them to the hurt or the obstacles faced by others, and while still supporting others in their climbs. And maybe the best thing we can all do to honor our collective struggle is to trust that together, we'll probably make it through. Or at the very least, have a whole lot of fun trying.

And at the end of the day, there is in fact an "I" in "community", but it's only one letter out of many.

With love and light.

Of Bugs and Blessings

Okay, seriously, I think something out there is mocking me for complaining about not really having much to write about on the CF/transplant front lately. And when I say "mocking," what I really mean is "trying to drive me insane." Because there has been A LOT going on here in the past couple of days. And while it's mostly not what I would call particularly good news, it has served as a much-needed reminder of all I have to be grateful for, and everything I've gained since June. Which is, you know, never such a bad thing to be reminded of when you get right down to it. On the other hand, I think I've learned my lesson now.

Can we go back to boring, please? I promise I'll be good and not complain. Honest.

The first thing that happened, as you may or may not know from the blog, is that I had a bronch and got a little sick. That, in and of itself, is neither uncommon nor a particularly bad sign. Most likely it was more a reaction to the sedation anyway, and not any sort of indicator of overall health. Because the fact of the matter is I feel more or less fine, and I certainly felt great going into the bronch. If anything I've been living life a little too much lately (wait, is that even possible? But I know you guys understand what I mean). It just feels beyond amazing to be able to breathe, to have the freedom and the energy and the time to go where I want and do what I want and come home and not be run ragged. I can't even explain it. And that is definitely blessing number 1, since we're counting and all.

But anyway, I got a little sick (okay, fine, it was a lot sick - only it was for like 2 days instead of weeks, which is the big difference between now and before if you ask me), and then I got better. And then we found out that I had pseudo and aspergillus growing in my lungs - most likely stowaways from my CF lungs that had been hanging out in my sinuses and main airway, both of which still have CF of course - and we started treating those with IVs and nebs and orals, just to be safe. Which, of course, was all well and good especially for those of us in the "better safe than sorry because I no longer have an immune system to speak of because I (heart) my lungs and want to keep them" camp. Basically I was grateful to have treatment options, grateful to be able to do things from home instead of in the hospital, and grateful to have had 3 weeks off of IVs from Sept until October. All was right with the world.

A couple of days ago, my doctor called to tell me I had a new pathogen in my lungs - one not there (to any of our knowledge) before my surgery. This new bug is called Steno Malt, and interestingly enough another of my CF friends had recently cultured it as well. (Interjection: not only is this bug not passed person-to-person, but this friend lives out of state and I haven't seen her since my transplant, nor have we exchanged anything by mail. So unless the bug jumped out at me through her FB page, I'm guessing this isn't a cross-contamination issue. If bugs are spread via FB, on the other hand, the CF community is, in a word, screwed. Talk about giving new meaning to the term computer "virus.") Okay so fine, I have Steno Malt. The good news is that with my new lungs not having CF nothing is likely to colonize in there. So we discussed treatment plans, added some antibiotics, and I went on my way. No used crying over, um...spilled (Steno) Malt?

Fast forward to today, when I got yet another call from my doctor. Yeah, that's right, here we go again. Only this time it was a little weirder and little more creepy, to be honest. Apparently I have a mycobacterium in my lungs. No word yet as to which - only that it is NOT tuberculosis and NOT mycobacterium avium complex (MAC). I guess that means it may be abcesses, but again - we're just not sure. I am going to take the cautious route and have a CT to check for any possible nodules, which can be a byproduct of these bacterium and can, so I understand, cause all sorts of problems. Depending on the results of that, and the culture when it finally grows out, we'll devise a treatment plan (if any). In the meantime, I figure I can only make the situation worse by freaking out. Many of these myco strains aren't even really issues, and again, it's unlikely to colonize at this point from my understanding. Also, I can't stress enough that I don't appear to have an active infection right now. I'm feeling pretty good (tired from the drugs, but good), and my PFTs are totally stable. I'm so so grateful for that - and for the fact that my new lungs are still holding up beautifully despite this onslaught. Sorry, CF, you're gonna have to take your reign of terror elsewhere, because I'm not buying it. Welcome to blessing number 2.

I kind of feel peaceful about the whole thing, or as peaceful as it's possible to feel while still being (admittedly) a little freaked out. I have an entire team of great doctors who seem to be all over this - I even ran into my CF doctor yesterday and she's being consulted as well. Nothing makes me feel more secure than knowing that they have a plan (even if that plan is to do some tests and see...or even just wait) and that they're communicating that plan to me. The fact of the matter is that I trust them. A lot. And I feel very well taken care of, much as I may joke about them being hyper-vigilant. So right there: blessing number 3.

And finally, I realized at about 12:30 am this morning that yesterday, October 12th, was my 4 month transplant anniversary. Has it really been that long? And at the same time, has it really ONLY been 4 months? Wow. At first I felt a little sad that I had let the day pass without a celebration, to be honest. I mean, not that I need a reason to put on a fun dress and indulge in some really yummy food, but it's always exciting to have a special occasion, right? And then I realized that I hadn't noticed because I was too, well...busy? Happy? Not sitting around thinking about being "sick," even in the midst of all this madness? And that, friends, gave me more cause fr celebration than anything. I actually laughed out loud. To actually have a transplant anniversary is an amazing gift. To have a life so fun that you can actually forget about that amazing gift, if only for a short while, is, in a word: indescribable. Not that I would ever want to stop acknowledging and being grateful, but to have the chance to live so hard that I don't even think about my lungs? I honestly never thought I would type those words. Blessing number 4, and 5, and infinity. That one counts for everything.

Oh, and thank you, donor Bob. We make an exceptional team. (PS: Sorry about the pseudo, and the steno, and the myco. Wish I could make these silly bugs leave OUR lungs alone!)

So yes, I've learned my lesson. I'm back to counting my blessings out loud, which always seems to help when I feel a little overwhelmed, and to be honest I keep coming out ahead in my tally. I know how lucky I am to be able to look at this as a "rough patch" rather than the rest of my life. I know how precious and fragile this gift is - how much it is meant to be loved and enjoyed and cherished for exactly what it is...not a cure or a rebirth so much as a beautiful awakening. I know that God has given me this peace for a reason and that I should trust. Mostly I just know that I'm happy and busy right now, and so far it doesn't seem like the pseudo or the myco or anything else has been able to take that away from me.

I also know that CF sucks. You know, just sayin'.

Hopefully I'm well on my way to getting back to boring. In the meantime, I'll just try and enjoy the ride as much as possible. And hopefully I'll keep on forgetting what day it is, even as I try to always remember to be grateful for each and every one.

**PS: Please take a second if you haven't already to check out the links on CF/transplant over on my sidebar. I recently added two amazing blogs (A Breath of Fresh Air and Seven Stars) by two wonderful women with CF who also happen to be personal friends and role models of mine. Everyone else on there is great too, and please send me an email if you'd like your blog on the list. I'd love to check it out.**

Winding Road

I had a conversation with a friend the other day that went more or less like this:

Friend: So do you still run your blog now that you've had your transplant?
Piper: Yeah, but I'm starting to feel like a bit of a sham, you know, because I just don't feel like I have a lot to write about these days on the health front. Not that I'm complaining, but I'm a health blogger who is, well . . . healthy (relatively speaking, of course). Where's the fun in that?
**Cue loud barking by Sammy apropos of absolutely nothing**
Friend: Well, your dog's pretty crazy. Maybe you could blog about him if you run out of health stuff?

Just a warning, by the way: This blog is NOT going to be about my dog.

I had a bronchoscopy yesterday as part of my 3 1/2 month post-transplant work up. For those of you who might not understand what this means, the short description is that they sedate you heavily with fentynal and versed and then stick a probe down your mouth or nose into your lungs. Once down there they do fun things like check out your lungs with a camera, remove bacteria for cultures, and (if you're really, really lucky) pull off pieces of your lung to send for biopsy. Good times, right? Although to be fair, it's not that unpleasant of a procedure overall. I had one of these things pre-transplant to re-inflate a collapsed lung and have had several post (for over 2 months I was having them weekly), and frankly the biggest problem I've had so far is that I apparently don't do sedation -- at all. By which I mean they have to give me roughly the amount of sedatives they would normally give a 300lbs man, and even then I stay awake through the whole thing. But even that doesn't really bother me much. I guess I just really trust my doctor.

So anyway, yesterday's bronch really wasn't that big of a deal, in theory. (Other than the fact that my port is no longer accessed, that is, which meant that I had to get a peripheral IV. To the nurse's credit, it only took her a few tries.) I checked in, did the normal workup, and headed back to get my drug on, so to speak. The plan was a quick nap, wake up in recovery, then go home and get some well-deserved lunch.

Ever notice how things rarely go according to plan?

Here's what I know:

1) Despite the fact that I'm still on vfend and abelcet since my transplant, I now have additional aspergillus growth. In other words: more IVs. I get 4 weeks of mycofungin starting as soon as they come to access my port. The good news is I got a full 3 weeks off. Just off the top of my head I can't honestly remember when the last time I had such a long break was. How's that for a bright side?

2) Something happened during or after the bonch that made me, well . . . the nice way to put it would be "sick." The not-so-nice way to put it would be "what the hell?!" Seriously, the combo of fevers/vomiting/chills/etc and bronch sedation is not, shall we say, a particularly fun one. Let me put it this way: I'm used to being able to kind of "take charge" when I'm sick, particularly if someone like my mom isn't around. I can be wracked with fevers and having a near-death experience, and most likely I'm still going to be calling the shots and ordering people around. Unfortunately, post-bronch I can't really do any of that. Normally I go home and sleep for about 6-8 hours after those suckers, so clearly I wasn't in much of a state to make coherent decisions. On top of that, there was absolutely nothing anyone could do to "cure" the problem. I did have the presence of mind to contact my doctor, who had me keep an eye on things and was able to check back in on me today, but beyond that it was either go to the ER and wait it out there or just suffer at home. And of course I think almost any sane person would choose home over ER. And so I waited, and in the meantime kept drifting in and out of consciousness because of the sedation, which of course made the fever seem even scarier for those on the outside. Did I mention that this is not such a good combo? Every time I tried to rally long enough to explain what was happening I got blank stares, probably because for all I know I wasn't even forming a coherent sentence. All of which, I maintain, was not my fault.

Ending hatred, securing world peace, and curing all diseases known to man? Sure, why not -- anything's possible.

Functioning like a normal human being after essentially having been given elephant tranquilizers for breakfast? Not gonna happen. Period.

3) I'm still waiting for the rest of my results from the bronch and for whatever comes next. That's about it from the health front, so please just send some good thoughts/prayers/positivity up into the universe for me, and for all of us, whenever you get the chance.

4) Despite the fact that I promised this blog would not be about Sampson, I did notice yesterday during my random return to the land of the sick that his mood is 100% different when I'm under the weather. Among several weird behaviors, he began pulling all his toys 1 by 1 out of his toy box, a habit I remember from my pre-tx days but which I had more or less forgotten. He does this for comfort, I think, or to let out aggression, or perhaps even for attention. Maybe all of the above. But he does do it, and he also gets incredibly nervous as soon as I start acting "sick" again. Poor puppy. He's a good little guy, for all his crazy nonsense.

I guess in the grand scheme of things my life is still pretty "boring." I'm learning French, speaking to groups of med students, playing with my puppy, going to the New Yorker Festival (among other amazing things, I saw one of my favorite authors, Mary Karr, speak on Friday night), meeting new friends, and doing gyrotonics. And I guess above all I'm grateful that last night was such a big deal, because the fact of the matter is that I still remember a time when it wouldn't have been a big deal at all. And considering that such a time was really only 3 months ago, I have to say that I think I've come a long way, baby. I've just got a long way left to go, I guess.

But I'll get there.

Serum Sickness

If you have CF, you're most likely a little bit of a druggie. Or at least, here's hoping you are, because drugs and pills and medicines and pharmacies are, let's face it, just a way of life for most of us. Our pill organizers and neb cups runneth over, to borrow a phrase, and for the most part that's a very, very good thing. After all, that life expectancy doesn't just keep increasing itself -- it's all thanks to developments and breakthroughs in the therapies and treatments we use to stay as healthy as we can for as long as we can, God and that pesky pseudomonas willing.

But what do you do when the "cure" becomes, well, not so curative? What happens when the options available to help keep you healthy suddenly turn on you, and you find yourself getting ill from the very weapons you use to combat the illness?

Fasten your seatbelts, ladies and gentlemen, because you're about to get on board that delightful little ride we call serum sickness. And just to warn you, things might get a little turbulent in here before it's over.

Serum sickness, for the blissfully uninitiated, is what happens when your body becomes ill in response to a drug used to treat an underlying condition. It's similar to a classic allergic reaction, only the symptoms are more immune-system based (so think fevers, feeling ill, swollen lymph nodes, nausea -- all the good stuff). And the treatment, as well, is similar to a classic allergic reaction, only you're dealing more with corticosteroids (hello, prednisone!) rather than, say, a quick dose of benedryl. In other words, it is not. fun. at. all.

For some reason or another I seem prone to serum sickness reactions, especially when it comes time for IV antibiotics. I used to only use tobra and cephalosporins whenever I needed a tune-up, and I noticed that I would often get fevers, vomiting, and general malaise within a few days of starting the drugs. This probably should have been enough to tip me off that something was wrong, especially when the fevers started creeping up toward the 103 range and the vomiting became a near constant issue, but in addition to my CF I seem to have a self-diagnosed case of "tough it out syndrome." Meaning that, since everyone knows IV antibiotics make you feel like you've been hit by a MAC truck for the first few days, and since I can only assume someone who had just been hit such a truck might experience fevers and difficulty holding down food, I decided pretty much unilaterally that what I was experiencing was "normal." So, while I never hid the symptoms from my doctor at the time, I also never really expressed just how serious these flu-like bouts of illness really were. And because I would finish the IVs and immediately start feeling better -- no more vomiting AND no more stupid CF infection! -- I just assumed we had to be doing something right. All of which combined to make it several years (and a fever of over 104) before I actually voiced the somewhat perplexed opinion that something maybe wasn't so normal about all of these issues, at which point I was immediately removed from the cephalosporins and began discovering that medicine could actually make you feel better -- without first making you feel like you were dying. Call it a revelation, call it an epiphany, call it whatever you like. I just called it a major relief.

Unfortunately as my has CF progressed, so has the list of drugs that cause these types of reactions. It now includes zosyn (antoher previous go-to drug) and, in what has to be one of the most ironic twists of my disease so far, even merrem. I say ironic because I actually participated in a study at one point at my pediatric hospital to see if IV merrem was effective with CF infections. I was lucky enough to get the drug at that point rather than the placebo, and my PFTs skyrocketed from a baseline of about 85% to over 100% for the first time since I was a young child. My doctor immediately declared merrem our "ace in the hole" and from then on I had visions of merrem as a miracle drug, ever at the ready to swoop down and kick some serious PA (pseudomonas ass). More recently, though, my knight in shining IV armor has started letting me down, and although I still call him into battle every so often, I've started having to seriously monitor his behavior with -- yep, you guessed it -- more prednisone. It's a tricky situation for sure, and one which constantly challenges both my doctor and me to walk the line between controlling my CF infections and controlling the reactions that require more drugs that are, themselves, not so good for the body.

But hey, nobody ever said CF was easy, right?

I guess all of this is a really long way of explaining some of what happened yesterday at my transplant clinic appointment. Unfortunately, we got some startling news regarding my position on the list -- news that reminded us all, once again, that this is a delicate, frustrating, ongoing, and most of all unpredictable process. And there's no way for anyone to change that fact.

I know transplant is the right option for me given my disease progression and my personal belief system and philosophy. I also know that getting new lungs, like living with CF, is never easy. No one ever promised it would be -- quite the opposite, actually, as we were told over and over again by friends, doctors, and just about everyone else who's ever "been there" that the journey would be, at times, grueling -- and maybe it shouldn't be anyway. Maybe it's necessary to walk through some fire in order to truly appreciate just how amazing this gift from a stranger willing to rise from the ashes of personal tragedy and share his/her life with another really is. Maybe you need a little fire and brimstone to really grasp the miracle that is transplant. Maybe.

Or maybe not.

Because even though no one promised it would be easy, the two words that popped into my mind yesterday as I packed up to leave my center were simple and all too familiar to me as a CF patient: serum sickness. By which I mean that we have reached a point in this transplant odyssey where the process itself has become draining, leaving all of us feeling just a little bit sick and wondering if what we're going through is, in fact, "normal." Only this time there is no prednisone, there is no other antibiotic waiting in the wings, and there is no way to simply check into the hospital for a quick desensitization. This time we're left to find our own way off the ride and back on track to the healing process, and let me just say that the path is definitely not a clear one.

But you know what, that's okay. I'm actually okay with all of this right now, maybe even more okay than I was a few days ago. Because just like that moment when I finally realized that IV antibiotics don't have to come with a side of spiking fevers and uncontrollable nausea, I feel as though yesterday was a bit of an awakening for me. An awakening into a world where it's okay to talk about the fact that transplant isn't easy; okay to have long, drawn-out conversations with my CF doctor about what's truly going on in my life and my lungs; and okay to recognize that there is, in fact, a balance between being grateful for the "cure" and being aware that sometimes even the best things we can do for our bodies have unpleasant side effects.

Call it an unasked for lesson, but it's still, once again, a huge relief.

Wearing My Heart on My Sleeve (Or on My Blog, Anyway)

First things first: I didn't get admitted to the hospital.

Okay, now that we've gotten that out of the way, I think I left a few details out of the last post, which is probably to be expected from an attempt to post a blog immediately after returning from the ER. So, backing up a bit, let me explain why I was in the ER in the first place. I think I mentioned that I had a resting HR of 225 bpm for over an hour before I headed in, which probably sounds completely insane, but for me is, well, only mildly nuts. I also know that I mentioned SVT, which stands for supraventricular tachycardia. In my case, this is caused by something called an "accessory pathway" in my heart. When triggered, this accessory pathway kicks in shortens my heartbeat circuit. So think of it this way: an electrical impulse travels around your heart by a predetermined pathway in order to cause a heartbeat. I have an extra pathway that cuts off some of this normal circuit, and when that pathway is switched on it causes my HR to speed way up, because obviously it takes less time for the electrical impulse to travel the shorter circuit. It's kind of like a heartrate shortcut, I guess. And when this happens, my HR jumps from its normal rate of about 100 all the way up to 225 in literally and instant. And when it stops, it drops back down just as quickly.

The good news is, SVT isn't usually a major issue. It can cause problems, and some cases can even be life-threatening, but I've been lucky enough to always be able to break the attack and switch "off" the accessory pathway by myself, at home, without medical intervention. It normally takes 10-20 minutes of lying down and performing things called vagal maneuvers. These are a series of progressively more and more embarrassing tricks to try and slow my heartrate by stimulating the vagus nerve. And the really cool part is that it's best to have someone with you as you perform these circus acts (examples of which include bearing down like you're trying to make a bowel movement, forced gagging, and submerging your head into ice water), because if you pass out at any point or feel dizzy it's probably time to head into the ER. Fun stuff.

I didn't pass out, but I wasn't able to stop it either. So after an hour and 15 minutes of groaning on my mom's bed with ice packs over my eyes, I finally gave up the ghost and made my way toward a downtown hospital (read: not my CF center), with strict instructions to call or page my CF doc with any developments.

Upon arriving at said nameless downtown ER, I checked in at registration and headed to triage, where I used my pulseox to try and convince the triage nurse that my HR wasn't playing around. No go. She told me I would have to wait "at least an hour" but that in the meantime she had orders to give me a quick EKG. I counted that as a partial victory and headed back with yet another nurse, who, upon running the EKG immediately paged several doctors and led me straight back through the waiting room and into the patient area waving my EKG and tapping any doctor we passed on the shoulder to whisper "SVT!" in a hurried voice. I may or may not have smiled smugly as I was led past the triage nurse who demanded I wait, although I'm the first to admit that it's hard to look smug when your heart is beating faster than a marathon runner's. I like to think I pulled it off though, because I'm just an overachiever like that.

Once back in the patient area I was treated to a bevy of concerned professionals assisting me with everything from changing into my hospital gown to covering me with those annoying heart monitor things, all while asking questions like "why are you on oxygen?", "are you short of breath?", and my personal favorite "oh wow, is that cough normal for you?" To be fair, they didn't have a chart on me since they were working extremely quickly, and I was only able to explain about the whole CF/transplant thing in between other questions about the real issue: my heart. And when they asked about drug allergies and I gave them my list the nurse responded "well good, those are all antibiotics and we won't need any of those." Definitely an odd statement to the ears of a CFer.

I have to hand it to the staff of the unnamed downtown ER, because they got the SVT stopped incredibly quickly by an advanced technique known as . . . taking my blood pressure? Um, yeah, you read that correctly. They put the BP cuff on to take vitals before beginning treatment, which was going to be a quick dose of heart meds via a peripheral IV that had already been placed, and low and behold the squeezing acted as some sort of off switch and suddenly my HR bounced right back down to 110 bpm. And let me tell you, there is no better feeling than that moment. Imagine having your PICC pulled after 6 months, and then double the relief. No joke.

So, moral of the story: SVT sucks, but not as badly as CF, because after all that they decided that due to my cough they might like to keep me in house. And obviously this made no sense to me, seeing as 1) I wasn't at my CF center, 2) I had the cough pre-SVT, and 3) I had already spoken to my CF doc earlier that day and knew I was scheduled for clinic and to start IV abx in the morning. I told them as much, and luckily they agreed with the plan of attack, though I was told to "make sure [my CF doc] gets everything checked out" (as if that were ever in question anyway). And then I left, about 2 1/2 hours after arriving, making it one of the shortest ER visits of my life and, thanks to a drunk man celebrating his birthday, also one of the more entertaining.

I'm not going to drag you through all the CF stuff that went down the next day at clinic, but I will say this: I ended up on IV merrem and levaquin, with no residual symptoms from the previous nights' episode aside from a general feeling of exhaustion, and -- the most important detail -- back at home. Which kind of brings this post full circle.

So there's the back story that explains the madness. I know I should count myself lucky that my only ER visit since October has been for an unrelated and fairly benign heart issue, and I definitely do. But at the same time I'd be lying if I tried to say that this latest experience didn't shake me up a bit, because as long as I've known about my SVT I've always been able to control it myself. I would slip into it suddenly (ironically coughing and PFTs are major triggers for me, since both involve sudden, forceful movements), and then know that aside from the humiliation of "bearing down" in front of whichever poor soul happened to be closest to me at the time, I was going to emerge unscathed and not much worse for the wear within a half hour or so. And I know, of course, that one episode of uncontrolled SVT that was eventually stopped without meds anyway isn't a big deal. I know that, and I'm treating it as such. It's just that on top of everything else, I really wish I didn't have to worry about the now very real possibility that a racing heart might send me to the ER with no warning.

So you know, there's that.

But the good part about all of this is that I'm here with my Sampsonbear, currently SVT-free (a great way to be), and hoping that these IVs kick in soon and help me feel better so that I can get back to the business of more fun activities, like my mother's upcoming birthday. And in the meantime, trust me, I'm not looking for any more shortcuts.

Just Another Manic . . . Tuesday?

Seriously.

So today started off easy enough. Got up, did treatments, began negotiations with my doctor about starting IVs tmw, and headed out into the NYC Summer heat (yep, it's finally here) with my parents to look at some property. Nothing too surprising -- even the IVs seemed semi workable, and I set up a clinic appt for tmw to help decide the age-old inpatient vs. home question. Add in a French cafe for lunch and thugs were looking, if not perfect, then at least within the realm of normal.

And then along comes SVT.

Yep, that's right -- this post isn't entirely about CF. SVT is another set of letters that makes my life complicated, and today it was on in full force. For over an hour my HR was around 225 bpm, before I ended up at the nearest NYC ER. Luckily the issue was resolved pretty quickly, and I was simply made to wait for a couple hours to make sure everything was stable. I was also given strict instructions to get fully checked out tmw at clinic, which was obviously never in question.

The best part about this experience? Well, it might have been the drunk man who told the cop who brought him in that she had "a thick ass" and was "a sneaky doughnut eater." To her credit, she won best retort of the evening with the line "sir, that is One thing I definitely do NOT have, is a thick ass!" turns out she had recently qualified by time alone for the Florida marathon. Nice.

Or it might have been that my dad was the victim of street fraud, when a man on the sidewalk literally threw fried rice on him and then demanded $12 because dad had "ruined his dinner."

But I'd say the winner hands down is that, for now, I'm home with the sammybear, camped on my couch and savoring a few hours of peace before clinic tmw and almost certain admission. True, between the SVT and the CF I'm more than a little fed up with the abbreviations in my life right now, but for now I choose to focus on that one, universal truth:

There is, truly, no place like home.


- Posted using BlogPress from my iPhone

It's My Party

So have you ever backed yourself into one of those corners where you haven't done something in a while and then you want to get back to it but you want to make a return worthy of such a long absence and then you can't quite get inspired to really do something special so you just put if off even longer and longer and longer, thus perpetuating the whole cycle?

Um, yeah, me neither. Obviously.

In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later.

I spared you the "little dry run that wasn't #1" where I never left my apartment because the lungs turned out to be high-risk and I am (thankfully) not yet at that point.

And then I spared you the "little dry run that wasn't #2" where I again never left my apartment because my body decided that it would be more fun to spike fevers and play jokes like a resting heartrate of 145+ instead of going into the hospital for yet another try at a transplant.

And then I spared you the inevitable starting of IVs that came after #2, because clearly if you're so sick they're refusing to give you new lungs it's time to call in the big guns.

And then, fast forward nearly a month, and I suddenly realized that I had pretty much spared you guys right out of my life.

Because truth be told life does go on, even when CF rears its ugly head. Since April 23rd I've not only had a few missed dry runs (none of the lungs were ever used, by the way, as if that's supposed to make it any better) -- I've also had a lot of other, non-sickness stuff happen too. I've had my wonderful father come back out from Denver, I've taken my fantastic mom to mother's day brunch, and I've even been able to enjoy some of the surprisingly non-gross weather we've been having in NYC lately (today, obviously, being the major exception -- it is truly gross out there).

So are you ready to thank me yet? Yeah, I didn't really think so.

I guess the simple fact is that if anyone can handle all my CF ups and downs, it's probably you guys, because by and large you've all been there too. And that, of course, is what makes the CF community so invaluable -- like any strong relationship, we're here for each other for better or for worse, in sickness and in health (and then, more often than not, in sickness yet again). We listen to the whining, empathize with the ranting, and even muddle our way through all the Prednisone madness, all while somehow managing to be grateful for the moments of pure, well, life that show up in the middle of all that other stuff. I'm just sorry that it took me about 20 days to remember how special that is.

So this may not be the monumental, witty, and healthy return I originally envisioned, but at least it is a return. And sure, I may still be on IVs -- and I may even have added a new med to the mix just this afternoon -- but I'm still here, still waiting, still breathing, and sometimes, even despite it all, still blogging.

And between all of that, I'd say this pity party is officially over.

Bumps in the Road

Well, it's that time of the month again. Oh come on, don't be skittish -- I know a lot (most?) of you out there know exactly what I'm talking about. You know that feeling of anticipation you get a couple of days before it actually happens, the emotional roller coaster, the counting down of the days until things can be "normal" again, the sudden resurgence of your appetite, and then . . . the moment of truth when suddenly it happens and you immediately have one single, solitary thought that quite frankly cannot be ignored:

I cannot wait to take a REAL SHOWER!

Seriously, guys, what did you think I was talking about? Sheesh . . .

Yep, it's official: I'm stopping IVs today. I got the go ahead from my wonderful doctor yesterday afternoon, and as if that weren't good enough news on its own, I also get to reduce my steroid dose down to 20 mg. I'm pretty sure this means that I'm now heading into the best part of Spring with no needle in my chest, far fewer antibiotic-induced sun issues to worry about, and a drastically reduced probability of severe mood swings. Seriously, who could ask for anything more?

The less good news is that I haven't had any action lately on the transplant front. I feel terrible complaining about that, frankly -- I know I've had more chances in a shorter period of time than a lot of my friends who are, by some measurements, even more in need of lungs -- but I want to be honest with you guys and I think you can handle it. This process is strange and draining, both physically and mentally. Two weeks ago to the day I was in the hospital, about to have my third dry run in less than a 14 day span. When I came home I was hoping for a couple of days "off" to recover and regain strength (again, both mentally and physically), but I was also convinced that the next call would come again quickly. And since then I have literally jumped every time the phone rings (especially the wrong number we got at 12:30 am, which is, I should note, the third such middle of the night scare we've had since this whole process started. Good joke there, universe!). But then the couple of days passed and I was relieved, and then more days passed and I was somewhat surprised, and now a whole lot of days have passed and I am really just kind of confused. Logically I of course know that this is normal, that often quite a bit of time can lapse between workable offers of lungs, but it's still tough to be in such a state of anticipation and then have to try and resume some sort of normal, run-of-the-mill routine.

Luckily, I've had lots of distractions in the form of sunny NYC days, a few amazing nights with friends and family, and even a fairly mischievous shorkie (whose latest antics include devouring an entire "wolf size" bone in a matter of minutes -- keep in mind he is a mix of two lap dog breeds -- and then proceeding to get sick in literally every. single. room. of my apartment). I'm also lucky enough to be feeling better, and to have a rapidly healing wrist that is more or less a normal color again even after all the drama surrounding the arterial line. Sure, it's not the perfect lungs that I had hoped to be breathing with by now, but it is something, and I'll take what I can get at this point.

I guess my main goal right now is just to find peace with this path I've been walking now for the past couple of years, bumps and potholes and steep hills and all. It's amazing to me how much of an emotional journey this transplant process has been so far, because for me that aspect of it all has been at least as difficult as the physical one. And yet, at the same time, it's my physical state that demands most of my time, energy, and attention right now. So it is, as ever, a delicate balance, and one that I've been lucky enough to navigate so far with only a few minor breakdowns. More than anything I've just come to believe that it's not so much the bumps in the road that define the journey, but maybe just the experience of doing the walking.

Walk on, beautiful people.

A Few Things

1) Thank you all SO MUCH for the comments and critiques on my "positivity" blog post. This was far and away the most successful "blogger challenge" we've had yet on A Matter of Life and Breath, and I have had SUCH a good time reading everyone's very informed, honest, and interesting perspectives. For those of you who would like to read more, here's a list of some of the blogs that featured discussions on the topic (sidenote: if your blog is not on this list and you have written or plan to write on the topic, please let me know and I will add it ASAP). Also, a HUGE thanks goes out to Ronnie and his always amazing Run Sickboy Run for bringing a lot of really great people to the table on this one. You guys continue to inspire and impress me, as always.

Welcome to Joshland
I Have CF So What
A Day in the Life of a CF Mom
Jamiebug's Cepacia Lung Transplant Blog
Lovin Lane
Breathing You In

(As I mentioned, I really hope to grow this list if people have more to say -- and if you're anything like me, there is ALWAYS more to say! -- so please keep them coming, and feel free to alert me to any blogs not yet on the list. I try my hardest to keep up with the CF community blogs, and if I'm missing one I always want to know!)

2) Transplant tidbit of the day:

Did you know that cystic fibrosis is the third most common reason for lung transplants in the US? It's behind Idiopathic Pulmonary Fibrosis and Emphysema, respectively. IPF just recently (sometime in the past few years) beat out Emphysema for the #1 slot. About 1600 lung transplants were performed last year in the US.

Okay, I don't know about you, but that makes me pretty excited. Don't get me wrong, I'd prefer NO ONE ever needed a lung transplant, obviously. But consider that the first successful double lung transplant wasn't even performed until 1986, and the first successful CF lung transplant wasn't until 1988. That means that in just about 20 years we've taken this medical technology from a whimsical pipedream to a medical reality for over 1,000 patients a year suffering from end-stage pulmonary disease. Um, wow.

And beyond just the "wow factor" there's also the "someday soon" factor -- as in, maybe someday soon they'll be able to "grow" lungs to perfectly match your body using your own stem cells and DNA. Or maybe someday soon they'll be able to combine bone marrow and lung transplants to successfully wean patients off of immuno-surpressive therapy post-transplant (a reality already for certain kidney and liver transplants). Not to mention new therapies in the works for lung transplant treatment such as inhaled cyclosporin, a nebulized version of a key immuno-surpression drug that allows the medicine to go straight to the source, bypassing other organs where its affect is not needed.

I do believe that it's entirely possible to imagine a world where CF is no longer the third most common cause for lung transplants -- as CF therapies grow and reach new heights that day seems closer and closer. In the meantime, however, I can't tell you how excited these new developments in "transplantland" make me. Honestly if I'd known medical science was this interesting, I might not have been an English major (freshman year biology grade notwithstanding, of course).

3) Speaking of transplant, please keep your hearts and minds open for a lovely and inspirational young woman with CF named Emily Haager. This surfer cyster/ambassador for the CFF has lived her life encouraging CFers to be active, hopeful, and happy, and she has now been in the ICU for over a month after a sudden and unexpected health issue. She is currently on the vent and hoping to recover enough to receive a lung and kidney transplant soon, but her family is requesting that all of her beloved CF community join them in prayer for this remarkable woman. If you are not already aware of her story, please visit her blog or her carepage.

And that's it. For those of you interested: I stopped IVs this past Friday and have been LOVING the beautiful NY spring ever since. Is it a coincidence that I feel better just as the temp hits 60? Um, I think not! And my recent walks down to the Statue of Liberty/Battery Park with my puppy prove the point.

Happy spring, beautiful people.

Magic in the Making

Okay, I know I win worst blogger award...again. The fact of the matter is that there hasn't been a whole lot going on in my life lately to share, and believe me I'm not complaining. I was a little sick last week -- started back on IVs after my last post and then ended up having to add a high-dose steroid burst to help push things along -- but I feel amazing now. It's incredible what a few days, a few antibiotics, and a few (or, you know, six) prednisone every day will do for a girl! (And, on a random sidenote, is there any better feeling than being on high dose pred, having plenty of food in the house, and knowing that you're actually allowed -- um, make that encouraged -- to eat as much of it as you want? I've had some super yummy dinners these past few days, suffice it to say.)

But to be honest the truly incredible part of this weekend wasn't the steroids, or the IVs, or the ecstatic high that comes from feeling better after an infection, or even the non-stop foodfest. Nope, the really, truly, unbelievably amazing thing wasn't even going in New York, even though things were pretty great around here. As it turns out, though, everyone who's REALLY cool was hanging out not in the city, but on the mountain. Vail Mountain in Colorado, to be specific.

This past weekend was the 25th annual American Airlines Celebrity Ski for Cystic Fibrosis, which this year raised over $700,000 toward curing this disease in a single three-day event. Incredible? Absolutely. Heartwarming? Without a doubt. Magical? Well...decide for yourself:

Is it magic that a single event has been able to raise over $23 million to date for CF research, owing almost entirely to donations from individuals who return year after year -- who literally come for the fun and stay for the cause?

Is it magic that celebrities as diverse as sports heroes (Jim Lonborg, Matt Bahr, Jim Palmer, Billy Kidd), TV stars (Ian Ziering, Jim Sikking, Sandra Hess, MacKenzie Rosman, Kimberlin Brown, Wendie Malick, Grant Goodeve, Dennis Haskins), comedians (Jeff Dunham, Rosie O'Donnell), musicians (including members of Santana, Gavin DeGraw, and American Idol contestants), and so many, many more give their time and energy to support CF and raise awareness of this disease?

Is it magic that so many corporate sponsors, particularly American Airlines, have stuck with this cause since the 1980s, through good times and bad, through the discovery of the CF gene and up to now, when new drugs promise so much hope?

Most importantly, is it magic that one room full of about 1,000 people was able to raise well over half a million dollars for cystic fibrosis in the middle of a recession?

Speaking as someone who has been honored to be a part of this event almost since its conception, I'm here to tell you that it is, quite simply, magic. Every single year the people who come to this weekend blow me away with their generosity, their spirit, and their commitment to finding a cure. For over 20 years I have been with them on the ski slopes, raced along side of them on the slalom course as we also raced toward a cure, and shared in the joy, laughter, tears, and love that make this event so...well...magical.

I couldn't be there this year because I'm waiting for a little magic of my own, but I couldn't let the weekend pass without mentioning my wonderful second family and saying, once again, "thank you" for all that they do...for all of us. This is a group who took 30 seconds of silence last night to focus positive energy, prayers, and thoughts for me 2,000 miles away as I waited for new lungs -- coincidentally on the weekend when everything fell into place and I finally began to feel better.

And if that isn't magic, then I don't know what is.

Stream of Consciousness Post #2

last day of ivs and first day of freedom. hot showers, extra hours, maybe time to stop and smell the flowers.

not roses though. i'm sick of those.

having trouble accepting some of the little things that i'm supposed to take without question. i worry about stuff that doesn't seem to bother anyone else, like what i'll do when i'm suddenly not seeing my cf doctor anymore. feeling kind of like some overgrown adolescent (but then again, who doesn't, really?) because of all this change and my reaction to it. it's almost physical, or i'm sure it would be if there were energy left to have a physical reaction. pages and pages and pages of journal filled with . . . thoughts? questions? whining? i'm not even sure where the deep musings end and the complaining begins anymore. and in the end maybe that's the kind of insight illness give us: the freedom to take ourselves way too seriously.

people all around telling me to just be patient. i want to tell them that i'm the ultimate patient -- 28 years and counting. patience is a virtue, i guess, but lately it seems like patients are just a burden. and i'm so sick of all the waiting: waiting rooms, waiting lists, waiting around, waiting to exhale. i've become a cliche or a sleight of the tongue -- a sick patient who is sick of being patient.

and i know i'm one of the lucky ones.

i'm so lucky to be alive, lucky to have friends and family who support me, lucky to have healthcare, lucky to love my doctor, lucky to have lungs that can choose to work when they feel like it, lucky to have drugs to keep the monsters at bay -- my own personal three-week cootie shot. so very, very lucky to have time left to wait.

it's kind of a thin line between lucky and sucky, when you think about it.

and so tonight i'll keep my vigil, count my blessings, and fall asleep to the whoosh of the oxygen concentrator once again. and tomorrow i'll do more of the same, only different. because each dawn is a new day, and patient's is an underrated state of mind.

Get What You Need

I don't even know where to begin with getting back on track with this blog. I feel bad worrying people with lack of updates, but of course I'd imagined being able to come back with a bang -- some witty commentary on life or disease (or, even better, life WITH disease) that would leave everyone laughing, crying, or just shaking their heads at the wonder of it all. I had it all planned out in my mind, except, of course, for the actual words, which I figured would just flow like water as soon as I sat down and put pen to paper (er, finger to keyboard?). And let me just tell you all, readers, it was going to be great. I mean seriously, we're talking Pulitzer Prize for Best Writer of a CF Blog with a Not-So-Clever Pun in the Title -- they have a category for that, right?

But, to quote the Rolling Stones, "you can't always get what you want." So, instead, you're gonna get the truth.

Sorry.

See, the truth is that the past couple of weeks have been a little ridiculous. Oh wait, sorry, the real truth is that the past couple of weeks have been a LOT ridiculous. First of all because I had a CF exacerbation, as mentioned in the last post, and then because I went on IVs. Two IVs, to be exact: tobramyacin and merropenem.

If you have CF and are over the age of zero-to-very-young, most likely you've experienced antibiotics in some form, which means that you probably know that sometimes it's a toss up as to which is the lesser of two evils: the disease or the "cure." Because let's face it, a lot of the drugs we use to fight these infections are, well, evil. Brilliant, yes, but evil, and antibiotics (esp. in their hardcore, CF-dose IV form) are no exception to this rule. Hence the fact that the first few days of IVs are often likened to the feeling of, oh, say getting hit by a truck, or faceplanting into cement, or any number of other fun experiences that involve collision contact with really, really hard surfaces. In other words, IVs may be really helpful, but they're also really annoying.

I know what you're thinking: does she think I don't already know this stuff, or is she just going for the Pulitzer Prize for Best Writer of a really, really obvious CF Blog with a Not-So-Clever Pun in the Title?

The answer to that is neither (though if you know anyone offering out the latter prize, I'll be happy to accept!). See, turns out that while all IVs are annoying, they can sometimes be, well, a little more than that. And lately that's been the case more often than not for me, because unfortunately at my stage of CF and with my particular and individual presentation of this disease, I need to be on IVs pretty much more often than not. This is the arrangement that my pseudomonas/achrombacter has basically forced us into, and it seems to be working out except for one very minor detail:

The rest of my body.

Yeah, you know, the non-lung parts (also known as "all that other stuff" by us dedicated lungo-centrics). Apparently they have feelings too -- who knew? And those feelings are hurt by things like low potassium, vomiting, tachycardia, inflammation, and, well, you get the picture. When I say "hurt," by the way, I mean it literally. As I'm quickly learning, there is such a thing as serious pain associated with having severe-stage CF -- when people say that it's not BS, and they're not just whining.

It really hasn't been the greatest of weeks.

Obviously, I'm in pretty constant contact with my amazing doctor, and we're treating things as they come up. We've also switched my antibiotics around now because it seems pretty clear that at least some of the problems were stemming from a reaction to one of the drugs I was using -- it's not an allergy in the strict sense, and I think is probably just due to overuse. Like I mentioned, "all that other stuff" in my body is kind of acting on overdrive right now, because it's having to deal with the systemic effects of both chronic infection AND chronic aggressive treatment. Poor sucker doesn't stand a chance.

So it's day two of a new plan that now involves three IV antibiotics (but minus one particularly tough one for me) and some hardcore supplemental potassium. I already feel tons better, just after a full day, and I think things are definitely looking up. Which means that hopefully sometime in the near future I can get back to writing you all the more funny/entertaining/insightful posts that you want.

In the meantime, though, maybe we should all just try and get what we need.

Personal Health Update

Well, back on IVs starting tomorrow. I'm not feeling absolutely terrible, just coughy and tired and run-down. In other words, bad enough to want to feel better, and to know that I can't get there by myself. So I'm calling in some help, and hopefully sometime soon I can get back to feeling like this:


Yeah, yeah, I know. NO ONE looks at that photo and thinks "aww, doesn't that person look adorable!" It's okay, I'm used to playing second fiddle to this little guy.

Anyway, just wanted to give the brief health update in case I'm not around as much in the coming weeks. Assuming the antibiotics don't entirely kill what little creativity and/or brain power I have left I'll definitely try and make at least a few posts. In the meantime I'm going to focus on getting healthy and staying as in shape as possible until those new lungs of mine decide to join the party.

And I'm going to go take a really long, hot, needle-free shower.

On a more personal note, I have some amazing cousins who live in MN (um, sorry about the Vikings, Glo. If it's any consolation, I guess both our home teams lost today.). Last year Glo and her son Isaac climbed stairs to help find a cure for CF, and this year the whole family is getting in on the act. So much love and thanks in advance to Glo, Steve, Isaac, Sam, Lola, and Caleb. I'm sure I don't have to tell a blog full of CF readers how impressive it is that my family is willing to climb stairs to help make CF stand for "Cure Found." I mean seriously, talk about dedication! It makes me feel unbelievably loved and supported to know that even when this disease can feel so overwhelming, there are just amazing people out there standing with us in this fight. To the Beatty-Ruff family, and to anyone who has ever donated or walked or climbed or skiied for CF -- you are my personal heroes. (Even more so if you're also an organ donor!!)

Much love and goodnight, beautiful people.

Getting CF Off of Your Chest (And into Their Minds)

I am happy to report that I have now, officially, been bare-chested* for over 24 hours! That's over 1 full day of glorious, comfortable, unrestricted freedom. All I can say is: ahhhhhhh!

*By which I of course mean that my port is no longer accessed. Obviously.

And speaking of chests, there's recently been a lot of, um, "talk" about that very subject on Facebook, as I'm sure more than a few of you have noticed. Or, more specifically, there's been a lot of talk around that subject, since very few people have actually come out and posted the reason behind their constant color-coded status updates. But as word got out and the colors spread like wildfire, it seems a good number of people somehow managed to get the memo about the ultimate purpose behind the madness: breast cancer awareness. A very noble cause, for sure.

As a CFer (and also as a concerned human being), I'm always interested in awareness campaigns, particularly health-related ones. What makes an awareness initiative successful? What tactics get people's attention without just annoying them or interrupting their day? (Sidenote to the guys outside the Whole Foods on my block: I appreciate what you're doing and totally admire your dedication for standing around in the 20-degree weather all to get a few signatures on your petition. I do not, however, feel that accosting people in the freezing cold while they attempt to juggle grocery items, purses, and, in some cases, a portable O2 tank is the best approach. Sorry.) How do you spread enough information to actually raise awareness while keeping it all concise? Extra bonus points for any awareness spiel that I can listen to in its entirety without wanting to fall asleep and/or go into my kitchen for a snack.

Anyway, because I was interested (and because I have Facebook and couldn't avoid it), I have to admit that I sat up and took notice a little bit during this most recent breast cancer awareness campaign. And while I didn't directly participate -- I have friends on FB that just don't need to know my bra color, thanks -- a lot of people I love and respect did. Kudos to them. And a lot of other people I know and respect had some pretty strong reactions to it, as well. Here is a brief sampling of some of the comments I heard/read/stumbled upon throughout the week:

• A color by itself doesn't really raise awareness of anything. Nor does drawing attention to your boobs. If you want to support breast cancer awareness, do a walk or donate money or volunteer for the cause. Stop taking the lazy way out just to make yourself feel like you're doing something.
• This campaign was more about flirting than about breast cancer. We get it, girls, you have breasts. Congratulations. Thirteen-year-old boys everywhere are logging into FB in record numbers, I'm sure.
• This campaign was an awesome way to get the ball rolling. Sure, a color doesn't mean much when taken alone, but neither does a stretchy yellow bracelet. The point is to get people to ask about the status update, and by extension to talk/think/do something about breast cancer.
  
• Any breast cancer awareness campaign that makes it onto TV news stations is alright with me, even if the original idea wasn't really my thing. Anything is better than nothing, after all.
  
• And this really interesting personal-blog post by my cyster, Talana, (which is actually a CFer's reaction to a cancer patient's reaction to the campaign, if that makes any sense at all).

I tend to fall into the "anything is better than nothing" camp on this particular issue. As long as an awareness campaign isn't hurting anyone, then I really don't think it has to be perfect to still be pretty darn good. But ultimately, I think the best awareness grows out of personal experience: when people who actually have a disease are willing to speak up about it, or wear our chemo hair/scars/oxygen tubing in public, or even just be honest when people ask what's wrong or why we're coughing (because let's be honest: we don't really "just have asthma," no matter how convenient it is to just say that sometimes).

I'm not saying we all have to be in your face CF super-promoters 100% of the time, obviously. And I'm definitely not saying we should all be out on freezing street corners chasing after tired grocery shoppers. In fact, I guess all I'm really saying is that we're gonna cough anyway, so we might as well spend the 30 seconds it takes to tell people what's up. And if they don't want to listen, well, we could always try flashing custom-made bras with www.cff.org written across the chest. You know, just to get people talking.

You Asked, I Listened . . .

By popular demand:

Just So You Know . . . (Leah's Blog)

I personally feel this blog needs no introduction, but seeing as I've been lucky enough to "know" Leah for a little while now, I'll give a quick one anyway. Leah is a 28 year old CFer and mother to a stunningly handsome little man. I first began reading her blog as a way to keep up with her recovery after transplant, but I've since been drawn in even further by the cool writing, great pictures, and undeniable flair that she and her husband bring to the table. Enjoy!

(PS: Be sure to check out the entry from a week or so ago where Seth and Leah are actually HOLDING her old CF lungs. Too cool, and makes me totally jealous I'm not at Stanford, which I believe is one of the few centers that offers a chance to see your old organs.)

Quick personal health update for those interested: I am FINALLY finishing up IVs in a few days after a little over 4 weeks and three different antibiotic cocktails. Whew. But seriously, is there any better than feeling than when you turn the corner after an infection? I feel like skipping through the streets (or, you know, I would if it were over 30 degree outside!) and celebrating! So maybe I'll just do the latter, preferably someplace warm and cozy . . . with Sampson . . .and friends . . . and NO silly IV needle!