Inquiring Minds

Hello, beautiful blog readers.

I'm sorry I haven't written in a while. After I get out of the hospital there's always a sort of "regrouping" that occurs -- time when I just kind of struggle to get back into the swing of normal (ahem, well, normal for me anyway) life and all that entails. I'm sure many of you out there know the drill as well as I do: there are new med schedules to synch up with whatever routine you already had, new prescriptions to fill and doctors to visit, new additions to your day like extra blood draws or physical therapy, weight to gain (yay for no more hospital food!), friends to call, emails from frantic relatives/coworkers/teachers/friends/friends-of-friends/cousins-of-friends/mailmen/etc to answer, and relationships to be renewed after your short "mini-vacation." Honestly, I sometimes think the time directly post-hospital is more difficult for me mentally (and sometimes physically) than the time spent actually IN the joint. Granted this is probably because I tend to be pretty harsh on myself and focus on whatever I'm NOT accomplishing rather than the things I AM, but still. The fact remains that life post-lockup is sometimes, shall we say, somewhat less than relaxing.

All of which is just to explain why I haven't managed yet to sit down and write a real, honest to goodness blog post in the past week or so. And, quite frankly, why I'm still not quite able to do that today. Yep, sorry guys. I don't have any health updates (see my doctor again tmw, actually) or news to share right now, so I decided to take the cheater's way out and do something I should have done a long time ago.

Answer your questions.

See, if you glance over to your left, you'll see a contact info section on the sidebar of this blog. A surprising number of you have not only found that little hidden treasure, but also used it, for which I am both grateful and (gotta be honest here) totally shocked. The number of you who want to talk to me about everything from your wonderful lives to, well, your breath (or lack thereof) is both humbling and really exciting, because I get to see for the first time the depth and diversity out there within our little CF community. So cool. Anyway, more to the point, many of you also include in your emails questions about me, my life, my health, and my "everything in between." I try my best to respond to everyone personally, but I also get a lot of repeat questions and some that are just too unique and creative not to share with the whole. So, without further ado, I bring you the first ever edition of Everything You Ever Wanted to Know About Me (And Weren't Afraid to Ask!). Enjoy!

Q: Alright poser, you talk a lot about being "from Colorado," but I've also heard you mention a whole bunch of other places that you also say you've lived. Where were you born, anyway? And did your moves have anything to do with your CF?
A: The simple answer is that I was born in Colorado Springs, CO (a city renowned for its beautiful views, Olympic Training Center, and a whole lot of military bases). My parents both have roots in TX and OK, though, so when I was young we did move to Houston for a short time, then moved back almost immediately. The return to CO was, so far as I know, the only move that was primarily driven by my health needs. Beyond that I have lived in Boston, Denver, Atlanta, and New York City. Through it all I was blessed to have great care primarily out of Children's Hospital of Denver.

Q: Your dog is super cute. What the heck is a "shorkie" anyway?
A: Shorkie is a fancy name for "mutt" in that it denotes a shih-tzu (sh) and yorkie (orki) mixed breed. Sampson was sold to me (yes, I admit that I bought my dog. I am not, it turns out, the most socially responsible person on the planet) as a shorkie. In retrospect, I think this is untrue. He looks waaaaay too much like a Lhasa Apso for me to be satisfied with the "shorkie" designation.

Q: If you had your whole transplant journey to do over, is there one thing you would change?
A: Wowza. Um, yeah. I mean, I think so. It's actually hard to say, because the result was so amazing and I'm one of those people who truly believes that events flow out of each other, so I'm not sure I would "change" anything for fear of disrupting the final outcome, if that makes any sense.

I will say this: my family had a very dark time right before my actual call for transplant. There's a blog post about it somewhere (look around June 9th or 10th in the archive), but basically we were confused and thought that we had actually been knocked down on the list. We went out to dinner and had this tearful convo where everyone kind of let loose, and it suddenly became very clear that we were all really struggling to hold it together. I wish, in retrospect, that we could have been more honest about all that before the night in question. I wish we hadn't lost the faith, even for those few hours. Because getting the call from that dinner table was hard, and I was beyond shaken up by it all. I really wanted to be more peaceful as I was wheeled into surgery -- as it was the whole experience (from the fight at dinner to the disorganized chaos at the hospital upon arrival) was rattling. Not so fun, and I wish my last memories of my old lungs were a little sweeter.

Q: What are your top three things to have in the hospital?
A: Easy: 1) my own pillow/blanket, 2) something that connects to the outside world (preferably computer, but phone works), and 3) my own snacks. Obviously this assumes you would bring your own comfy clothes as well, but if not sub out #1 for clothes. I hate sleeping on hospital bedding, but I'd rather do that than wear a gown all the time!

Q: What are you finding to be the hardest thing about post-tx life?
A: Right after surgery EVERYTHING was hard. When I first came home I couldn't walk much, couldn't focus attention on anything, and couldn't really muster up much enthusiasm even for things I really wanted to do. I hurt and was tired, and I cried A LOT (weird for me, for sure). I actually wondered if I had made such an awesome choice. All that changed about 4-5 weeks post-surgery, and then I felt great. Seriously, it was a total "welcome to the world" moment...I just woke up one morning ready to kick some proverbial butt. And yes, granted, it was more of a transition than that in real life (little accomplishments every day added up), but it really felt kind of like flicking a switch when I finally crossed that line. Now I feel very much like me, only better!

Q: OMG, Piper, I've been reading your blog and I can't make sense of any of this. You got a transplant! You should be healthy! Why were you in the hospital? Are you going to get out soon? Come one, be honest. I can handle the hard truth. I just need to know one thing: ARE YOU OKAY?!
A: Yikes. Okay, first, take a second and just breathe. The last thing I need is any of my wonderful breathheads passing out from worry over ME (especially since I know we all have so much of our own stuff to deal with). So just relax, and then trust me when I say the following message, which I mean with all my heart and which is 100% the truth as I know it.

I. Am. Perfectly. Fine.

Yes, I have infections and yes, I had to go to the hospital. The thing is, though, I felt fine going in, and now that the drugs are done I feel fine again. I need to get my sinuses checked out because they may be dripping into my lungs. I need to get my weight up a bit. I need to increase my WBC count and I need to STAY HEALTHY. Other than that, though, I'm golden. The hospital stay mostly consisted of meds; meds that they don't like to do at home because of their side effects and/or special administration requirements. But for all intents and purposes I checked into the hospital to: 1) start polymyxin, 2) desensitize my body to cephalosporins, and 3) complete an in-hospital treatment for a virus. Easy peasy, right?

Q: What made you start blogging?
A: Basically I wanted a place to tell people (mostly CF friends who don't live in NYC) about my transplant eval experience. I realized pretty quickly that I didn't have time to fill everyone in on everything individually, and I started the blog to kind of post updates and thoughts that were too long or silly to repeat over and over in 50 separate emails. This blog is basically my response to the mass email, because I hate those.

As it grew, I expanded the blog a bit to include more day-to-day CF/tx stuff. My original thought was that this would be a chronicle of working life with with CF -- particularly in a fast-paced professional atmosphere. I soon realized that 1) while I was working I had very little time for blogging anyway, and 2) I was getting sick so much by the time I started this blog that my posts were less about balance and more about how to find a lifeline when you're drowning. I left work in April, 2009 -- about 9 months after starting this blog. I still believe that it is 100% possible to find a good, fulfilling, healthy balance between work and CF. I think I did balance work and CF effectively (not, however, perfectly) for several years. By the time I started this blog, however, it was clear that I needed to start scaling back and focusing on transplant. I did work full-time until about one year before my transplant, however, and I'm proud of that.

Q: How many nicknames does your dog have anyway?
A: A LOT. The most common names used on this blog are Sampson, Sam, Sammy, Sam-man (also written The Sam-man), Sammybear, Puppybear, Bear (also written The Bear), and Bearcub. Other people in my household call him Sammy-lito and Bearser, while my friend Julia calls him "The Muff" (short for muffin, maybe?). My sister, I should note, calls Sammy "Samuel P. Samuelson" (the "P" apparently is for "puppy"). This is decidedly NOT Sam's name, and I tell her that frequently.

Interestingly, none of these reflect the actual name on his papers which is, I kid you not, SAMPHSON. Yeah, I was horrified too.

Q: Who is this sister we keep hearing about? Is she older than you, or younger?
A: Erin Beatty is a wonderful woman best known for her grace and talent in performing 2 different (but equally thrilling) jobs: 1) Designer for SUNO clothing line, and 2) Sister to Piper Beatty, blog goddess extraordinaire. More to the point, Erin is kind, lovely, fun, smart, and incredibly poised under pressure. She has more than once kept my entire family sane and she has great fashion sense. She also once thought the Dire Straits were singing "Money for nothing and your checks for free," which I believe shows her many hidden talents as a lyricist and/or advertising jingle writer. She is slightly less than 3 years older than I am, and is the world's best sister. I am definitely the president of her (very large) fan club.

Oh, yeah, and it's also her birthday today. Happy birthday, Erin!!

And there you have it: more about me, my dog, and my family than you could ever want, need, or even imagine. On the other hand, if any of you DO still have questions (about anything), please feel free to send them over to the blog email (matteroflifeandbreath@gmail.com -- note that there is NO "a"). I don't promise to have all the answers, but I promise to give you my version of them, and that's the best I (or maybe any of us) can do.

Much love, beautiful people.

Perfect (Kind Of)

Wow. Okay, so where to begin? For lack of a better intro, I'm just going to start with the important stuff:

I've been really, really sick.

Seriously, when I say "sick" this time, I really mean sick. As in, unbelievable-grossness-meets-super-sedated type sick. Or like...well, like CF sick, really, so I'm sure a lot of you out there know what I'm talking about. The high fevers, vomiting, lack of appetite, high heartrate, low O2, would-get-scared-but-any-emotion-just-serves-to-make-my-headache-worse kind of sick that no one ever really wants to go through. And I have to be honest, it wasn't particularly pretty. And of course it was compounded by the ever-amusing (except when they're not, in which case they are really, really NOT -- trust me on this one) effects of sedation. Wow. Good times to say the least. I think the only thing more fun than being hunched over the toilet while running a fever is being in that position and then looking around and not knowing exactly where you are or how you got there. Yeah, it was just that amazing.

That said, I survived. Thanks to the help of some very wonderful friends willing to put up with my randomly spouting nonsense due to the drugs and, of course, the passing of our good friend time, I was pretty much back to "normal" within 24-48 hours. Of course, the definition of "normal" right now for me includes both an aspergillus (fungal) infection and a pseudomonas (bacterial) infection. So no change to the plan, as I'm still doing the IVs, but now I get three drugs instead of one. Oh well. I'm kinda of the mindset that once you're on it really doesn't much matter -- might as well load the suckers up and wipe out everything at once, right? And the best news I got today (which is also, come to think of it, pretty much the best news possible...ever) is that the results from my biopsy are back and there is NO rejection. Question: is it weird that I feel an odd sense of victory over my own immune system? Not sure if that makes me the winner or the loser, honestly, but it means I get to keep breathing, so I'll take it.

As we used to say in college: major score, baby. (Which statement, by the way, has the unfortunate side effect of making my college friends and I look bad. We weren't normally this uncool. I promise. Kind of.)

Okay, so all that aside: the fact remains that for the past two nights there has been a sick presence in my apartment. On Monday night, without question, I took the grand prize. On Tuesday night, however, things got a little murkier.

The short story is that Sampson got the hiccups. I'm not entirely sure how it happened, though I think it was brought on by literally inhaling two organic mini milk bones. I'm pretty sure those things are just expensive crack for dogs, because Sam goes at them like a deprived junkie every time I head toward the treat closet. Which, to be fair to me, is less a "treat closet" than a "treat shelf" -- my dog is not spoiled enough to have his own closet, though I readily admit that the distinction is a fine one.

The larger point here is that, having acquired the hiccups, Sampson went what could maybe be politely termed "crazy." There are less polite terms, but I'm not going to mention them here, because they'll make my dog look like some sort of Dr. Jekyll and Mr. (Raw)Hyde. Suffice it to say that this was not good. In his panic, Sampson began by jerking around in a pretty solid imitation of a seizure, or an electroshock therapy patient -- by which I mean all-out, on-the-floor style convulsions. And, to be perfectly honest, he does this sometimes. (Yes, I'm aware that I am indicting myself for possible puppy neglect here, but it has, as a matter of fact happened before. My mom has even seen it. In my defense, the vet has declared him seizure free.) So I sort of wait the convulsions out, at which point he starts tearing around the apartment like a madman. And that's impressive, since the entire apartment is only three rooms and has hardwood floors. I swear that dog hit so many walls that if he wasn't prone to seizures before, he may be now. After which mad dash he ended up in the bathroom, he grabbed his bone for some hardcore gnawing, then ended up in my bathroom "digging" his way through the bathmat, and generally acting distressed. His grand finale included throwing himself on my bed and whining while trying to snuggle closer and closer to my body, and that continued until the hiccups subsided -- about 20 minutes later.

My emotions during this display ran the gamut from amusement, to concern, to near-panic, to cornering the dog and determining that yes, he did in fact have the hiccups and probably wasn't dying, to second-guessing that, to annoyance, and back to amusement mixed with a lot of relief when it finally did turn out to be nothing.

Okay so sick shorkie + recovering Piper = kind of funny, kind of crazy blog post. Case closed, right?

Well, maybe. And then again, not so much. Because the interesting thing about watching this whole performance was the realization that when faced with the hiccups, Sampson turned into, um...well...kinda...me?

Yeah, you read that right. What I mean to say here is that apparently, when sick, there is something deeper and gutteral that tends to take over, especially when we don't understand what's going on with our bodies. (Try as I might, I was unable to fully explain to Sam the nature of hiccups. I actually had him drink some water and "promised" him that it would make him feel better. It didn't. Then I remembered how much I hate it when people make promises about my health that don't pan out. Shame on me.) At any rate, the reaction Sammy had, though probably more physical and overt than what I would have done in a similar situation, was something I could definitely relate to on some level. I've FELT that need to run around and try to escape whatever is chasing me -- I've actually acted on it, though with lung disease that one is hard. I've FELT that need to grab on to something -- anything -- familiar and distracting. To retreat somewhere dark and lonely where I can go crazy in peace. And finally, of course, to whine and seek comfort. That one in particular made perfect sense to me. Right, mom?

Granted, Sam was suffering from a case of the doggy hiccups. I'm not going to sugarcoat things here: transplant is not mild indigestion. Far from it. But having so recently experienced my own first "real" illness post-transplant, and acknowledging that I really do have no clue how to manage this "new" body of mine, I couldn't help but empathize with my scared little puppy. Not that I'm claiming this is some sort of mind-boggling revelation or anything, but I really do find some comfort in knowing that maybe I'm not alone in my reactions to feeling out of control sometimes. Maybe we all need a little retreat into the bathroom to try and dig our way to freedom from the tiles. And once we're done with that, it's nice to have someone to curl up with -- preferably someone willing to listen to you whine.

The moral of this story (if there is one, I guess), is that I've now had my first bout of random sickness post-transplant, and Sampson has suffered the effects of his own gluttony, and believe it or not we've both survived. Not that it was easy, or fun for that matter. It wasn't. We both had our moments of being scared, of not understanding, and of flat-out wishing we could run away. (If it hadn't been for my migraine, believe me, I might well have tried to dig my way out of the bathroom.) As it was, we were both about as lucky and as blessed as anyone can be in this crazy life. We got better. Which fact leaves us with the chance to start it all (again) tomorrow.

Perfect. Kind of. Maybe? For now.

Winding Road

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

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

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

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

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

Ever notice how things rarely go according to plan?

Here's what I know:

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

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

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

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

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

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

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

But I'll get there.

Of Fun and Fire Alarms

Note: I originally wrote the following as an email sent to one of my friends, but then decided to share it here since it involves ridiculousness and Sampson -- two things that I happen to know you guys just can't get enough of. Just a warning, the language isn't really kid appropriate and some people may find it offensive. And this post has nothing to do with CF. Or transplant. Or breath in general. This one is all about life, baby. Well, life and a malfunctioning fire alarm, but that's just not as catchy. Enjoy.

it's 5:46. am. and i'm awake. writing you emails. and, considering that i have no job and thus rarely get up before about 9 am, i feel like this probably requires an explanation. luckily, i have one. and it's good.

the reason that i am awake and writing you emails has nothing to do with my inability to sleep. nor does it have anything to do with you. or with sampson. or, quite frankly, with any of the 9,876,542 legitimate reasons one might have for being awake and writing emails at a godforsaken time in the pre-dawn hours. i am not, for example, rushing to catch a 6 am plane. nor am i sick and on my way to the hospital via ambulance and/or helicopter. it has nothing to do with a natural disaster or the apocalypse.

nope, it has nothing to do with any of these reasons. what it does have to do with is a motherfucking battery.

i think.

roughly speaking, the story goes like this: at about 4:30 this morning, i was awakened by a very loud, very high-pitched, and very repetitive noise echoing throughout my not-so-very-large apartment. this was problem #1, and (given the fact that even very sleepy pipers have the logical reasoning capacity to realize that alarm = bad, although i freely admit that tends to be the extent of my skills at that hour) this problem provoked an immediate response in the form of movement from the bed into the kitchen/living room, aka the source of the noise and the location of BOTH of the two alarms in my apartment. um, yeah. we'll discuss the logic of placing two smoke/carbon monoxide alarms in a 3+ room apartment and concentrating both in the same room later. brilliant.

so anyway, i go into my living room. and i go in there alone -- meaning without my dog, who chooses instead to remain behind in my bed with his head (no joke) somewhat buried under my comforter. in other words, any delusions i might have had about guard dog grandeur go straight out my 18th story window. sigh. but i digress...

back to the point. okay, so i'm in the living room. and the first thing i notice is that there is 1) no fire, 2) no clear signs of a fire in another location, such as smoke, heat, or large men in red raincoats. this is a good thing, in theory, except that it leaves me with no explanation for the still-wailing alarm aside from either malfunction or carbon monoxide, neither of which sound like entirely pleasant options. i open the door to my hallway and discover that no alarms appear to be going off in any of the other apartments, which means it's just me disturbing the peace. lovely. i contemplate leaving the door to my apartment open on the theory that if i can't sleep, no one else should either (and by "no one else" i may or may not mean the devil child down the hall in particular), but neighborly goodness wins out in the end and i retreat back into the apartment and close the door. i deserve a medal for being nice. even worse, the noise appears to have gotten louder during my brief stint in the hallway. maybe it's relative. i think it's more likely a conspiracy of badness against me. yeah, that's right: a conspiracy of badness. you read it here first.

to add to the fun, sampson has heard the door opening and closing during my departure from the apartment. and apparently his fear of being left alone is greater than his fear of loud noises, because my big brave boy has now come into the hallway and is looking frantically at the door. when i return, he bolts into the hallway. okay, fine, except that i clearly have to close to the door to keep up the general misconception on my floor that i am, in fact, a nice person rather than a raging bitch who enjoys torturing her neighbors with loud noise at 4 am. which leaves me with two options: either close the door and leave the dog in the hallway, or call the dog back into the apartment and close him in with me. normally, of course, this is a no-brainer, but as i may have mentioned, my apartment at this point in time is really fucking loud. and my dog has just proven himself terrified of the loudness, so it seems kind of cruel to make him come back inside. in the end, i opt to allow him to stay outside the door while i go back in to deal with the noise. exeunt the shorkie, stage left.

the next step is obvious: call the building doormen and whine. so i do. and proceed to have the following conversation with my doorman:

doorman: huh, i can hear the alarm going off [by which he means he can hear it over the intercom because, as i have already pointed out, my apartment is REALLY fucking loud].
piper: yeah. i don't really know how to fix it, or even what the problem is.
doorman: is there a fire?
piper: um...no? i mean there's no smoke, there's no smell, and i don't see any fire. it's not a very big apartment.
doorman: is there any carbon monoxide?
piper: i don't know.
doorman: well can you smell it?
piper: carbon monoxide doesn't smell. that's why you need an alarm.
doorman: oh. well, i can hear it...

and so on.

it finally gets resolved that the doorman will send up a maintenance man, which would be great except he prefaces this declaration with the warning "but i doubt he'll be able to do much and i can't get anyone else here until morning. can you maybe just go to sleep?" mind you, this is after he has repeatedly mentioned that he can hear the alarm loud and clear even through the intercom. i kindly inform him that ignoring the disturbance until morning isn't really an option. then i hang up and begin considering dog-friendly alternate housing arrangements. at which point i become vaguely aware that there is yet another noise now competing with the alarm. similar in tone, annoyance, and general volume, this second noise is somewhat lower in pitch and appears to be coming from the hallway. so i walk in its general direction, and finally open the apartment door, which swings smack into a loudly HOWLING sampson.

so much for my neighbor of the year award. are. you. kidding. me?

the shorkie comes back in with me, then proceeds to jump up on his purple chair and commence shaking and crying. meanwhile the maintenance man arrives [his first words are "holy cow, it's loud in here!"] and requests a ladder. i give him a folding chair. after about 5 minutes of staring at the machine and occasionally poking it with his index finger, he returns to the floor and announces that he doesn't understand the problem, but will return shortly with a battery. he asks whether the alarm was going off when i went to bed. to ask this he literally has to shout at me, and i'm standing less than 2 feet away. why does the entire apartment staff seem to think that i'm capable of sleeping through this alarm? again, i say a polite no and resist the urge to point out that 1) it's really, REALLY fucking loud, and 2) it clearly WOKE ME UP, which means it probably wasn't going off before i woke up. the guy leaves in search of a battery. sampson continues to cry. i suddenly feel much more charitable toward people who use the expression "fuck my life."

fast forward about 10 minutes. the man has returned with a battery and is once again on a chair in my hallway. the shorkie has escaped out the door again and is sitting outside by the elevator bank. in an attempt to strike a balance between playing hostess to the maintenance man and being a responsible dog owner, i am also sitting in the hallway in my pajamas and occasionally pulling open my apartment door to stare at the guy on the chair and listen to him shout at me that he doesn't know how to turn off the alarm. which, you know, i could probably have guessed by myself, considering that the alarm is still going off. he also wonders how the alarm is able to continue terrorizing the entire apartment even without batteries. this is, in fact, one of the great mysteries of life, and i agree with him that it's stupid. if i want to remove my alarm's batteries and risk dying a fiery death, shouldn't it be my right to do so in relative peace and silence? also, given the fact that the alarm has now been blaring for well over 20 minutes and not a single person has emerged from another apartment, i'd say the argument that my alarm going off somehow protects other people in the building is more or less bullshit. clearly my so-called "neighbors" care nothing for me or for their own safety. next time i'm leaving the door open for sure.

five minutes later the maintenance man stops complaining about the noise long enough to replace the battery and the alarm stops. kind of. maybe? well, slows down anyway. basically the alarm goes from a constant blaring noise that is really, really, REALLY fucking loud to a more dignified single beep that is only kind of fucking loud every 2 minutes or so. which improvement is clearly good enough for the maintenance man, as he immediately jumps off the ladder and heads for the hills. as he reaches the elevator i venture to ask whether the building will send up someone more familiar with the alarm system in the morning. (or someone with a sledge hammer. i'm really not picky at this point.) he seems surprised and asks why i would need such a thing. the alarm beeps, triggering loud barking from sampson, who has decided that this more manageable noise is not as scary and therefore constitutes a chance to show off his manly courage in the face of any and all intruders. i am less than impressed. the maintenance man nods knowingly and promises to send someone up, but warns me it might be noon or later before they can get there. he advises me to go back to sleep. sampson growls warningly at the impudent alarm, and i wonder which of them is the inherently dumber creation before sampson begins licking my feet protectively. oh well, at least he's cute.

so now i'm in my apartment with a sort-of-tolerable alarm which may or may not have a problem other than the battery and a sort-of-lovable puppy who may or may not be the least brave animal on the planet, contemplating whether is hould attempt to go back to bed or just give up and make a shitload of coffee instead. all of which goes toward explaining why i'm sending this email at 6:06 am. and why i'm really, really excited to move.

goodnight.

Sam, I Am

I've spent some time (but not nearly enough) on this blog telling you all about how awesome my family is. In case you haven't quite caught on yet, I'm fairly certain that without their unflagging support I would be off living in a ditch in some highly desolate area, clutching my (evil) home PFT monitor in one hand and mumbling "I don't need no stinkin' lung transplant" over and over under my breath while attempting to borrow IV supplies from the friendly junkie down the way. An exciting career choice, sure, but not one that I feel would be particularly productive for me at this point in my life. Suffice it to say, then, that support systems are key when it comes to preparing for a double-lung transplant, and I'm happy to report that I have been blessed beyond measure in that department.

There is, however, one critical member of my team who really never receives (or asks for) much recognition. This is a guy who goes by many names (or, rather, many nicknames) and wears many hats in our household. He's on full-time cuddle and distraction duty, pulls his shift as personal exercise trainer, and makes it his personal mission to make sure I replace my Pari cups on time by periodically chewing the old ones into a slobbery mess of unrecognizable plastic -- purely for my benefit, of course. He's also the guy who officially reached adulthood this Sunday by celebrating his landmark second birthday. Congratulations, Sammybear. You've come a long way, baby.


Yep, it's beyond doubt that Sampson forms a key part of Team Piper, and I guess that's hardly surprising given his sweetness, loyalty, and, well, really, really soft fur. As a friend told me the other day, "happiness is a warm puppy." Agreed.


What is slightly surprising, though, is how this little man came to join my squad in the first place. In august of 2008, I had just recently completed the vast majority of my evaluation for transplant. Told by the tx team that I was too healthy to be immediately listed but would need to be followed closely, I returned home, started this blog, and began the long (and ongoing) process of teaching myself how to wait (or, as was the case at that point, how to wait to wait). I entered the transplant odyssey cautiously optimistic, but also very much aware that it was the start of a new stage in my disease and in my life. And it was most likely this awareness that caused my to put my plan to get a puppy on the back burner for the time being. Because surely, I reasoned, it's far better to wait until after the major surgery that can't be scheduled in advance (and the waiting for the major surgery that can't be scheduled in advance) to make a major life decision like adopting a dog. After all, timing is everything in this game, right?

Right.

Fast forward two months to October 2008. I spent a beautiful day tooling around the Museum of Modern Art with a close friend and, upon leaving, we happened to see a small shih-tzu and his owner hanging around on the sidewalk. This led to a conversation about my decision not to get a dog right away, and also to my emphatic declaration that, if I were to get a dog, it "would definitely not be a shih-tzu!" (As an aside, I don't mind admitting that I suffered for years from PSTSD (Post Shih-Tzu Stress Disorder) thanks to a very aggressive and deceptively named little terror called "Puppy.") I figured that my authoritative tone and mature stance on timing settled the issue pretty conclusively: no dog right now, and no shih-tzu ever.

I adopted Sampson, the shih-tzu mix, the next day.



Yes, really.

Turn out that while I was boldly daring to set the course for my own life (or at least insofar as furry companions were concerned), God and my sister had other plans. And these plans apparently involved waking me up from my Sunday afternoon nap to rush up to the West Village, where my sister had already found and fallen in love with the puppy she pre-emptively took to calling her "nephew." My role in this play, it seemed, was simple: show up, adopt the dog, and welcome into my life a new era of chaos, housebreaking, chewed up medical equipment, and unconditional love.

In the slightly over one and a half years since Sampson joined my family and my support squad, I've finished my transplant evaluation, battled a blood infection and a seriously ridiculous port-removal saga, been actively listed for transplant, waited nine months on the list (and counting!), had over 15 rounds of IV antibiotics, and survived several dry runs and one crazy "damp run" for new lungs -- all with my amazing doctors, my incredible family, my awesome friends, and my wonderful puppy by my side.


Wow.

It's been a long journey so far, and I have every reason to believe that will get even more intense before it's over, but it has also been worth every mangled neb cup, chewed through power cord, xopenex rocket inhalers, and every moment of life and breath in between.


Happy birthday Sampson-bear!

- Posted using BlogPress from my iPhone

Reach Out and Hug Someone

In my now 8+ months of navigating the ins and outs of transplant, I've learned a couple of important lessons. Some of these lessons, like the obvious "cherish each breath," or the slightly less obvious (but equally important) "never let your dad go out bike riding by himself in the middle of Manhattan after the dry run from hell," have proved invaluable and will no doubt have a long-lasting impact on my life (not to mention my father's).

Others, well...let's just say that not all lessons are created equal.

I'm not really sure what the value was in learning, for example, that "shoes and pillows will randomly go missing in the hospital." True, this is a fact of life that all chronic patients will eventually have to deal with: stuff does indeed sometimes get lost in the craziness that is a hospital admission. On the other hand, did I really need to sacrifice a perfectly good pair of Pumas and my sister's favorite bed pillow for that lesson? I doubt it.

Still, though, lessons are lessons, and I've been trying to take the good from all of them, no matter how ridiculous they might seem at the time. So when I found myself recently at my center's mandatory lung transplant seminar series, I honestly tried hard to listen and catch whatever little life lessons might be gleaned from the day's lecture. After all, I'm nothing at this point if not a dedicated transplant patient. So I listened, and I learned, and I was right there with the speaker until suddenly, out of the blue, she imparted these words of wisdom: "Your lungs may be sick, but you still have your arms, right? So reach out and give someone a hug!"

To be honest, I didn't hear too much after that.

Now before anyone jumps to conclusions, I would like to state for the record that I am in no way anti-hug. I have nothing against hugs as a show of affection, gratitude, or consolation. Truth be told, in fact, I rather enjoy a well-timed hug from someone I like -- it shows me that the person cares, or at the very least that s/he is willing to fake it. And that sort of gesture can go a long way when you're dealing with declining health and a seemingly endless parade of dry runs, trust me.

But still, hugs? Seriously? I just wasn't buying it. Granted I don't have a masters in social work to back me up on this, but the importance of hugs seems like a lesson better suited to a room full of nap-deprived kindergarten children than a room full of oxygen-deprived transplant patients. Not that there weren't other, better points made in the seminar (to be fair, some of the lecture was actually pretty useful), but somehow I found it hard to get past this one piece of lukewarm advice. Because telling a transplant patient that a hug might be the answer seems to me kind of like offering a gunshot victim a band-aid. Sure, it's helpful insofar as it shows that you at least noticed the guy was bleeding, but it also seriously underestimates the scope of the original injury.

Nonetheless, I came home that evening determined to try out my newfound life lesson. Well, okay, not really. I actually came home just as cynical and disbelieving as I was during the lecture. That is, until I saw Sampson sitting on the couch, minding his own business and seemingly attempting to nap in all his cuddly cuteness. And this, I decided, was the perfect time to try out that "hug lesson" that I had so recklessly ignored. After all, my arms weren't sick, right?

As I reached out to wrap my arms around my cuddly little shorkie puppy, I couldn't help but notice how right the speaker's advice had actually been. I hadn't even completed my hug yet, and already I was feeling better, lighter, happier, and...slimier?

Um, yeah, you read that correctly.

Turns out that when shorkies appear to be napping they might actually be chewing a small rawhide bone into a disgusting, mushy mess inside their sneaky little mouths. And when innocent humans reach out to pet or hug these shorkies, they may find themselves suddenly and without warning covered in the gooey remains of said bone, which the shorkie has either offered to them as a gesture of returned affection or (more likely) spit at them in a defensive attempt to avoid the unasked-for hug. Either way, I'd say the moral of the story is probably "never try to test out bad transplant advice on an unsuspecting puppy."

Lesson learned.

Day in the (Transplant) Life

Disclaimer: With a couple of exceptions for Sampson and the view from my apt window, most of the below were taken at my hospital, under the unflattering light of an exam room, using an iphone. Suffice it to say these are slightly less than "glamor shot" conditions -- consider yourself warned.

So today my mother:

and me:

left this little guy behind:

and headed away from this view:

(all the while dragging this* with us):

until we finally reached this view, and all that comes with it

In other words, I had transplant clinic.

*For those of you wondering, this machine is my Sequal Eclipse 2 portable O2 concentrator. This is one of my all-time favorite pieces of equipment. It's (relatively) lightweight, it's on wheels, it has either pulse or continuous flow, and if it starts to run out all you have to do is plug it into the nearest outlet or switch out the battery. I have portable tanks too, esp. for working out or things that involve a lot of outdoor walking, but this machine is FANTASTIC for overnight trips, airplanes (FAA approved), and marathon appointment days at the hospital.

Not a whole lot to report. I apparently still need new lungs, and they are apparently still working on making that happen, hopefully sooner rather than later. I am starting IVs again today, but only one since I'm on inhaled TOBI already and we're going to hold off on IV tobra for a while. I did another 6MW test and dropped a couple hundred feet to around 1600, but I guess that's still not all that bad, especially considering that I'm in the middle of yet another exacerbation.

Um, yeah, this is my 3rd round of IVs for 2010, in case you're keeping score. And you know I hate useless comparisons, but it looks like 2010 is on track to be every bit as ridiculous IV wise as 2009, if not more so. Clearly I'm an IV junkie at this point and should be in some sort of 12-step program -- just so long as step 1 involves new lungs!

Anyway, IV madness aside, today really wasn't too overwhelming. I'm feeling more and more secure in my transplant team, and they've been very forthcoming and honest about where I stand on the list and what my options are. I know at this point in the game it's all about patience and just trying to live as much as possible until those perfect lungs come along. And I'm really hoping that the IVs I'm starting today will help with that too. Because let's be honest, it's a hell of a lot easier to be patient when you're not choking on your own breath half the time. Or maybe that's just my personal opinion.

Then again, coming home to a (snow-soaked) shorkie makes it a little easier too:

Much love for a wonderful weekend, beautiful people.

Personal Health Update

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


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

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

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

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

Much love and goodnight, beautiful people.

Couch Confessions

Picture, if you will dear readers, a quiet evening at home in a cozy, downtown New York apartment. A cup of tea, maybe, and the faint scent of a home-cooked dinner still lingering in the air. Imagine a young woman, sleepily lounging on the sofa, a book open in her lap and a contented shorkie puppy nuzzled close to her curled up legs, as nearby her mother sits working the New York Times crossword. Enchanted by this comfortable scene and the knowledge that his favorite people are close at hand (er, make that paw), the shorkie lifts his muppet-like head and gives the puppy equivalent of a smile. He resettles himself, laying his head carefully across the young woman's feet, and gives a deep, long, and rather loud sigh . . .

. . . at which point he is promptly kicked off the couch.

Okay, look, I know what you're thinking. This is bad. I mean seriously, what kind of dog owner kicks her sweet, adorable, loving puppy off of the couch for something as innocent as a sigh? Surely there aren't actually people out there cruel enough to pull a stunt like that, and if there are then such people are most likely out lurking in dark alleys and searching for small kittens to torture, not sitting at home drinking chamomile tea and reading David Sedaris. (Actually, on second thought, such people probably do read David Sedaris, most likely in unhealthily large quantities. But I'm sure they do it in far less idyllic settings.) In short, I'm sure most of you find the idea of interrupting a dog's sleep and forcing him from his comfy nest because of a simple sigh to be a pretty disgusting turn of events, as well you should. And I assure you, it was.

But in my defense, I happen to have a very low couch. And I didn't really so much kick him off as I did nudge him to the edge with my foot, at which point, sensing he was no longer welcome, Sampson jumped off of his own volition. He certainly wasn't hurt, and he frankly didn't seem all that sad. In fact, he seemed angry, and for good reason. He favored me with rather scornful look (punctuated by a derisive snort most often reserved for the rare occasions when he finds his water bowl empty or is denied a treat before bedtime -- universal shorkie code for "you should be ashamed of yourself"), and promptly stalked off to greener pastures (i.e., the warm spot near my window heaters). I, on the other hand, was left on the couch, fully aware of the ridiculousness of my actions and forced, at last, to face what has become an undeniable, if slightly disturbing, truth:

I have lung envy.

Okay, if I'm honest, I'd have to admit that this isn't really a new development. For years I have watched with awe as my friends performed simple, everyday actions like laughing, climbing stairs, yawning, and yes, sighing with what seemed to me to be an almost ridiculous lack of effort. "Is laughing even fun when you get to do it without thinking?" I wondered, marveling at the force of their eruptions and waiting in vain for the coughing fit I felt sure they would eventually experience. "Where's the sense of triumph?" I asked again, as a friend blew out all 26 flaming candles on her cake without so much as a hint of exertion. "Surely these people are missing the true meaning of climbing this hill," I consoled myself through gritted teeth as the rest of the group tromped ahead to the concert venue, assuring me that they would save seats as they gallantly pulled the heavy picnic basket out of my grasp as though it were nothing. And so I continued up the steep incline, slowly making my way toward my friends' fading voices, periodically stopping to appreciate the beautiful Colorado mountains in the distance and the lovely wild flowers -- before I was forced to spit among their blooms. True meaning, indeed.

It's only been recently, though, that I've actually found myself jealous of other people's lungs. The other day, for example, I caught myself staring at a young child who was throwing a tantrum. Not just looking over with a shake of my head and a sympathetic glance at the exhausted mother, mind you, but full-on, open-mouthed staring for a good minute or so. This was not because I disapproved of the child's behavior; it was the sheer intensity of his screams and wails that caught my attention. Because seriously, how does a boy of five, who probably weighs 50 pounds soaking wet, manage to sustain a perfect exhalation for well over 30 seconds? And so I stood, eyes wide in sheer admiration for this behaviorally challenged but perfectly healthy little boy, until the faint hiss of my O2 tank brought me back to reality.

Please don't get me wrong. I'm obviously not saying that I want everyone else to have lung disease, too. I would, of course, prefer that nobody have lung disease, even if it means the world will have to put up with a few more wailing toddlers (or, worse yet, wailing adults, because I have to admit that I've been to a few karaoke bars where, after an hour or two, the idea of widespread lung damage doesn't seem like such a horrible thing). And most of the time I'm able to keep my envy in check, at least to the point where I can appreciate the long sighs and giggles of others and hope that one day soon I can join in the chorus. Without coughing, of course.

In the meantime, though, I guess I owe my puppy (and his beautiful, healthy lungs) an apology. Don't worry -- I made it up to him with an extra long belly rub, during which he decided to press his luck and let out several sighs and snorts of varying intensity. He even punctuated his performance by sneezing on my hand, which I guess he thought was a fitting revenge for earlier events. But I took it all with good humor, and held tight to an image of Sammy and I together again on the couch, sighing in perfect unison as we contemplate the beauty of a perfect New York evening with perfect lungs.

My Day: A CF Picturebook

Chapter 1: Lazy Morning
(Yes, he sleeps on his back. No, I'm not kidding.)

Chapter 2: IV Afternoon
(Alternative titles for this blog definitely included "Track Marks: Confessions of an IV Junkie." And in case you're counting, this makes 8 times this year.)

Chapter 3: Gyrotonics Evening
(Bad picture, good exercise. You can't really see here, but I had 40 lbs of weight going for each leg. Which we followed by full body squats, lunges, and some other major thigh and quad workouts. I had a lot of extra energy and a lot of motivation - you'll see why in a minute.)

Chapter 4: Bright-Light Night*
(For my transplant friends: yes, this is a FAKE tree. Beautiful, yes. Real, no.)

*Okay, this isn't quite a footnote, but still: thanks go to Victor for the grammar lesson.

Oh yeah, and in between all of that I kinda, sorta, maybe had a dry run for lungs. You know, the usual.

Stay well, my wonderful friends.

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.

Um, Can I Get a "Woot, Woot"?

As some of you might know (and others might have guessed from reading this blog) 2009 has been kind of a rough year on the infection front lines for me. In fact, as of September -- when I was bored and passing time during my fourth hospital stay in as many weeks -- I realized that May has been the ONLY month of 2009 when I haven't been on IVs. Every single other month has been at least partially filled with PICCs and ports and eclipse balls and gravity drips. It's a pretty ridiculous record, even considering that I've been building up to it for a couple of years (5 rounds of IVs in 2008, and at least 3 or 4 in 2007), and I was starting to think that nothing could break what looked to be a pretty consistent cycle.

Until now, that is.

I'm pleased to announce that October is right on track to become the second IV-free month of 2009! (Okay, fine, I technically ended my last run of IVs on Oct. 1st, which means there was one day or partial overlap, but leaving that silly little fact aside, and assuming I can stay healthy for a mere 3 more days, I'm going to go ahead and score this one as a win.) Granted, it's come with its own sets of ups and downs (and clots), plus a couple of rounds of some good old-fashioned oral antibiotics to help me through, but sometimes that's just life. And frankly I'm about ready to go out trick-or-treating this year dressed up as a big gold star -- a gift from me to my lungs for holding out this long and proving, once again, that they love nothing more than a challenge.

Of course, the addition of gyrotonics to my exercise lineup (religiously twice a week for an hour each session) might also have had something to do with it. I've also begun practicing meditation and deep breathing at least once a week, and that may have helped too in keeping my lungs open and (relatively) healthy. Honestly, those two things are the only part of my routine that's really changed, so I can't discount either as a factor. And interestingly, it's not that I haven't developed the same grossly productive cough that normally drives me towards IVs, because I have. But somehow I seem more able to get the mucus up and out this time around, and as a consequence I breathe better and deeper, even if it's just for those few hours in between airway clearance treatments. Also my appetite and energy level have been more less holding steady despite the cough increase -- another sign that my body might be getting stronger even as my lungs continue to struggle?

I don't know, and to be perfectly frank right now I don't want to overthink the cause. I just want to gloat and enjoy the fact that I am almost 31 WHOLE DAYS without an IV infusion. And in the middle of cold/flu season too.

Seriously, guys, I wasn't kidding . . . can I get a "woot, woot" please?

Anyway, in celebration of this fantastic accomplishment (and because I kind of want to wait to share some of my deeper musings for another post), I've decided to torture you all with some ridiculously random scenes from my apartment on this gorgeous, post-meditation, slightly rainy, beginning of fall, IV-free day. Enjoy.

view of TriBeCa from my 18th-story window

charcoal drawing (based loosely on above view)

the real star of this blog: sampson (aka "sammybear")

I'm off to walk Sam as part of my participation in "Courtney's Challenge" now that there's finally a break in the rain!

To My Darling Sampson

Hey Sammybear, it's your mama writing. I'm pretty sure you haven't learned how to read or use a computer in my absence (although if you have, MAJOR props go to grandma for her puppy-training skills), but I still just couldn't resist the chance to send you a message.

Now before you even say it, I know I'm in the doghouse (yes, pun intended) for my recent extended absence. I know that being gone for 5 days and then coming home for one ridiculous night before leaving AGAIN for another week is hardly good puppy-mom etiquette. And while I know you're enjoying having both your grandma and grandad in town for a while plus extended visits with Aunt Erin, I also realize that it just plain sucks when your best friend and playmate goes totally AWOL. You're such a sweet puppy, Sam (random rocket-science experiments aside), and I'm so sorry that I keep having to leave you.

The problem this time, just so you know, was the port. You know that thing in my arm that means the nurses have to come once a month and you get to root around in their bags for fun things to chew on? Yeah, well while you're off snacking on rubber gloves and stethoscopes, the nurse is busy taking care of my port-a-cath, a permanent IV line running from my arm to my chest which has now become infected. So on Tuesday when they sent me home because my lung infection seemed under control, they had no idea that I was going to crash very suddenly overnight because of a full-on systemic infection from the line. Neither did I, and of course, neither did you. You were just happy, like any good dog would be, to have your rightful human home and back where she belongs.

And speaking of back, Sammy, I really am. As in, back in the EXACT SAME ROOM. I wasn't even gone 24 hours, so they managed to put me right back where I came from, which is nice because it kind of feels a little more homey. Only not really homey because, of course, you're not here. (Note to self: speak to hospital about establishing designated "shorkie visiting hours.") But yeah, anyway, back to why I won't be home sooner . . .

See, once they decided my port was infected yesterday, they sent me to have it taken out. So I went down to the procedure room and got all numbed up with lidocaine and they opened up my arm and started to remove the port. Sounds pretty simple right? Pop out port, pull out catheter, sew up patient. Granted, it's not quite as easy as it sounds, I'm sure, but still, none of us were anticipating any problems.

But then again, it is your mama we're talking about, Sammy, so maybe we should have been better prepared for total ridiculousness.

Step 1 went fine - the port popped out no problem. Step 2, on the other hand, not so much. The surgeon tried to pull out the catheter and I told him I felt a pain in my back, so he stopped. When he stopped, the catheter literally sprang back into my vein, sort of like a vacuum cord when you hit the "automatic retract" button. Weird. Okay then, so he tried again. Same thing. Seriously, the thing was stuck. Solution? Tuck the port back into the arm and proceed directly to step 3 (sew up patient), and then schedule port removal in the actual OR for the following day. And I wasn't too upset about it. After all, if I'd been happily nesting in some place for 9 years, I probably wouldn't want to leave either.

So today I had surgery in the OR to get my port removed, sort of like when you had surgery to get your . . . well, you remember your surgery, Sampson. Anyway, unlike you, I was able to remain awake for my surgery, but I was given some fun sedative drugs that made me nice and talkative to the surgeons. This time the plan was a bit more complex: open up arm even farther, remove port, try again to remove catheter, if that fails, slide larger catheter up around current catheter in attempt to gently dislodge catheter from vein, sew up patient.

Well, they tried Sammybear, but it still didn't happen. Turns out this baby is stuck to my vein with some serious scar tissue way up in my shoulder, and the only way to remove it would be through full on surgery (sorta like what you had) only no one wants to do that to me because of the risks associated with putting a CFer on the vent. So I'm kinda stuck for now with an infected catheter in my system (they did, interestingly, remove the actual port -- just snipped it off and put something on the catheter to keep it from sliding into the vein). The good news is that the infection is strep, not staph or pseudo, so it's very treatable and I'm already responding to the additional antibiotic they've started me on to attack the bug. So the infection as it stands now isn't so much dangerous. The bad news is that they can only use this antibiotic for 4-6 weeks, and after that they'll take more blood cultures. Since the catheter is still in there, though, it's likely that the infection will reoccur, in which case we're either going to have to decide how to treat it (we could alternate antibiotics, maybe) or go ahead with the removal. If I can somehow deal with this until transplant then they should be able to just remove the catheter once they're already inside there. Fun, fun, huh Sam?

Anyway, in the meantime I'm getting meds through a lame-old peripheral IV line in my hand. I've already blown one, and my left arm is out of commission until it heals from surgery in a couple of days, so let's hope they can find enough veins in my right arm! You'd have fun with me, Sammy, I have tubes everywhere! On Tuesday, once they're sure the infection is under control for now, they're going to give me an old-fashioned PICC line so that I can keep doing these IVs without continuing to blow veins left and right. And the good news is, once the PICC is placed then I can FINALLY get home to you! I know you can barely contain your little puppy self with all the excitement!

As for the future of the port (and the fun nurses with their magic bags of chew toys), well, I may or may not get a new one. They don't want to put a new one in if the old one is going to be a continued source of infection because it would just infect the new port (sort of like why they do double-lung transplants in CFers). So if in 6 weeks or so after I'm done with all the IVs the blood cultures come back clear and they think the old catheter is clear of infection, I can get a new line placed pre-tx. Otherwise, no dice. And they also seem to think I'll be transplanted sooner rather than later at this point, so it may not even be a major issue, since all ports would have to come out during transplant anyway.

So that's the story, Sammybear. I miss you madly, but hopefully now that we finally have this a little more figured out I'll be able to come home to you a much happier, healthier, and spunkier Piper.

And I'm sure you're already plotting some creative ways to keep me busy.

Logistically Speaking

Have you ever noticed how sometimes in life things just work out beautifully with absolutely no advance planning?

Like that Sunday 10 months ago when I was pulled from a nap by my darling sister's phone call and the simple phrase: "Get up and get dressed because I think I've found your future mate." Not always the most welcome words in the world when you're lying there with smeared mascara and bedhead, but as it turns out, 30 minutes later I was standing before a 4-month-old Sampson, who was deftly attempting to demonstrate his unbelievable cuteness by chewing on my sister's fingers. Okay, fine, so maybe biting isn't a preferred human method of flirting (although maybe it should be?) but it definitely worked on me -- hook, line, and life-changing sinker. And while I never expected to bring home a puppy that afternoon (and in fact had vowed never to have anything resembling a shih-tzu after a rather traumatizing run in with my childhood nanny's blind, deaf, and very snarky "puppy"), I couldn't be happier with the long-term results. No planning, no advance warning, and possibly the best outcome ever.

That moment aside, though, I've learned that there are certain experiences in life that DO require preparation. I'll be the first to admit that I've sometimes had to learn this lesson the hard way -- such as the time I failed to prepare at all for a science test in 9th grade and became quite possibly the first cystic in history to get a nearly failing grade on questions about the "biology of human organs" (oh, the irony!). Or that decision I made to wait until the very last night of the very last day of my college experience to even try and pack up my rather large bedroom and everything else I'd accumulated over two years of living with the best housemates ever. Good housemates, yes. Useful assistant packers in a crises, not so much. In other words, I've had a few examples of poor planning in my lifetime, and I hope I've learned from them.

And then along came transplant.

Okay, I am a lot of things, but (lousy grade on 9th grade Bio test notwithstanding), I am generally NOT stupid. So it's not as though I was expecting transplant to be something I could waltz right into with zero prep work or planning and wake up 8-12 hours later with new lungs, new breath, and everything totally organized to start my new life. And any delusions of simplicity I actually might have had in the beginning were quickly (and rightfully) shattered by my wonderful but very straight-talking transplant team. I was told I would need to attend educational seminars, schedule and complete all "routine maintenance" health appointments (eye doctors, dentists, etc) and immunizations AND receive from each doctor a letter of clearance, organize my support team and living situation to be ready for post-transplant living, and of course work on gaining weight and maintaining my exercise routine to be as healthy as possible for the actual surgery. This, of course, in addition to the three full days of outpatient testing I completed in August 2008, many of which I have subsequently repeated just so that everything is as up to date as possible.

And when you think about it, that's a lot of advance planning for a surgery that you can't really plan AROUND at all. In other words, I can't plan when the call will come. I can't plan which of the three amazing surgeons at my center will be on-call the day/night I get lungs. I can't plan to be back on my feet or back at work on any specific date. I can't tell my housekeeper the dates when she'll have to take Sampson in advance, and in fact I can't even tell her how long she'll have to keep my beautiful boy, since I have no way to plan how long I'll be in the hospital. It's as though the lack of ability to plan has mysteriously morphed into a compulsive need to double-plan just so everyone's as prepared for unplanned chaos as possible.

Um, yeah. It's really, really fun and exciting over at my house right now, let me tell you. Fun, exciting, and relaxing.

But okay, fine, I can live with a little chaos. Just not too much, which means that, having finished the first list of "planning to-dos" (pause for a major pat on the back here) given to me by my transplant team, I'm moving on to my own personal list. And I'm suddenly discovering that there's still a LOT to be done. Over the past week, in the frenzy of being listed, I've had to come up with ways to notify old friends -- some of whom I'm not really in touch with much anymore but know would want to be updated about something this major -- about the transplant, put together a ready-made listserve of email address for people (family, close friends, etc) who want to be notified of things as they happen once the call comes, and set up a place (probably a website of sorts) for people who just want the more occasional updates to be able to find and share information during the surgery and recovery. I've also had to consider what I want to bring with me to the hospital (for my stay that could be anywhere from 8 days to, well, as long as it takes), and what my family might want/need in the waiting room. I need to plan how I can best stay active and engaged and social while on the list without wearing myself out and over extending, and I have to make sure everyone knows that I might have to drop these commitments at the drop of a hat to go get the transplant. I've most recently moved on to planning out tough conversations, including finishing up my advance directive and other things that, as a lawyer, I just can't not think about. And finally I'm working on a personal goal of being able to walk 2.5 miles at 4 MPH without stopping (or dying) at the time I get called for surgery. Because a wise friend of mine once said "if you walk into a transplant, you'll walk out of it." And I figure she ought to know, since she walked upright into the O.R. before her double-lung and liver transplant. Yowza.

I gotta admit, I kinda wish finding new lungs could be a little more like finding my dog. I mean, how awesome would it be to be peacefully dozing on a fall weekend and have my sister call up with an adorable (and feisty!) pair of perfect new lungs for me? But I have a strange feeling that's not how it's gonna work out this time -- and if I do get that call, I think I might have to commit my wonderful sister, so that wouldn't be good either.

But if I'm really truly honest -- and when am I not? -- I have to admit that there's a part of this process that is actually kind of fun and exciting (in a very "man, I wish I didn't have to do this" kind of way). I'm learning a lot about myself and my family, I'm reconnecting with some really old friends, I'm getting to see first hand just how wonderful all these people in my life who have come out of the wordwork -- in fact, sometimes out of the pretty distant past -- to support me truly are, and I'm pushing myself in ways I didn't even know I could be pushed.

In other words, I think I'll have to wait, and plan, and deal with the uncertainty of not being able to control everything when it comes to the biology of lung disease and human organ transplant -- and hope that at least this time around I can earn a passing grade!

Rocket Man

My household currently consists of three inhabitants: me (obviously), my shih-tzu/yorkie mix (aka "shorkie") puppy Sampson, and my amazing mother, who has basically abandoned her life in CO (and my long-suffering father) to come live and stay with me in New York before, during, and immediately after the transplant. All this so that I didn't have to choose between my doctors here, who I love, and the option of relocating my life temporarily back to Denver in order to have full-time familial care post-transplant. Seriously, how lucky am I?

(And yes, for those of you wondering, my father gets out here as often as he can, and my sister lives here already, so we're quickly becoming a cross-country family. On the plus side, I am REALLY looking forward to some of the incredible trips we're going to be able to take post-transplant recovery using all those frequent flyer miles!)

Anyway, back to the point of this post, which is that while there are three inhabitants of my apartment right now, I am, to the best of my personal knowledge, the only one of those three who actually has cystic fibrosis. I can say this with relative certainty because my mother has actually had genetic testing (she's a carrier, obviously), and my puppy . . . well, let's just say he hasn't demonstrated any sort of poor growth issues yet. Seriously, let's face the facts: he's a 20 lbs shih-tzu/yorkie -- there's just NO WAY that dog is pancreatic insufficient. That, when coupled with his complete lack of a cough (I'll admit I'm discounting that time he swallowed an entire "turkey disk" dog treat whole and had to cough it back up -- twice. I just really don't think that counts as a "productive" cough by the CF definition) leads me to the conclusion that my puppy most likely does NOT have CF. And as a CF-free dog, he has no need for digestive enzymes, the vest, nebulizer cups, or Xopenex inhalers. Or at least, you know, that's my humble opinion anyway.

Yeah, try telling him that.

Not long after I got Sammy I noticed he had a slight obsession with my treatment time. I was frankly expecting the sight/sound of a mechanical vest and noisy little pari ultra compressor to freak out my little guy, who at that point had already demonstrated his complete aversion to vacuums, thunderstorms, and even the terrifying sound of my tiny New York style dishwasher. So imagine my surprise when, night one, this puppy of mine comes right up to my vibrating vest, sniffs around a bit, and immediately curls up right next to it, head resting on the "box" throughout my entire treatment. This developed into a routine that I found straight up adorable . . . until the day when it evolved from cute little puppy massage bed into a "let's chew the power cord" game. Seriously? Thankfully I caught the change early, and the problem was solved with a little bit of black electrical tape.

My dog's obsession with CF paraphernalia has, unfortunately, proved much harder to fix. In the past year, Sammy has -- despite my most diligent efforts -- chewed up three neb cups, one O2 "connector" for extension tubing, and (perhaps most disturbingly) an entire box of rubber gloves he found in the bag of a naively unsuspecting homecare nurse. Brilliant work, puppy of mine.

More recently I reported to some of my friends that I had pried open my dog's mouth to find inside . . . a Pancrease MT-20. Apparently, my puppy had gotten ahold of an entire bottle of enzymes, opened them, and found them to be at least enough to his liking that there were several dismantled enzymes and tiny balls scattered across the floor. The remaining, uneaten enzymes were unceremoniously deposited nearby, molded tightly into a little ball formed by dog spit and half-dissolved enzyme coating. It was, in a word, disgusting. (Another word might be "messy.") A quick call to the vet, however, revealed that they do in fact make doggy enzymes that are not so different from our own, and that the beloved shorkie would be just fine. And he was fine -- his stools were the pride of the dog run for several days due to their intense firmness and easy clean up -- except for his still uncured obsession.

Flash forward a couple of months to tonight. I'm relaxing in the living room, my mother has gone down to Whole Foods market to get us some yummy ingredients for dinner, and the evil (Um, I mean sweet and adorable) shorkie was, I believed, resting quietly in his bed. His bed, by the way, also happens to be in my room. So I'm happily reading my book, minding my own non-trouble-making business, when suddenly I hear what sounds like a rocket ship taking off from my room. Granted, there was no doubt that this must have been a small rocket ship, but I'm not kidding when I say there was at least 30 seconds worth of ignition, turbo charge, and blast off. And, seeing as how there are NO rocket ships of any size in my room (or elsewhere in my apartment, for that matter) and the only things I have that even might RESEMBLE rocket ships involve tanks filled with highly combustible gas, I was probably justified in being a little freaked out.

My fears were magnified by what can only be described as the fastest shorkie on the face of the planet making a direct beeline OUT of my room, where he promptly took a flying leap onto my lap. Let me just say, having a terrified puppy come storming out of your room, from which NASA appears to be running mini-scale flight tests, is really just NOT a comforting sign. True, it's better than having an injured puppy, or a puppy riding aboard an out-of-control oxygen tank (both of these seemed like viable alternatives in the moment), but it's still just. not. good.

So after a perplexing visit into my apparently still-intact and pretty much untouched room, I decided to let the only eyewitness show me exactly what happened. I coaxed the shivering Sammy back into the room, only to notice that he immediately: 1) sniffed the air (which even I could tell had an odd smell to it), and 2) ran quickly to the edge of the bed, peered under it, and then beat a hasty retreat back behind my legs, as any good little mama's boy should. So I looked under the bed, and what did I find?

A mini rocket ship.

Sort of.

Well, okay, not at all. But I get how it happened. Want a hint? Because apparently pressurized inhalers can, when properly punctured, actually travel a pretty good distance. At least to halfway under a queen-sized bed. And let me (and Sammy) tell you, they sound darn impressive while doing it.

Exhibit 1: My Xopenex inhaler


Exhibit 2: Extreme close up of the puncture hole now in the inhaler, shaped (suspiciously enough) much like a shorkie tooth mark.


So okay, my dog might not have CF. And he might have a very strange (and seriously uncool) sense of what makes for a good chew toy. But he just might have a future career in NASA, and how many puppies can say that?