Monday, October 22, 2012

Hey CF, The 1980s Called...

They want their diagnosis back.

For those of you who don't know yet, I'm 30 (nearly 31!) and I was diagnosed with CF at six weeks old -- way back in 1981. It's a diagnosis that I share with about 29,999 other people in this country, people who are rich and poor, young and middle-aged (yay!), religious and atheist and everywhere in between, and people who are conservative and liberal alike. CF doesn't discriminate and it doesn't pick sides. That means when it comes to fighting this deadly disease, we're kind of stuck with a mixed bag of people -- heck, even our awesome Congressional CF Caucus is a bipartisan effort. And you know what? I wouldn't have it any other way.

Having CF and living with it for 30 years does not in ANY way, shape, or form make me a spokesperson for the CF community. That said, the experience of doing so -- especially when combined with the "fun" of attending law school -- has, I think, made me pretty aware of some of the problems with the healthcare system in this country. The views in this and every blogpost authored by me are mine and mine alone. They are my OPINIONS. And before I even begin this discussion, let me say that I know for a fact that Gov. Romney is a friend to the CF community. Don't believe it? Feel free to check out this link, just as an example. Now, enough with the disclaimers already.

If you watched the debate, you may have seen Gov. Romney's statement that we don't "absolutely need" healthcare reform (slightly out of context there -- what I believe he meant was that we don't "need" all aspects of the recently passed health care bill). You might also have heard him say that there are states doing a fabulous job of administering medicaid, states like, oh, I don't know...Arizona?

And that's when I literally spit water into my lap.

I don't want this blog to be political, but I do want it to be honest. And my honest opinion, folks, is that calling out Arizona for successful management of medicaid for disabled and indigent citizens is, to put it mildly: a load. of. crap. There, I said.

In October of 2010, Arizona decided to stop funding lung transplants for ANY of the approximately 100 people on their medicaid rolls who desperately needed them (see, e.g., this article). None. Zero. Nada. Among the affected people was at least one young woman with cystic fibrosis who had, in fact, worked as a basketball coach prior to her slide into lung failure. The 27-year-old woman, Tiffany, was waiting on lungs for end-stage CF when the change took hold, cutting off her ability to pay for the admittedly pricey surgery. You can read her story here because she was brave enough to share it.

The state of Arizona justified this change by saying lung transplant was too risky; basically, the survival rate as compared to those who did not get the surgery was too low to justify the cost. (They also denied liver transplant coverage for Hep C patients because of a claim that the disease had a 100% recurrence rate.) Doctors and later lawmakers claimed the state was acting on faulty, outdated information. Regardless, the situation continued unchecked for several months, despite the controversy. Several months, guys. And as someone who has been through the lung transplant process, I can tell you that each day on the list feels like a year even when you know you CAN afford the surgery. Not cool, AZ. Not cool.

For the record, both lawmakers and lay people alike from both parties stepped up to rectify the situation, and funding was restored for transplant in April of 2011. Ms. Tate did receive her lungs.

Look, I get that Medicare and Medicaid are tough subjects, and often sore spots amongst the CF crowd. I get it because I've lived it. I've actually been personally struggling to come to grips with the fact that Medicare refuses to cover my admittedly necessary and LIFE-SAVING transplant drugs just because I used private insurance to cover my transplant, and thus saved the state hundreds of thousands of dollars. That doesn't make sense to me, either. But then again, that policy isn't being held out to the world as a "good example" of healthcare policy genius. The fact that Arizona's handling of Medicaid is...well, that just infuriates me, regardless of party.

You don't have to love the healthcare bill just because you have CF, any more than you have to vote for Romney just because you love dressage horses (as a personal aside: I fit into both categories). What I would ask is this: that as responsible people, citizens, and lifelong users of the healthcare system, that we do OUR OWN research into the issues that most affect our daily lives. Pay attention to what states are getting it "right" (whatever that means to you) and what policies you want to see put into action. It's almost impossible to know your candidate's position on every little issue out there in the political universe right now, but you should always know his/her position on the ones that matter most to you personally. And whether it's bayonets or lung transplant funding, never settle for less than the full story.

Happy voting, y'all.

Thursday, October 18, 2012

If You're Feeling Sinister

There are lots of words that most post-transplant patients aren't very fond of hearing. "Prednisone", for example, or "infection", "bronch", "flu-season" (one word for the purposes of being super scary), "IVs", and my personal least favorite: "hospital." But all of those words, scary as they may seem, are downright joyful compared to the one word that all organ transplant patients dread beyond all others. Yep, you guessed it:


Y'all might remember that a few weeks ago I was hospitalized (bad word #1) for IVs (bad word #2) because of a bronch (bad word #3) that had shown some sinus infection (bad word #4) and some prednisone-resistant (REALLY bad word #5) rejection (horrid, terrible word above all other bad words). As I explained then, the plan was to hit the remaining rejection with the big guns and wipe it all out in one very effective -- if somewhat uncomfortable -- shot so that life could continue more or less as normal for Donor Bob and me. So I checked into the hospital, I got the IV treatment, I took antibiotics for the infection, took the rabbit serum for the rejection, and then was released back on the world with the understanding that we would repeat the bronch in a couple of weeks to ensure that the rejection had indeed been, well, rejected. 

I had my repeat bronch last Thursday and honestly, it went fine. My lungs, according to my doctor, looked pretty good. My infection seems to have cleared up at least enough for me to be breathing a little more through my nose, and my O2 saturations have climbed back into the decent, if not terribly awesome range. As far as I was concerned, all systems were go and the results were bound to be good. Sadly, this is why I choose a career in law rather than fortune telling. Because my bronch results apparently are still showing some mild rejection, even after steroids and rATG, and that, in a word, is just plain uncool.

So what do you do when the big guns fail? Well, apparently you go nuclear. This is all starting to sound a little sinister to me.

My doctor and I have discussed our options and are leaning toward a process known as "photopheresis." Now JDs might be know-it-alls, but most of us are in NO way MDs, so bear with me on this explanation. My understanding is that photopheresis is a process through which blood is taken out of the body, separated into red and white blood cells, and then the WBCs are treated under UV light to cause some sort of small mutation. The mutation, I believe, then somehow acts to inhibit the body from producing or using t-cells to attack the lungs. That's the complicated part that I don't understand. What I do understand, though, is that this treatment involves removing blood from my body, treating it, and returning it, and that I will need to undergo those treatments for a while, at least. I'm currently working in true Piper style to make sure that this process is 1) medically effective (this part comes from being engaged in the process and trusting my docs) and 2) personally acceptable (this part comes from being engaged in the process and trusting myself). I'm hopeful that between the awesomeness of my very astute and capable medical team, the awesomeness of my wonderful family and friends, and the awesomeness of me that I can actually drag out every once in a while, that this is going to end in one truly awesome result.

In the meantime, a part of me can't resist the fun timing of being hooked up to a vampire machine just in time for halloween. (Well, okay, I could totally resist it if they gave me the option, but since they haven't I'm just gonna run with it.) I've come to the hard-won conclusion that this treatment might be all about sucking my blood, but it is in no way going to suck my spirit or my life -- at least not so far as I can help it. My mission is to trick this rejection into giving up, while treating myself to as much normalcy as possible, and if that means I have to fake it 'til I make it for a little while at the outset, well, I've always been good at costumes. And as for you, CF, I have just four little words of advice this Halloween season:

Be afraid, little monster.

Because I'm not.

Wednesday, October 17, 2012

Show and Tell: The School Debate

Every time CF makes national headlines (much less an appearance on The Today Show!) everyone in the community seems to sit up and take notice. Most of the time this is an exciting moment: there are articles on new medical breakthroughs, spotlights on outstanding or inspirational community members, and the occasional awareness piece that makes us all super grateful at the amazing people we have in our corner.

And then, sometimes, it's not.

Today several news sources featured a version of this article, about a young man who was released from school after administrators learned that he "carried the genetic marker" for cystic fibrosis. From my own personal reading of this and related stories, the story seems to revolve around a boy who was asked to leave a northern California middle school after it was discovered in his medical records that he has some version of genetic CFTR mutation. The school apparently acted out of an abundance of caution because there is another student at the school who indisputably has CF, and the school was concerned about the potential for cross contamination. What the article DOES NOT make clear (from my readings, at least) is whether the boy in question is a carrier (i.e., has one CFTR mutation but not the two required to cause cystic fibrosis) or whether he has abnormal mutations that his parents and doctors believe are non-disease-causing. The article above refers to him as a carrier but also mentions that he has a "combination" of genetic markers and that his family and doctors are "monitoring him closely" to make sure he does not actually have the disease. In other words, I'm not sure what the boy's exact medical status is -- nor should I be, necessarily. Those facts are generally between a patient and his/her doctor (and the parents in the case of a minor) and part of the issue with this particular story might be whether such privacy rights were violated in the first place.

Personally, I have several friends with CF, both pre and post-transplant. It's my choice to do so, and I like to think I'm careful when it comes to cross-infection concerns and keeping myself healthy. I want to emphasize that people with CF can have relationships (both in person and through other mediums, like Facebook or CysticLife) and that these relationships -- far from simply being risky and dangerous and scary -- can actually be incredibly helpful psychologically. Our relationships with others who share our disease help remind us that we are not alone, help inspire us to keep going and to do great things with our lives, help drive home the importance of medical compliance and self-accountability, and help make us feel part of something larger and stronger than we are as individuals. In other words, people with CF are important to each other because they give us a community of others like us -- not to the exclusion of others but to the benefit of ourselves (and our sanity).

That said, I understand the debate. I understand the fears. And, you know, I'm not in middle school, so I totally get that parents of middle school children might be more cautious about this particular issue than I am as a full grown adult with adult friends. So for anyone who might need a refresher, here's a good place to start, courtesy of the Cystic Fibrosis Foundation:

Living with CF at School: Guides for parents and teachers

Stopping the Spread of Germs: Handbook on staying healthy with CF (specifically addresses interactions between CFers and the notorious "3 Foot Rule").

At the end of the day, whatever the outcome of the case in question, one of the Cruel Facts about CF is that patients, caregivers, and parents are constantly having to make choices about their priorities in health and in life. There will always be moments of panic surrounding "should my child have this playdate?" or "should I study abroad and/or take this fast-paced job in my dream career?" or "ack! I've been invited to a party and I know it's going to be crowded and I think there might be cigarette smoke going on somewhere but I really want to go because all my friends will be there and so will that guy I like and I have to be normal sometimes and I really really REALLY hate this disease!" (Yes, trust me, it WILL happen.) I personally think it's up to us as individuals to educate ourselves (hint: the CFF and the BEF both have GREAT resources available) and our communities so that we're acting out of real understanding of ourselves, our priorities, and our disease. We can also help out by being open and honest, and by helping other people know more about our disease. Because knowing, after all, is half the battle.

Happy learning, everyone.

Sunday, October 14, 2012

On Speeches and Sampson

I took a long, wonderful walk around the city today. I have to admit to loving this Indian Summer weather, and I think Sampson is right there with me. He posed for this very regal looking shot on the Charles St. Pier over the Hudson River -- nose to the wind and eyes on the boats bobbing along through the current.

It was nice to be out walking in the sunshine, especially after last night's fantastic fundraiser for the Cystic Fibrosis Foundation. Most of you know that the CFF is a cause very near and dear to my heart (and even nearER and dearER to my lungs). Last night the fantastic Young Professional's Leadership Committee for our very own Greater NY Chapter held it's annual "Prom to Remember" event, and I was honored to be able to say a few words on behalf of myself, the Foundation, and all of the amazing, wonderful, blow-your-mind-style awesome 30,000 people living and breathing every day with CF. It was, in a word, epic.

It never gets old, speaking on behalf of and next to and together with all of you guys. It never feels stagnant or unimportant or run of the mill. The experience of being able to proclaim to an audience how great the CF community is and how far we've come in the last 60 years or so since the CFF's founding in 1955 is one that seems forever humbling for me, and I mean that in the best way possible. To know the CF community is to love it; to know the work of the CFF is to admire it; to know the beauty of coming together for a cause is to long for it. This is not a disease that requires any sort of "hard sell" to the audience. I simply open my mouth and share OUR stories, and the wonderful part just sort of takes care of itself.

But last night was important to me in a different way somehow and it wasn't just because some of my best friends in this city had a part in planning the event, or because I got to wear a costume that actually involved a wedding gown AND a tiara. Last night was different for me, I guess, because last night was one of the first times I've spoken about CF since my transplant when I felt truly vulnerable in terms of my own health. Last night was one of the few moments since receiving these perfect new lungs when I felt, well, I guess the right word is probably "uncertain," or maybe even "scared." Because right now I do feel a little bit scared, if I'm honest, and it's not a pleasant feeling to remember -- especially when it comes to breathing.

Before anyone gets too worried, though, let me say this: I am fine. I am dealing with some rejection and infection and drug level issues that are not the end of the world, but that are persistent and frustrating for me and my doctor. This makes them scary. It doesn't make them dire, by any stretch, but it does make them scary. There. I admitted it.

So the other night when I took the stage to talk about CF, I felt particularly vulnerable -- and that made me particularly grateful. I am particularly grateful right now for my kind doctor and wonderful medical team, who all seem to know the right balance between caution and courage. I am particularly grateful for my family and friends who organize, attend, and support events like the YPLC Prom, and who share my life whether I am feeling strong or weak or anywhere in between. And I am particularly grateful for the CF community as a whole for giving me 30,000 plus reasons NOT to feel alone in this journey through cystic fibrosis. Or, in other words, I am particularly grateful to each and every one of you. Everyday.

And if all else fails, I can always take a lesson from my wonderful dog: keep your face to the wind, follow the current, and always remember who's holding your leash.

Friday, October 12, 2012

Life in the Balance

Most of us will make a lot of promises throughout our lifetimes. From our first whispered promises of friendship to a new classmate or neighbor to professional oaths to committing our lives to another or pursuing the very best for our children, promises are important not just because they make public our intentions, but because they force us each to put into words our goals, aspirations, and -- hopefully -- our desire for actual action and follow through. They are important because, among other things, they give us the chance to examine ourselves.

I made one of my biggest promises two years and four months ago today, as I was being wheeled into the OR for my transplant surgery. Some of you might know that I had already had some not so fun experiences with last minute dry runs, and so I very distinctly remember the process of being wheeled off and wondering if this was finally the real deal. And what I remember thinking in my head, word for word, was this:

"Please God and Donor and Donor Family: if you just let this work this time, if you can just let this be it and these lungs be perfect, then I promise to do everything I can to keep these lungs healthy and to live to make you proud."

Not super eloquent, maybe, but at least it was honest. I made that promise with every last breath I had in my body at that moment. At the time I had yet to "meet" Donor Bob or his precious, amazing gift -- I had yet to experience the raw joy that is so-called "normal" breathing -- but I knew in my heart that this was a union worth praying for, committing myself to completely, and celebrating. Two years and change later, I wouldn't have asked for it to play out any other way.

We given many gifts in life to help us live it. Some of us are given more or less at different times, but all of us are givers, and all of us are receivers. The balance for those of us who have received our gifts in the form of new life is to learn how to protect those gifts without compromising our abilities to live with them. I don't know if I've always struck the perfect balance, frankly, and I'm honestly not sure if I'll ever manage to get the scales exactly right. But I do know that I have done my damndest to keep my promise(s) to myself, to Bob, and to all the many, many people who have loved or cared for both of us.

And so, tonight, I think it's important to send a little shout out to all the others out there who part of our collective balancing act. If you've ever asked yourself "where exactly does LIFE fit into all this medical mumbo jumbo?" or "how can I pay it forward for all the kindness that's been shown to me throughout this struggle?" -- well, then this post is for you. I may not have all the answers, but I do know that Donor Bob and I will be right there alongside y'all as we continue to hunt for them.

We promise.

Friday, October 5, 2012

Positively Nuts

I get lots of fun emails through this blog and from the CF community in general.

Yesterday, for example, I got an email asking why I chose to get a transplant. Actually, what the email really said was closer to "why on earth would you willingly let them rip your lungs out of your body, replace them with a dead guy's, and then destroy your immune system to make the whole thing work? And then to top it all off you're now letting them inject you with rabbit guts? This sounds scary. Seriously, lady, you must be positively INSANE!!"

So I wrote back, and the gist of my answer was this: Good question, dude.

And then today I was called (via FB, at least) "intimidatingly positive," which I found particularly funny because most of my friends would probably consider that crazy talk. Because the fact of the matter is that I don't always have a super positive, go getter, CF warrior attitude when it comes to the stuff that is, as the email above correctly pointed out, kinda sorta definitely super scary. I wish I did because I think life in general is probably easier on optimists, but the real truth is that sometimes my own optimism falters, fails me, or just plain isn't around in the first place and I have to make do with the reality of the situation and a not-so-positive attitude. I tend to refer to these moments as "fear spirals" because that's what they feel like -- strong currents of scary circumstances that twist me around and force me into reactive mode, where I feel like I'm being flung in circles and don't really know how to break out of it and get back on track to something better. These moments are, thankfully, far fewer and further between now that I have my new lungs (initial scariness of receiving them notwithstanding, of course), but they still happen. And when they do, I've discovered that the best way to combat them is with what I call "retrospective forward thinking."

See, I told you I was crazy.

Retrospective forward thinking refers to the act of remembering all the goals I set for myself back when I was dying, and all the many reasons I came up with then for making the scary choice to let a doctors replace my vital organs. See, when you're fighting for every single breath and spending most of your time in a hospital bed or on the couch or hooked up to IVs/machines/oxygen, you have a lot of "free" time for stuff like personal reflection. And for me, most of that time was spent thinking about all the many awesome and wonderful things I would do once I got my new lungs. I passed hours and hours thinking, writing, praying, or dreaming about the goals I had for myself and the world I could create if I just kept pushing through all the bad crap, and believe it or not the list I came up with was actually a pretty good guide for what matters (to me, personally) in life. Looking back on it after my transplant I was surprised to see that it wasn't just sickly ramblings -- it actually makes a lot of sense. As a few examples:

  • Give back to people who have given so much to me, both personally and on a larger scale. Find ways to make life meaningful that aren't just about spoiling myself.
  • Spend time building relationships and seeking out connections. Look for people to learn from, to grow with, to laugh with, and to make each other better.
  • WALK MY DOG!!!!
  • Treat my lungs and my body as a gift to be cherished and as a vehicle to help me accomplish my goals. Seek out exercise that makes me happy, stick with it, and do whatever routines are necessary to keep me healthy, breathing, and able to be me.
Pretty simple, I know, but also really valuable. I find myself rereading these and my other goals over and over sometimes -- whether its because I'm in the hospital and receiving a scary new rejection treatment; whether its because my prograf level won't stay stable and I start to wonder if I'm REALLY doing all I can (Should I find a new drug? Am I eating wrong? Maybe I should try taking the drugs with water, at 11:11, while facing East and standing on one leg??); or whether I simply need a good kick in the butt to jump start my motivation and get back to it. To me these goals are like a contract I made between my mind, my body, and my amazing Donor Bob. I feel obligated to keep moving toward what I know is truly important (even if that changes down the road or from time to time) not just because I was given something wonderful, but because these are the things I chose to cling to when I needed it most. 

Life. Purpose. Connection. Health. These are the real reasons I went through transplant, far more so than fear of dying or an abstract desire to stick around for a few more years (though those were part of it, not gonna lie). Those four core goals were and are what keeps me going, helps me through the scary stuff, and makes even the spirals seem like bad weather on an otherwise clear horizon. They are the main reasons I manage even the inadequate amount of positivity I can actually muster sometimes through all this crap that is CF. 

And they are also, for better or for worse, what keeps me Piper -- and all the positively crazy stuff that goes along with it.