Dear Random Guy

Dear Random Guy Sitting Next to Me at the Movie Theater,

First of all, hello and welcome to my blog. You don't know me, and that's totally okay (a lot of people reading this have never even seen me in real life, so you've got one up on them at least!), but since you're here and reading you'll probably learn some interesting things about someone you previously just thought of as "that annoying girl sitting next to me." Things like the fact that I have cystic fibrosis, a genetic and totally non-contagious lung disease that, unfortunately, causes me to cough occasionally. Or the fact that I'm currently on home IVs, which means that I sometimes run a tiny bit behind schedule, which in turn means that I have to rush down to my seat in a crowded movie theater and might, just as unfortunately, be just a little bit loud and breathless about the whole thing. You might also learn, because I'm saying it right now, that it is never my intention to disturb anyone by any of these relatively annoying byproducts of my disease. In fact, when I'm really sick and coughing up a storm, you can bet that I would make a point of staying home and avoiding quiet places like movie theaters. Not because I'm a danger to others, mind you, but simply because it's no fun to cough your way through what should be a silent experience.

Okay, so now that you know a little bit about me, I want to apologize. Yes, that's right, I would like to sincerely apologize to you and your girlfriend for what happened at this afternoon's matinee. See, when I rushed in after a CF-related delay, bounding up the stairs into the theater to take my seat before the start of the actual movie, I knew it would likely make me cough a little bit. And I knew, equally, that the film was just beginning and that people around me might not be entirely pleased. I did not know, of course, that anyone would take it upon themselves to voice the opinion, out loud, that "people who are sick should just stay f-ing home" (censored for the benefit of other readers, but then again we both know what was said), but I guess I could have been better prepared to give an appropriate response.

Instead, I snapped. I leaned over, as you know, and hissed in your face that my condition was genetic, akin to asthma, and nothing that you needed to worry about catching. And I'm ashamed to admit that I didn't say any of this politely; I didn't shrug it off and turn the other cheek, knowing that your comment was said in frustration and ignorance of the whole situation, nor did I calmly touch your shoulder and whisper that it wasn't contagious or that I would be happy to explain after the film. I didn't even pause to consider that perhaps you have your own valid reasons to fear germs, and were simply voicing a concern about being stuck next to someone with a possibly contagious illness. Nope, I did none of that, but I did make myself heard, and for that -- for the way I did so and the hostility in my voice -- I am very, very sorry.

You see, the thing that's hard to explain is that, for someone with chronic illness -- and especially a sometimes loud chronic illness -- the little comments and eyerolls and other most likely well-intentioned little gestures (cough drop, anyone?) can sometimes get a little overwhelming. Not that such an explanation explains or excuses my behavior because, quite frankly, it doesn't. After all, your comment was offensive to me precisely because it failed to take into account the totality of my situation, and yet my response was in fact no better. I responded to you without much thought for your feelings, your experiences, or even the best ways to spread CF awareness. Sadly, in doing so, I may not only have lowered myself to bad behavior, but I might also have missed a chance to truly educate someone about CF. Because this time, when the credits rolled and the house lights came back on, we both shuffled out without a word.

I am truly, deeply sorry.

So, Random Guy, I hope that you went home tonight and thought a little bit about that awkward interaction you had with the annoying woman at the movie theater, because it's been on my mind all night. True, I'm not proud of the way I acted, but I can hope that I've learned at least a small lesson about taking things in stride and not responding in anger, especially to strangers whose stories I don't know. And perhaps if you take the same lesson away from this all, then our meeting might not have been wasted after all.

And we can both be a little bit more proud of ourselves next time when the house lights come back on.

Sincerely,
Coughing Girl

Peripheral Vision

Okay, so if you've been following this blog at all for the past few weeks/months, you're probably familiar with the event that I've now termed "The Great Port Debacle of 2009" and its subsequent less-dramatic, but equally annoying, little sibling, "The Not-Quite-S0-Great PICC Clot Fiasco of 2009." These two events happened within a few weeks of each other (although the Port Debacle had, in fact, been going on for several months prior to its actual diagnosis) and made for a very exciting, if somewhat over the top, end of summer/beginning of fall.

Ah, memories.

Anyway, those days are long gone, and, like any good CFer, I've pretty much moved on to the next big thing at this point. And that thing just happens to be . . . (cue the drumroll please) . . .

peripheral IVs.

View of my arm, circa 1989 (er, I mean yesterday)

So call me old fashioned. Call me old school. Heck, call me retro if you must, just please don't compare me to the Lower East Side Hipsters when you do it. The point is that my veins and I have been partying like it's 1989 for the past week and half or so, and weirdly enough, it actually hasn't been too bad. I mean, aside from the hair bands, the teased bangs, and the Saved by the Bell reruns, we've been managing just fine during our little trip down memory lane. In fact, to date I've had only 4 peripherals in 12 days, and considering that one lasted less than a full day and hardly counts, I'd say that's a pretty decent record. Especially when you add in the fact that most of the placements have been home runs, meaning the line is placed on the first try. Actually, scratch that -- it's not just "pretty decent", it's all out amazing.

I'm pretty sure that I owe this miracle of vein cooperativeness to my 9 1/2 years of portdom. Prior to getting my port, my veins had pretty much put out the "closed for new business" sign when it came to either peripherals or PICCs. Rolling, spasms, collapses, general refusal to give a blood draw -- you name the game, my veins have played it. I'm pretty sure I used to hear an audible groan when I walked into the IV lab for my placements, and nurses have been known to change shifts just to avoid my "veins of terror", but try telling that to my new awesome home health nurse, Janice, and she'd probably just laugh. Because as far as she's concerned, 9 years later, my veins (while perhaps a bit overused and overtired) are nothing more than petulant children waiting to be coaxed into line. What a difference a decade makes, I guess.

There's a lot of debate raging right now amidst my doctors about whether I should remain catheter-free or go for another port. Pre-clot we had agreed on a course of action, but now it all seems up in the air. The thing is, though, I'm suddenly a LOT less anxious about the prospect of going into transplant and beyond without a permanent IV line, now that I know my veins have managed to resurrect themselves to some degree. And it makes me, in retrospect, all the happier that I got the port placed when I did, because I'm thrilled that I managed to save at least some use of my veins for later -- after all, as permanent as a port might seem at the time, you never know when you're going to lose it.

For now, though, I'm happy just to be the old-young cystic with the outdated IV in her forearm. I haven't managed to score one of those nifty IV boards they used to give me at Children's Hospital yet, but it's still pretty darn cool to know that I don't have to get a PICC pulled at the end of all this. And yes, I used the word "nifty" without even a trace of irony, but that's totally allowed when you're going peripheral . . . or so I've been told.

Speculation

Tonight I got asked (indirectly) by a perfectly nice, normal person whether I thought being a lawyer had negatively impacted my health. No, she wasn't making a cute "attorneys are evil" joke -- although I was tempted to respond that my lungs were crappy even before I became a lawyer, but the loss of my soul took some getting used to. Ha, ha, ha, right? But no, she wasn't making a joke; she was actually quite serious and she was asking a question that probably others have wondered about as well.

The implication of her question (I think, as I said this woman was very nice and certainly didn't mean any offense) was that perhaps my job, back when I worked, was too stressful or took up too much of my time for me to really focus on my health. Or maybe she thought that I let my health slide because I was more focused on other things. Perhaps she was wondering if law school itself was too much of a strain, or if the 7 years in higher education was a good use of time for someone with a "fatal" lung disease. Maybe she just wondered whether it was "worth it" time wise for me to be so tied up in school when life is so precious. Maybe she didn't think through any of this and just asked the question because she was surprised to see someone with CF and a law degree -- especially someone waiting for transplant.

So in the interest of answering her question, and because I think it's an important topic given how important both my career and recent choice to take disability leave have been to this blog, I'm going to be totally honest here:

1) I can not now nor will I ever be able to say with 100% certainty that my career choice did not negatively impact my physical health; and
2) If I had it to do all over again tomorrow, I wouldn't change a single thing.

Let me tell you what I do know with 100% certainty. I know that I wanted to go to law school. Badly. It's what I wanted to do with my life, and completely independent of CF it had been my dream for a long time. I know that my health had begun to decline prior to entering law school, although my first couple of years there were not themselves extremely eventful CF-wise. I know that although my job was stressful and at times difficult, my compliance and time-management skills steadily improved throughout the time I was with my firm, actually increasing my chances of staying healthy in many ways. I know that I learned through my job to assert my needs as a CFer as well as a person, asking for days off when I needed them, learning to surrender to the hospital with grace instead of dread (okay, grace MIXED with dread!), and finally grasping how to ask for help when I needed it. I know that I equally learned how and when to push myself, what my limits really are, and how great it feels to meet a challenge everyone else said was impossible for me. I know that it was law school that brought me to New York, the city I love, just as I know that it was also law school that brought me to the doctors I trust with my life, whose advice, help, and wisdom I am so blessed to have experienced these past few years. I also know that when I finally did take disability leave, it had no apparent effect on the intensity, frequency, or general nature of my lung infections, but it did negatively affect my mental health and well being.

I know that I will never look back and think that CF held me back. Most of all, I know with 100% certainty that if I had to look a child with CF in the eye right now and say that it was worth it, I would do so without a second thought.

I don't believe everyone should go to law school, CF or no CF. That was my dream; it could just as easily be someone else's nightmare! But throughout my life there have always been people who have cocked their heads, pursed their lips, and wondered (sometimes out loud) whether I should be doing whatever activity it was that didn't "mesh" with their expectations for a CFer. And I do believe, very strongly, in defying those expectations and false limitations set on us by other people, or sometimes even by ourselves. Because the CFers I know are an amazing group of people -- and I really just refuse to believe that there's a spectrum of life that we cannot or should not participate in just because of our disease.

Maybe that makes me stubborn, but I'm 100% certain that it also makes me happy.

So would I still need a transplant if I had been, say, a sculptor instead of going to law school? Well, maybe, maybe not. I just can't say. In fact, I can't say how any single aspect of my life might have turned out differently had I made different choices along the way. It's not my job to know that, frankly, and neither is it anyone else's on this Earth. But what I can say is that if I had been a sculptor, well . . . I wouldn't have been a very good one, nor a very happy one. Trust me, my experience with the pottery wheel in Turkey when they tried to help me make a vase (end result: poorly constructed ashtray) was enough to teach me that much.

In case you're wondering, my real answer to the question was far more simple and to the point than this blog. I simply looked at this kind, well-meaning, and genuinely concerned woman and told her that I would never know why my health is what it is, but that I had made the decision to stay in the driver's seat of my own life for as long as I have it, and let my CF come along for the ride.

It may not be perfect, but that's definitely my final answer.

Another Day

For those of you who are wondering, it's just another day here in New York City.

Just another day that started out here . . .





. . . and finished up here.




It's another day filled with IVs and nebulizers and oxygen and chest PT and enzymes and antibiotics and dermatology students (not kidding) and discharges that actually happened ON TIME (nope, still not kidding) and doctors wearing "droplet precaution isolation" masks in my room even though I'm officially negative for swine flu just because I still had the sign on my door because I'd really prefer everyone mask/glove/gown up anyway.

Another day of downtown taxi rides and puppy reunions and homecooked (non-hospital) meals and comfy (non-hospital) beds and views from my (non-hospital) window and TV watched from my comfy (non-hospital) couch and maybe even some mild (non-hospital) meditation.

It's another day of gorgeous fall weather and chilly breeze and possible new developments on the transplant front but who wants to think about that kind of stuff anyway because today is just another blessed, wonderful, fantastic, flu-free day that is all about going HOME!

And home is where I plan to stay.

Keep on Keepin' on Like a Bird That Flew . . .

Random Sidebar/Fact of the Day: LOVE Bob Dylan. Love the above-mentioned lyrics. Love listening to my ipod while gazing out the window at the Hudson river and the George Washington Bridge. Love having nothing really better to do than sit around on 5 liters of O2 because I can't leave my room due to hardcore isolation protocol . . .

Whoops, took that one a little too far.

Okay, so the past couple of days have been, um, "eventful", and not so much in a good way. After my super fun day at the races (literally) on Sunday, I was all set to get the H1N1 vaccine and then start IVs on Monday for a quick tune-up. My lungs sounded better than they do with hardcore infections, and my PFTs were still stable, but my increased cough, lung goo (sorry, it had to be mentioned), and the recent growths in my cultures convinced us that we should act early rather than wait. So I started the IVs on Monday evening and settled in for what everyone expected would be a fairly easy and uncomplicated round of drugs.

Then again, if CF has taught me anything, it's to expect the unexpected.

Monday night I ran some medium-grade fevers (around 101) and was a little achey, so I called my doc and we all chalked it up to most likely a vaccine/IV drug combo, especially since it's not uncommon for me to run some fevers at the start of IVs. This theory seemed to be confirmed by a lack of fevers all day Tuesday, although I was tired and a little achey. Tuesday night, though, my fever spiked up to 103.5 and simply wouldn't BUDGE for about 4 hours. Call the doc again, start TamiFlu immediately, check in again in the morning. Wednesday morning, O2 is down, but fever is also only around 100.5. Still no sign of a sore throat, additional cough, or headache -- just achey and feverish. By Wednesday afternoon, when my fever went back up to 103.5, however, I knew I was destined for an all-expenses paid vacay at my favorite "Club Med" -- and sure enough here I am.

Surprisingly though, I haven't run any real fevers since coming here. They brought down my initial fever, were able to hydrate me thoroughly through the IV, and since then I've felt SO much better. My O2 levels are still low, but that's why God invented nasal canulas, right? And they're holding steadily above 95 on the increased dose, which means the old fighters are still working, if a little compromised right now. I have faith that those numbers will bounce back -- they always seem to for me, thankfully.

Now for the REALLY good (if only preliminary) news: early results show that this is NOT swine flu! We're still waiting on the more advanced, more accurate test, but if that comes back negative tonight and I have no fevers through the night or tomorrow morning, I should be free to leave and go home to Mr. Sampson by tomorrow afternoon. Totally visualizing that negative flu result now!

They do think these fevers might have been drug-related after all. My amazing team here includes my wonderful CF doc, as well as two fabulous doctors from infectious disease and vascular surgery, so I'm pretty confident that whether this is drug, virus, or clot related they'll figure it out eventually. At this point, though, I'm just happy to be seemingly on the mend.

I don't mind sharing that this whole flu thing had me pretty freaked out. I'm so sick (no pun intended) of seeing people with CF struggle with this virus and other complications. I hate knowing that life is so fragile that it can hang in the balance of a cough not covered, or a hand not washed, or any other of a number of factors. I also know that this is true for people regardless of whether or not they have CF -- I guess it's all part of what makes life precious at the same time. Still, it's never easy watching your friends get sicker, whatever the cause. I feel blessed to have so many wonderful cystics in my life -- the friendships are really amazing and I wouldn't trade them for anything -- but it still hurts to have to say it: breathe easy, Lauren. You'll be missed.

I have a lot more news to share on the transplant front, and hopefully will be able to update soon when things are a little more certain. And for now I'm just going to keep on keepin' on, and hopefully be home in time for dinner tomorrow.

Piggish Post

This little piggy lived in New York
This little piggy got sick of staying home
This little piggy called about the swine flu vaccine
But everyone said they had none
So this little piggy pulled major strings*
And this little piggy GOT IT DONE!

*Note: The pig from the above rhyme wishes to make clear that she does not endorse "pulling strings" or in any other way demanding special treatment under normal circumstances. Said pig, however, has been known to make exceptions to this general rule in instances where there are wide-spread shortages of a crucial vaccination for which the pig is considered "high risk." Does this make her a bad little piggy? Possibly. Is she willing to apologize? Nope, not a chance.

Okay, I did it. I got the H1N1 (swine flu) vaccine. Actually, I'm going to bite the bullet and be completely honest here: for someone who initially wrote this post, I ended up being pretty much a big wuss when it came right down to the wire on this one. I was more or less told repeatedly by my transplant center that I needed to get the vaccine BEFORE the surgery, and that I should seek it out wherever possible, but NY prioritized school children over high-risk adults (a legitimate decision, for sure, but not one that made my life any easier). And when other CFers I knew started to contract the virus, it definitely struck a chord with me. I think it's fair to say that for the past couple of weeks I've been on 24/7 "virus patrol" -- most of my friends and family now assume that I'm officially a germaphobe. They're not wrong.

Anyway, it all came to a head after I ended up in the ER for the clot and spent the next week more or less tied to my thermometer and ready to spring into action (and TamiFlu!) at the first sign of a chill or muscle ache. Not entirely productive, considering the weather was having a great time playing tricks on me by going from hot to cold -- love autumn in NYC, by the way -- and I of course was still suffering from the aforementioned clot, which unfortunately also causes pain and acheyness. Awesome.

Basically, a very uncool way to live. And definitely not good considering that the holiday season is fast approaching in NYC, with its massive numbers of tourists that this year will also include my own family. Suffice it to say that I was NOT down with the prospect of holing myself up and missing all the holiday fun.

I finally did track down a clinic with the H1N1 vaccine, but they were doing a very long, intensive pre-screening process and it soon became really clear that waiting on their ridiculous and not-so-efficient system wasn't going to get me the vaccine any faster. Plus I wasn't thrilled about the whole "public flu clinic" scenario -- not to sound snobbish or anything, but I really didn't want to be exposed to the virus while waiting to be vaccinated.

So I got on the phone and started calling basically anyone I thought could help me with this one, and eventually someone came through. I won't name names here, but suffice it to say I have some very wonderful and amazing people willing to go out on a limb for me. Within 24 hours of stepping up my search for the shot, I had a dose of the vaccine "reserved" for me to get on Nov. 1st. Granted, I did end up having to go to a pediatric allergist clinic, which involved a waiting room full of somewhat ill children, but the nurse was nice enough to get me in ASAP, give me the shot in a private office rather than an exam room, and then send me out into the not-so-germy hallway while she processed everything before sending me on my way. Thank goodness for compassionate and smart nurses who understand high-risk patient protocol. To say that I'm grateful for the chance to have the vaccine is just about the understatement of the century.

Honestly, I'm not normally a worrier when it comes to viral infections, although I do try to be cautious. I hate taking my health fears overboard and I've never been one to stay behind just because of a potential virus scare. But these last few weeks have seen the CF community (particularly adults, from what I can see) get hit hard with this flu. I don't say that to scare anyone (and I do plenty of CFers who have made full and uncomplicated recoveries, to be sure), but in the humble opinion of THIS little piggy, now is definitely the time to be calling your local health department, bugging your clinic, calling your local CFF chapter, and taking whatever steps are necessary to ensure that you're as protected as possible from this particular virus.

As for me, I'm looking forward to enjoying the holidays this year . . . and not just from my apartment window.

Fighting CF Never Looked So Cool

This is Ben:

This is Ben 25+ miles in to the 2009
New York Marathon:


Wow.

So as you might have guessed by now, this amazing, fantastic, and pretty much all-around-rockstar guy named Ben ran the New York Marathon this morning. 26.2 miles through all 5 boroughs of New York City. Or, to put it another way: hardcore.

What you might not know is that Ben ran this marathon to support the Boomer Esiason Foundation, and that in doing so he single-handedly raised about $4,000 to help fight cystic fibrosis. Seriously, did I mention this dude is a total rockstar?

I get asked all the time about the transplant process and what it's like to be waiting on something like this. My answer? Honestly, it's an amazing feeling to be as surrounded by as many unbelievably awesome people as I am. To have people in my life who are willing to take their first time running a marathon (HUGE accomplishment, by the way) and use that event to help fundraise and spread the word about CF is, in a word, indescribable. And I know this might sound cheesy, but who can imagine not fighting to stay healthy (through the infections and the port removals and the blood clots and the H1N1 pandemic) when there's someone out there who is strong enough to run 26.2 miles, and kind enough to do it all in honor of finding a cure?

Someone kinda like, well, this guy:

It all sort of leaves you breathless -- in the best possible way.

PS: Ben totally doesn't read this blog (he gets enough of my snarkiness in person), but I told him he'd be featured on it tonight and he just might be checking. So if you want to say thanks to someone who not only ran for CF, but did the whole race in under 5 hours (ahem, rockstar, ahem), feel free to do it here!