Monday, January 27, 2014

Leaky

Hi there, lovely readers.

I've had a lot of you ask via the blog or FB or messages how I'm feeling lately, and I guess the best answer I can give you right now is that I'm feeling a little, well…

I'm feeling a little leaky.

As of right now, I'm still in the hospital with two chest tubes: one "regular" tube that has been in since my transplant and one "pigtail" tube that was placed last week as a way to combat something called a "pleural effusion" (layman's translation: fluid in chest cavity around the lungs). Both tubes have been working on draining fluid, and the regular tube has also been hooked up to suction (exactly what it sounds like -- just a tube that sucks out air) to remove subcutaneous air from under my skin. That would be air that leaked in through -- you guessed it -- the chest tube. Confused yet? Good, because I am too.

Basically, the story is that I'm leaking some fluid, and I'm leaking some air, and both of these things need to be resolved before I can really think about leaving, which is way more fun than leaking any day. All of these things have also left me feeling a little "leaky" emotionally, meaning I've just been a little drained, a little defeated, a little not-so-Piper-like lately. And that just means that this 30+ day hospital stay, as necessary and wonderful as is it is, is getting a little old. There, I said it. And you know what? I'm not even sorry.

In fact, I even told my docs as much the other day, pointing out that my mental state recently has been a little harder to control in terms of keeping my head in the game and staying positive. Don't get me wrong, I'm not flying off the handle (yet). I'm not depressed (yet) or overly anxious (yet), but I believe in being proactive and I believe there's more to life with illness than pretending this stuff is all sunshine and rainbows all of the time. So I asked my team what we could do to make some progress over here, and they came up with a reasonable, medically appropriate answer.

Right now, we're conducting an experiment. We plugged one of the chest tubs 24 hours ago, and so far the fluid accumulation and air leaks have not gotten worse with that tube out of commission. Should that trend continue for another 24 hours -- a full 48 in total -- then we may just pull that tube and see what happens with only one tube left. It's a good experiment because sometimes the body just needs a little urging to start doing its job and picking up the slack from the leaky fluid and air, and it looks like that might even be true in my case. Believe me, all fingers are crossed and all our thoughts are dry and air-free over here.

So that's the latest and greatest from over here in our tubular, leaky little world. My doctors have also "prescribed" lots of walking and some time outdoors as often as possible, for which the North Carolina weather is a blessed help right now. I'm happy that the team is taking my restlessness seriously while continuing to balance my physical health needs -- it shows concern for me as their patient on both human and clinical levels. All in all, that's probably the best indicator I have that things are looking less leaky around here -- for the tubes and the tears.

And here's to all of it drying up!

Thursday, January 23, 2014

On Looking Forward, Looking Back

**Some reader discretion advised -- tough CF topics ahead.**

It happened about a week ago.

I was just sitting here in my snug little hospital room, minding my own business and catching up on some emails when all of the sudden my eyes fell upon a message addressed to this blog's mailbox. I reached up excitedly to click open the email (have I told you all lately how much I love hearing from you? Seriously.) and there it was: the question I knew was coming. The one I was never really sure how I would answer, but that I knew I would have to eventually -- as much for myself as for anyone else, really.

Hey Piper, it's [name withheld] and I had a lung transplant several years ago. My doctors tell me now that I am most likely in chronic rejection. We are working to stop the progression of this terrible disease, but if not I may be forced to consider retransplant. I always said I didn't want another set of lungs; now I'm not so sure. How did you make this decision, and what was the hardest part of it for you? Sorry if this is too personal. I just really need some advice on the issue. Thanks.

Nope, thank you.

As soon as I read these words I flashed back to the period just after my first transplant, during the long (and somewhat complicated) "recovery" period. I was excited to finally be doing well with my new lungs, by which I mean still on IVs but breathing deeply and generally beginning to feel like Piper again. Best of all, I was feeling like Piper the Sequel -- still me, but with the added ability to do amazing things like, say, walk down the block without coughing or even (gasp!) jog a few feet. Pretty impressive, if I do say so myself.

So anyway, I was feeling pretty good, but I was still fresh off the table in a sense, and I distinctly remember telling my parents that I didn't think a second transplant would ever really be in the cards for me. Why not, asked my astonished and somewhat shell-shocked mother (note to self: right after transplant surgery is probably not the best time to bring up a second transplant surgery, especially to the mother of the 28-year-old recipient). And my answer was pretty simple, maybe even brave.

I calmly explained that I only wanted to die twice. I had been to the edge and back with my first transplant, literally experiencing the pain and torment of watching my entire body shut down one small part at a time. Although I spent most of my time focused on the positive aspects of what I could still do even with my very limited lung function, new issues, seemingly small but adding up to much more in their totality, crept up almost daily to remind me of how sick I truly was. Nightly baths eased some of the pain, but they could hardly wash off the truth that my body, despite my strong spirit and my will to live, was dying slowly and very painfully. Suffocation is a terrible fate to wish upon anyone, as is the advanced infections that so often accompany end-stage CF. And as positive as I am that we will someday beat this disease, the truth of the matter is that people -- young people, vibrant people, strong people -- still fall prey to its evil ways every single day.

Thankfully, and because of the gift of my first Beautiful Stranger, Donor Bob, I wasn't one of them. But I came close. And from that time on I decided that I would only die twice -- the second time would be my final goodbye to this phase of existence. I was not yet 30, but I was at peace with that decision for myself.

Fast forward 3 years, and things were…different.

When I decided to pursue a second transplant, it was largely because my life, in the time between my first surgery and my diagnosis of chronic rejection, had changed. For one thing, I was in a new relationship, and I knew I wanted to stick around to see where this one went. For another, I was increasingly comfortable in my own skin as an adult and felt more at ease with the idea that I was not in control of every little aspect of my health, nor did I necessarily need to be. The idea of dying didn't scare me as much as it once had. And, of course, I felt the very natural, very human resistance to the notion of "giving up." A part of me, I acknowledged, had been training my entire life to fight against illness, and it wasn't about to stop now. And so I began the process of trying to halt my chronic rejection, but also began mentally and physically preparing for the day when I, too, might have to face the choice to relist, again, for the precious Gift of Life. And I knew that, should that time come, I would ask God once again to bless me with new lungs, and then I would work my butt off for them, even if it mean dying a whole other time over. The rest, I knew, was somewhat out of my personal control.

Look, guys, transplant: it's not for wimps. Neither is life with CF, for that matter. I've honestly never known a group of patients who, for their entire lives, are asked the way we are to endure pokings and proddings, hospitalizations and "procedures", invasions of privacy and personal space, treatments and medications and daily battles just to keep all the rest of it at bay -- and that's just for some of our "healthier" patients. But at the end of the day, most of us don't have much of choice besides being strong. What others call "inspirational" isn't even an option for us; we act that way because we have no other choice if we want to survive.

And so I took that second leap of faith. And miracle of miracles, after a brutal battle, it paid off. I can't even bring myself to write yet about the road I took to get to my second transplant, but I can tell you this: in retrospect, it was worth it, every step.

When it comes to life -- or death -- with this disease, there are no "right" answers to the tough questions like "should I get a second transplant?" What there are, however, are answers that are "right" for me, or for you, or for anyone else who might be struggling with the "what ifs" and the "what fors" of decisions most people will never even have to make in their lives. It's not an easy position to be in, and my heart goes out to all of you in that same boat for whatever choice might lie ahead, but my answer is always going to be the same: it doesn't matter what I chose or why, because this time, guys, it's all up to you.

And I wish you nothing but peace, love, and light along your journey.

Tuesday, January 21, 2014

On Waiting

Well hello again, beautiful people.

So as most of you probably know by now, I received a very special gift this Christmas -- December 25, 2013 -- in the form of sparkling new lungs from my newest partner in crime, Donor Nick. And despite my declaration at age 11 that I would never ever love a Christmas gift as much as I loved my new pink Huffy bicycle, I'm pretty sure this one takes the cake for the best.Christmas.present.EVER. To be honest all I really remember is the vague sound of the telephone ringing, the bumps in the early morning darkness as my boyfriend sprang up to get it, the thumbs up he gave me from the bedroom doorway, and then an overwhelming sense of peace that this was it, this was right, this was going to happen. True to his saintly name, my newest donor had arrived just in the "nick" of time.

He arrived in the nick of time because I was dying, literally. I had been placed on bipap for high CO2 and plummeting O2 saturations, but even that was barely working anymore, and I knew the next step was a ventilator. I was struggling just to keep my head above water in rehab, much less gain any real ground toward my strength or weight goals pre-tx, and my family had taken to staying up in shifts throughout the night to watch me breathe -- a brutal exercise in unconditional, heartbreaking love that I think any CF or lung disease family can relate to on some level or another. I knew deep down that there wasn't much time left, and they knew with me, and yet we all still hoped, wished, and prayed for a miracle.

And then it happened.

We had been teasing and joking about new lungs for Christmas for a couple of weeks -- who wouldn't have? It was the perfect image -- Santa packing a living, breathing set into his bag and stuffing them down the hospital's chimney on that not-so-white Carolina Christmas morning. And yet the reality is that it wasn't a jolly fat man from the North Pole who saved my life that day. It was a beautiful stranger and his amazing family who suffered the ultimate tragedy of losing a loved one and a family member on that holiest of holidays, on the day of birth and celebration, and who chose to turn around and change that grief into hope, into love, into a gift from one human to another that is beyond all measure -- the Gift of Life. It is to them, not to some dude in a red suit, that I will always be thankful. It is to the miracle of organ donation, that brings life from death and rebirth out of worry and tears and so much hardship, that I will forever owe my life. And I promise to use this gift as it was offered: in faith, in compassion for others, and most of all in love. I promise to celebrate the life inside of me every single day.

Which, so far, means a whole lot of hospital celebrations. I'm coming up on week 4 in here, which is not exactly rare for retransplants as they are "messier" jobs than the first. That seems to be the case with me as the only thing keeping me here is a single chest tube which 1) refuses to stop draining fluid, and 2) is now also necessary to drain some small air leaks that have caused what is known as "subcutaneous air pockets" underneath my skin and primarily in my face. Yes, it makes me look funny (think "Fat Albert" on steroids), but at least the chest tube seems o be doing its job in bringing it down.

So now, ironically, I wait. I received my gift, and I'm happy to say that everything went wonderfully during the surgery (though they had to cut poor Donor Bob -- gone but never forgotten -- out of my chest piece by piece given the sorry state of my lungs this time around). Donor Nick looks great and my first bronchi came back completely clear of infection and rejection, indicating that he is happy and healthy in his new home. For all of that I am grateful. For the tubes and suction and the solutions to the "bumps in the road" both big and small, I am grateful (if sometimes a little impatient). And for the chance to experience all of this -- for the moments, for the lifetime, for the breath -- I am forever indebted and forever grateful beyond measure.

And that, beautiful people, is worth the wait.

Monday, January 13, 2014

An Introduction

Dear Readers, Followers, Lurkers, Commentors, Visitors, and All-Around Beautiful People:

First of all, on behalf of Piper, Sampson Bear the Dog, Piper's Family, and everyone else who makes this blog possible, we want to apologize for the recent lack of postings. Please rest assured that, despite the gap, our current mission remains the same as always: to bring you the most up-to-date anecdotes, randomly charming musings, and (strangest of all) true stories of life with CF and lung transplant -- and everything in between! Please also know that the vote is in on blogs with the most amazing, loyal, and forgiving reader base and we are delighted to announce that you all have won the prize, hands down. Congratulations from Piper and all of us!

Unfortunately, as we begin this new year of blogging and being, we do so without the help of one of our crucial team members thus far. As some of you may know, our beloved Donor Bob, whose breath and spirit proved invaluable not just to this blog but to all the experiences, moments, and people behind it, has moved on to greener pastures. Donor Bob graced us with his presence for 3 1/2 years, during which time he enabled Piper to do "Amazing Things" such as return to school for a master's degree, watch some of her closest friends begin families, celebrate her parents' 40th anniversary, turn 30, and meet the love of her life. Now if that's not a gentleman, I don't know what is. Sadly, Donor Bob fell ill early in 2013 and simply never recovered, despite aggressive treatment, to the point where we finally said our goodbyes on Christmas, December 25, 2013. May we always remember him with love and gratitude.

And now for our happy news: Welcome Donor Nick!

We are excited to welcome Donor Nick to the team after his miraculous and perfectly timed entrance into our lives this Christmas Day. (Piper's side note: I actually went into surgery on Christmas around 6:30pm and got out about 12:30am on the 26th, which also happened to be my parents' 43rd wedding anniversary.) Donor Nick has bestowed upon our girl two beautiful new lungs that apparently were so large they had to be "stuffed" in there like a couple of Christmas hams. We'll take it. Donor Nick, thank you for joining our wonderful, chaotic, crazy, beautiful lives. We are, as we remain with your predecessor, eternally grateful for the gift of Life you brought us through your Christmas Day miracle.

It goes without saying that we are blessed beyond measure by this new addition -- and it shows. Piper is recovering well, though still in the hospital in a pulmonary "step down" unit that affords more personalized nursing care. The doctors say the only thing keeping her inpatient are the chest tubes, which are taking a longer time to "dry up" than they did after her first surgery. Much of this is par for the course on second transplants, which tend to be messier business because of scar tissue and other complications. Thankfully our faith in the medical team never waivers -- we know we are getting some of the best care in the world and feel very much at peace with where we are today. Although Piper reports that she would really like to be reunited with that shaggy little mutt of hers one of these days. In good time, Piper. In good time.

So there you have it, friends and loved ones: all the news that's fit to print. And As we gear up for a big year in 2014, please know that we would be honored and delighted if you would continue to share the ride.

Sincerely,

Piper, Sampson, and All of Us


Tuesday, October 29, 2013

'Tis the Season

I originally posted this as a status update on my personal Facebook page as a way to respectfully chime in to one of my favorite seasonal traditions: the great flu shot debate. Two hours, 22 shares, and 16 comments later, I realized this was an issue that people need to be talking about, and so I decided to take it to some of the coolest and smartest folks I know -- all of you. Please be aware, of course, that this is my own highly personal perspective as a person, as a CFer, as a transplant recipient, and as a a strong believer in community health. Because what we do matters. I promise.

Every year around this time I watch for the first flurries. I sit in wait for those swirling flakes of debate that go hand in hand with the coldest season of the year and the inevitable question that, sooner or later, we all have to face. Should I get a flu shot?

Honestly, I can't answer that question for you. No one can, except maybe your doctor or your child's school depending on its vaccination rules. I can't tell you whether it's worth the so-called risks of the shot itself, or playing the bad guy and bundling your kids off to the doctor again. I haven't read every piece of medical literature out there on the subject, nor could I even if I made it my full-time job. I'm not here to discuss conspiracies or WHO statistics or the devastating spread of preventable disease in countries where vaccinations are not available. I'm not here to police your decision at all, in fact. I'm here to share mine.

I don't have a choice in the whole vaccine thing because when I got my lung transplant they made me sign a paper promising that I would stay current on all vaccines for the rest of my life (except live vaccines, which are dangerous for me). So every year, while other folks debate, I simply trudge out to my doctor's office, endure the poke, and keep my promise to myself, my healthcare team, and my donor. That said, even my doc admits that vaccines might not work on me very well simply because I don't have much of an immune system to react to the dead virus and produce the necessary antibodies. Because of this, everyone who lives with me or shares close contact with me on a regular basis is also required to get their shot to help keep me (and my precious lungs) safe. That means my boyfriend is getting his shot for pretty much the first time ever this year. Bear in mind that he's not so super into needles, that one, but he's doing it for me anyway. Love is never having to say "I'm sorry my genetic disease requires me to purposefully destroy my immune system so that you have to get a shot."

Here's the point, though: if he didn't know me, he would most likely be just fine without the flu shot. True, over 40% of the children who died of the flu in recent years were apparently not high risk patients, but even so -- most normal, healthy folks will be just fine, even if they do get the virus. But the fact is that he does know me, and chances are good that you, too, know someone who is deathly afraid of catching the flu for a really good reason. Chances are you know someone, even if you aren't aware of it, who has a lower immune system capability, or an underlying disease, or is elderly, or is pregnant, or . . . well, the list is pretty extensive, actually. These people are afraid of the flu because, to us, this virus is way more than an inconvenience or a few missed days at the office. And we care about the flu shot -- yes, even your choice to get the flu shot -- not because we want your arm to be sore or because we get a kick out of watching healthy folks facing their fear of needles. We care about it because this issue, for us, is about more than your right to build up your 7-year-old's immune system "the natural way." It's about our right to go outside of our houses between the months of October-April without risking our very lives because that 7-year-old (or his parent, classmate, teacher, or someone else who caught the flu after him) is in front of us in the grocery line.

Vaccination is a personal choice, right? But spreading germs once you catch them is not. Even with great hygiene and the best of intentions, those pesky little things have a way of making themselves at home on classmates, coworkers, friends, loved ones, public surfaces, and all sorts of other shared spaces. And maybe that's not a huge problem for you or for your child. In fact, maybe it's a risk you are willing, able, and even happy to take. That's fair. But before we make these so-called personal choices about preventative healthcare, maybe we should all look to our right and look to our left and then ask ourselves honestly: are we truly willing to risk the health of our neighbors (friends, family, strangers on the street) for the sake of this one "individual" decision?

Because that's the kicker with community health, guys. It's never as personal as we think it is.

So if you choose not to get your flu shot this year, please also consider staying home if you or a close family member is ill. Please consider the fact that most people shed virus for at least a day before they even show symptoms of a virus like influenza, and please consider educating your children about proper hygiene habits like coughing into their upper arm, washing their hands frequently, and sneezing into a tissue whenever possible. Most of all, please consider how your choices may impact the people around you and their overall health and well being as well, and once you've considered all of that, please make your personal, individual choices wisely.

Our health depends on it.

Thursday, October 24, 2013

The S Word

I believe in the power of words.

To me -- as a lawyer, as a blogger, as a speaker, certainly as an empowered patient, and even just as a person -- words have always been important. How we choose to express ourselves colors our perceptions and those of everyone around us, just as the words others choose impact our own understandings. As a kid I remember hearing that the Inuit and other American Eskimo tribes have something like 50 words for "snow" (FYI: read this article from The Washington Post if you're interested in learning a little more) and being fascinated by the idea. Mostly I remember thinking that, as a Colorado girl, I should probably have at least 25 of my own words for snow, and also that clearly this language thing was more complex than I thought it was. More specifically, I was intrigued by the notion of having multiple words to describe a single phenomenon, and the way that choosing one word over another might change the whole darn thing. And then I went back to coloring or multiplication tables or whatever it was that I happened to be doing at that time. Because, you know, I was a kid.

Fast forward to last week somewhere in a major research hospital in the Southern United States.

I was sitting in yet another waiting room awaiting yet another exam for yet another lung transplant and feeling an extreme sense of been there, done that syndrome. After all, I have been "here" (as in the physical state of end-stage lung disease) before, and I have done that insofar as I've already come through this entire process once. I was wearing what might as well have been the same hospital gown and lugging what might as well have been the same O2 tank and sitting in what might as well have been the same uncomfortable chair thinking what might as well have been the same slightly scattered thoughts while trying to push aside what might as well have been the same ugly fears and series of "what ifs..." from my brain. In short, I was frustrated and I was tired and I was ready for the test to be done, so I decided to distract myself by looking through my "transplant folder" at some of test summaries and other medical documents I had either brought with me for  or accumulated during the evaluation. I opened it up, grabbed one at random, and began reading the "notes" section.

"Ms. Beatty is a 31-year-old female who suffers from cystic fibrosis and advanced rejection of transplanted lung..."

And that's as far as I got.

I've seen the words "suffers from cystic fibrosis" so many times that the phrase has almost lost its meaning. Almost. But seeing it there, in black and white on a piece of paper by a very well meaning physician not-so-almost took my (very limited) breath away. Sitting there in that waiting room in the scratchy gown and the uncomfortable chair, I sucked my oxygen and gave a furtive glance around me at the nurses, doctors, other patients, and support people nearby. Then I asked myself honestly: were we suffering? Or, more to the point, I guess, was I suffering? One minute ago I had just been "bored" and maybe "tired" or "annoyed." Was I now supposed to suffer on top of all that?

Did they get it wrong? Or does the medical community just have 50 different words for snow...er, make that "suffering"?

Look, cystic fibrosis isn't pretty. Chronic rejection isn't pretty either. Neither of them are afflictions I would wish on, well, frankly I wouldn't wish them on my worst enemy to tell you the truth. Most people I know with CF feel this way, even those who claim it as a blessing in their lives because they feel it's made them stronger, more grateful, or whatever other moral high ground illness might give us a right to claim. I don't disagree with their perspective (who am I to do so anyway?), but for me having cystic fibrosis has never been about the blessing or the curse. It's something I have, plain and simple. It's something I fight. It's something I'd like to see eradicated and cured altogether so that no one else ever has to go through it, because I don't believe you need to experience CF to have a happy life. And I believe that given the choice, most of us would choose not to have it in our lives or in our children's lives. Because it is painful, it is frustrating, it is hard, and it can be deadly. It can be just about the most despicable little monster on the planet.

So does that mean I suffer?

Sitting there in that waiting room, I had the overwhelming urge to grab my pen, cross out that line, and rewrite the sentence to read "Ms. Beatty struggles with cystic fibrosis and advanced rejection of the transplanted lung." Because you know what? I do struggle with it. Every single day. I struggle to breathe now, but even before that I struggled to find time to do all my treatments with CF lungs, to find balance between life and an illness that just wouldn't go away. Sometimes I struggle with my doctors, or with myself, or with my care-partners (my preferred word for support people), or I struggle to deal with some of the side effects from medications. Sometimes I just struggle to keep it together in a crowded waiting room, and hey, who hasn't been there before? I struggle against cystic fibrosis every time I go out with the mission to raise money for a cure. I struggle against it when I watch other people fighting this fight, or watch my family watch me. I struggle against it because I don't want to surrender and I refuse to suffer. So, yes, I struggle sometimes with cystic fibrosis/lung disease, and you know what? I'm okay with admitting that.

Cystic fibrosis is not optional. I was born with it, I have it, and I have to figure out how to live with it every day. In a similar vein, I know that "rejection of the transplanted lung" in my case was not anything that I (or my body) did "wrong." Because believe me, if there were some huge, looming mistake that I made I would have found it by now -- God knows I've been searching. So I also know that being where I am right now was not optional either. Neither of these were choices. But I know that, for me at least, and at this stage of my disease, suffering would be.

Maybe that's just the linguistics nerd in me again. Maybe it's because no matter how much I struggle with CF or chronic rejection or SVT or any of the other ridiculous health issues that seem to rear their ugly heads at inopportune moments, I still consider the rest of my life to be pretty effing amazing when you really stop and think about it. Maybe it's because I have a multitude of different words to describe how people deal with the pains and realities of chronic illness, and to me suffering seems like a last resort. Maybe that's because I've been lucky -- and believe me, don't I know it. Maybe it's just because I'm too darn stubborn to admit I'm wrong. And maybe, just maybe, that little bit of stubbornness is enough to keep me alive.

Or maybe it's all just semantics anyway. But I, for one, still struggle with it.

Sunday, October 13, 2013

Just Breathe

A few years ago I had a minor, unsedated procedure to remove an infected port-a-cath. At the time I remember lying on an elevated platform in my vascular surgeon's office with a bunch of sterile dressing draped over my head and neck area, with a bunch of men hunched over my pretty much naked chest. And yes, it was every bit as much fun as that sounds. But I digress.

At some point during the process, my surgeon needed to numb up the area enough to cut my skin and vein open and pull the evil cath-of-death out. This involved sticking me repeatedly with lidocaine, in my neck and chest, while I lay there sick, semi-undressed, basically blind, and breathing through sterile sheeting. And because he was a good surgeon and recognized that I might not be entirely comfortable with the situation as it was, he instructed me carefully that the numbing step was about to happen, that it would hurt, and that he wanted me to try and breathe through the discomfort -- physical and mental -- because it would only be temporary and the result was important. Breathe through it, he said. Interesting choice of words, doc.

Breathe through it. 

Later on, when my lungs failed, a pulmonary rehab trainer told me that during times or activities of high stress, most people tend to breathe erratically. Or, to put it another way, to stop breathing altogether. When lifting heavy objects, for example, the natural tendency is often to hold our breath until the burden is removed. When faced with a scary situation we breathe in rapidly -- and then we hold it until we believe the danger has passed. Heck, according to my trainer many of us go so far as to exhale completely before attempting even unremarkable tasks like climbing a staircase, which means we do so without the full use of our breath. And she must be right, because to this day I can remember hearing my mom's Jazzercize instructor crying out "don't forget to BREATHE" to an entire class full of women with tightly wound perms and colored leotards. In fact, to hear how often we as humans subconsciously choose to stop or just stunt our breathing, one might get the ridiculous idea that oxygen is an optional life source.

Guys, trust me on this one: it's not.

So where does that leave me now? Well, recently my lung function has taken a bit of a nosedive, leaving me with a whopping 22% FEV1 (the amount of air one can exhale in one second). And this is, sadly, what we might call NOT a great number. All of which means that after much consideration, time, and effort on the part of my amazing team(s) of doctors and specialists, I have decided to actively pursue a second lung transplant. At this point in the game with chronic rejection, it's become clear to all of us that retransplant is the next step if I am going to try for that long and heathy life I truly believe is possible. My days with Donor Bob, amazing as they have been, are coming to an end one way or another.

And I will breathe through it.

I will breathe through the discomfort and remind myself that this is only temporary. All of it. I will breathe into the hard stuff, remember to breathe when it gets scary, remember that there is no box so heavy that it can't be moved. I will breathe, and I will not forget. And I will take that 22% and use it for all it's worth -- I promise you that, beautiful people -- because that choice is and will always be mine alone. Not CF's, not chronic rejection, not any of the other little monsters hanging out in the shadows. I will breathe, because that is MY breath.

And there will be discomfort.

I hate this disease more than anything for what it does to my family. I hate having to go through this again because I feel like the rest of my body is so beholden to this one very temperamental part. And I hate watching as life gets smaller and smaller traveling down the medical rabbit hole -- again. I want my loved ones and myself to have more time to enjoy the things that make up our lives when we're not overwhelmed with this "sick stuff", want to go back to the days when my health was A factor in my day-to-day plans and not THE factor. I want all of you to be able to read this blog and smile and know I'm okay (I AM okay, by the way). But then again, I know the reality is that this discomfort, is only temporary -- and the result is important.

So I'm asking my loved ones, my family, and all of you to do me one huge favor:

Please breathe through it with me.

And together, we can blow them all away.