'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.

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.

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.