Tag Archives: lung transplant

Apr 25 2012

bits and pieces

Today I’ve been in a fair amount of pain. Most of it’s in my torso, but also my joints. I’m back to feeling like this:

It’s just been today, though. This week, in general, I’ve been in more pain than last week, but I’ve also been less tired. It’s a trade-off I’ll deal with. If I continue hurting at this level for a while I’ll talk to the doctor, but my standpoint on this fibromyalgia thing has been to just hang in there until something become intolerable.

Tomorrow Ashley and I are off to Pittsburgh for a transplant check-up. Hopefully everything goes smoothly, though I’m not really worried. She’s doing fantastically well, even now 4.5 years out.

And hopefully tonight, between prepping to leave and getting enough rest, I can squeeze in some time to watch last night’s episode of Jimmy Fallon w/ President Obama. I don’t always agree with some of the things he does or thinks, and I don’t usually agree with his methods. But I love that we have a cool guy working in the Oval Office. I love that he can hang, you know? And from what little I’ve heard during the few seconds I’ve had today to check the news, he killed it last night. I hope he did, and I hope I can make time to watch it.

Jan 24 2012

less than a million breaths away

“I’m talking about the individual US citizen’s fear, the same basic fear that you and I have that everybody has except nobody ever talks about it…Our smallness, our insignificance and mortality, yours and mine, the thing that we all spend all our time not thinking about directly, that we are tiny and at the mercy of large forces and that time is always passing and that every day we’ve lost one more day that will never come back and our childhoods are over and our adolescence and the vigor of youth and soon our adulthood, that everything we see around us all the time is decaying and passing, it’s all passing away, and so are we, so am I…

And not only that, but everybody who knows me or even knows I exist will die, and everybody who knows those people and might even conceivably have even heard of me will die, and so on, and the gravestones and monuments we spend money to have put in to make sure we’re remembered, these’ll last what – a hundred years? two hundred? – and they’ll crumble, and the grass and insects my decomposition will go to feed will die, and their offspring, or if I’m cremated the trees that are nourished buy my windblown ash will die or get cut down and decay, and my urn will decay, and before maybe three or four generations it will be like I never existed, not only will I have passed away but it will be like I was never here…That everything is on fire, slow fire, and we’re all less than a million breaths away from an oblivion more total than we can even bring ourselves to even try to imagine.”

That’s from David Foster Wallace’s The Pale King, and it hit me rather hard today whilst I was eating lunch alone upstairs at work. First it was the bit about the gravestones, which we think of as the final reminder of our footprints on our place. Then that bit about the slow fire drove it in. Maybe it was the events of last night – really thinking about the other side of organ donation – I don’t know. But when I read this today everything around ceased to matter, to even exist. And all I can think about now is how precious little time we get here, and how even by that measure I get even less precious little time to spend with Ashley…and that comes at the expense of some other family who ended up with even less precious little time with their child than they could ever have brought themselves to even try to imagine.

And I am sad for them. And yet grateful. And while those two emotions mix readily in a person’s heart, it takes the mind significantly more time to catch up.

Apr 7 2011

the sit-in: the long version now that i’m awake enough to tell it

After we walked through a couple of hallways and found ourselves right smack in the middle of the news station’s set, my first impression was one of folding out. Sets are designed to be seen from exactly one side and when seen from any other vantage your brain has to realign itself in cranial space so you can piece together what you’re used to seeing with what you’re currently seeing.

It’s all very weird and metaphysical. Luckily the body simply translates it to a very mild vertigo that goes away in about 3.5 seconds.

Also: news stations are messy. It’s not like empty-fast-food-bags-and-soda-cans messy, it’s that there are so many wires of so many colors and cameras and parts and clipboards and gear and it’s all just seemingly lying around. And you don’t know the names of any of it. So it seems messy though I’m sure it’s about as organized as it can be.(1)

We walked through the main set, through the Saturday set, and through some other set to the very back of the station. The walls were warehouse-industrial. The ceiling with exposed ductwork. Sheets of plywood leaned against the walls. In one corner a camera. At the other end of the hypotenuse, the set we’d seen on the 6 o’clock news.

There was the chair. A folding chair beside it. A rug. A table. A plant. The rest was plywood.

Ashley and I waited towards the back for our turn in the chair. While we waited someone informed us that the camera was broadcasting live to the station’s website. So really before we even knew it, strangers out there may have already seen us.

My mind reeled. This is the boggling thing about television: The people we watch on it every day are experts in seeming unwatched, while the rest of us are keenly, obviously and starkly aware of it. This unearths all manner of heretofore hidden tics and mannerisms, especially of the face. I’d resolved before we left to keep my face in check, and here I’d been watched without ever knowing it.

However, my sense of betrayal was outweighed by my desire to mess with the audience. I wanted to peek around the corner of the camera. Or like pick my nose or something.

But I didn’t.

I few minutes after we arrived, the evening anchorman(2) came back to talk to Ashley. At first I thought he was just saying hey. Ashley told him pretty much right away that she thinks he’s awesome and the conversation turned casual so fast I zoned out for a bit.(3)

When I came to I realized that the dude was sort-of pre-interviewing Ashley. He already knew her name, but now he was asking about her story.

“Which type of transplant did you have?”
“Why did you need new lungs?”
“And cystic fibrosis just kills the lungs over time?”
“How long has it been since your transplant?”
“Any problems over those three-and-a-half years?”
“Do you know anything about your donor?”
“Would you like to?”(4)

He took zero in the way of notes. I was impressed.

After he left is was our turn in the chair. Ashley took the seat of honor and I sat in the folding chair. A some point the lady from Life Connection told us that she’d put us during this time period specifically because of the live segment they’d planned to do. Ashley and I approved of this choice since we’re both obviously so good-looking.

She and I chatted for a while. There was a small tv just behind my field of vision. It was tuned to the CBS station, but no sound was coming out. Once 11PM hit and the news actually started, Ashley began to panic mildly. She seemed fine until you looked at her hands, which were shaking so fast I was surprised I could see them.

And then the weather came on. And then the anchorman came back. And then some sullen camera-dude stepped behind the camera. Someone told Ashley to turn her mike on.

Next thing you know, we’re live. Not from New York and not on Saturday night, but live as live.

She did spectacularly.(5) The anchorman asked his questions, which of course he already knew the answers to from the pre-interview, and Ashley answered him as though she’d done this a million times. She’s funny that way: she gets weirdly nervous about some everyday speech-acts, but then things like this that make most people blanch and puke she handles like a pro.

She even managed to plug an event her student organization is doing this weekend.

Afterwards we got to hang out with most of the evening news crew, each of whom told her that she did really, really well. When it was over we headed home and watched ourselves on the DVR.

Hollywood will be calling any time now, I’m sure of it.

  1. My own personal experience w/r/t wires both in the home and a gigs is that, like 80s hair, there’s no real controlling them. You just hope for the best.
  2. Not Ron Burgundy.
  3. I may or may not have been considering scratching my ass in front of the camera.
  4. At this last question I sort of envisioned an Oprah-type moment in which they bring her donor’s family out from stage left or somewhere and everyone is surprised and tearful thank yous are given all around.
  5. Still can’t find the video online. Grr…
Mar 9 2011

Pittsburgh weeks: prep and Family House

A lot of the pre-visit prep work is simple, but deceptively so. I.e., when we last visited her doctors in November they gave us a forest-crippling amount of paperwork that we had to keep for the next visit.1 On the surface it doesn’t seem tricky to keep a stack of paperwork for four months, right? But you’ve not been fully apprised of two opposing factors of our co-habitative way of life: Ashley tends to collect piles of things over time2 and I have a low tolerance for piles and will occasionally lose a bit of control and said loss of control will sometimes mean that I throw things away that really weren’t meant to be thrown away.

And so if you show up to the labs without the appropriate paperwork because maybe you tossed them away in an early AM fit of pique, they’ll still do the tests but will scowl at you for a while like librarians with hemorrhoids while they dig up the appropriate authorizations from some database.3

Another prep-thing is simply money and food. Gas in particular is expensive4 and this is mostly why we spent the money on getting a decent car. Not only is it reliable but it sucks way less gas than her old car. Food is a little easier to deal with. Since we’re usually staying over at least one night – and sometimes two – we usually buy food at the grocery store here and take it along.5 But there are two places we make a point to eat at: The UPMC cafeteria6 and a diner called Ritter’s. I’ve been a fan of greasy spoons my entire life and let me just say here and now that Ritter’s takes the cake, diner-wise.

One final prep-type thing is Family House, which provides our lodging during our stay and, thankfully, is covered by Ashley’s Medicare. As some of you know, however, being on Medicare seems to be all about making sure you’ve covered the bases. Because if you’ve left one teensy corner of one teensy base open, Medicare will exploit it and make you feel not unlike the bowling pin Daniel Day-Lewis used to bludgeon that kid to death at the end of There Will Be Blood.7

We have to follow a certain routine for authorization at Family House, and especially is Medicare is footing the bill. This isn’t terrible, but mostly because it’s worth dealing with in order to get decent lodging at no cost (to us).

So. Family House.

From the guest handbook:

In 1983, Family House opened its doors to patients and their families providing them with comfortable, affordable surroundings while they underwent specialized hospital treatment at UPMC.

Family House, a non-profit organization, operated by a voluntary Board of Directors, provides a special home away from home for patients and/or families who must travel to Pittsburgh for treatment of serious or life-threatening illnesses.

So basically everyone here is either dealing with or dealing with somebody dealing with some type of ‘serious or life-threatening illness.’ What this can mean is: far-off glances; glazed eyes; traces of tears; strained not-quite-vacant expressions. All from various guests walking the night-time hallways of this place.

What it can also mean is: community; giving; understanding; compassion. Every single person who is staying at a Family House can relate in some aspect or another to what every other person here is going through. More than relate, everyone can empathize with one another.

The only place on earth I know of in which this type of shared-experience empathy exists is halfway houses.

Words like catheter and phlebitis are bandied about like you and I might talk about music. You’d be hard-pressed to throw a stone into the kitchen and not hit someone on serious, high-cost, life-sustaining medication. Or someone who knows someone.

Ashley met a friend years ago because they each stayed at Family House. She’d stayed there a few months before Jamie came in for her transplant and the other people in the Family House told her about Ashley.8 When Ash returned for a check-up, people made sure they met. And they’re still friends, sharing an experience they share because of genetics, modern medicine, and Family House.

Some of the Family Houses look like halfway houses. There are large rooms with large communal-type tables. There are kitchens the size of cooking-show kitchens. There is coffee brewed 24/7/365. There are industrial-grade dishwashers and stoves. There are siderooms with collections of old and obviously-donated and -thumbed-through books. There are large TVs in front of large sofas. Usually occupied by people with large, vacuous eyes. There are overstocked pantries and freezers. There are board games and computer closets. There are donation plaques everywhere.

This is on the piano.

And a basket for donated toiletries. Unused, hopefully

Ashley and I often don’t quite fit in. We carry ourselves in a way that clearly marks us as non-immediately-serious-concern-bearing people. I think people often suspect that we’ll only be here a day or to. I try not to think that they may be jealous.

But they are congenial. They are polite and they will talk to us about their problems with zero provocation. And we will listen because that’s what you do here.

So, that’s today. Tomorrow I’ll talk about the actual labs and appointments. I plan to updates the post throughout the day9 so stop back often.

  1. Most of this is authorizations for various types of lab work.
  2. As in like, things get collected into piles.
  3. One of the X-ray ladies in particular seems severely hemorrhoidal and also possibly menstrual every time we’re there.
  4. And nowadays we’ve gone beyond arm-and-leg expensive to –and-torso-and-gonads expensive.
  5. Grocery stores in Pittsburgh being pricier than those here. Though we do usually stop in Pitt’s store’s snacks aisle for a certain brand of sour-cream-and-onion potato chip that is unavailable in Ohio for some unknowable and likely unsupported purpose of marketing and/or distribution.
  6. UPMC being the University of Pittsburgh Medical Center, a collection of hospitals with individually strange names and über-labyrinthine hallways and a walkway over a street that when you’re on the eastish side of the walkway you’re on the 7th floor and once you reach the westish side – having changed one’s altitude not one iota – you’re now on the 3rd floor, the whole thing giving me a not-quite-but-still-almost vertigo feeling every time. But so anyway what I meant to say is that the hospital cafeteria is truly perfuse with tasty comestible options and view for a pleasant prandial repast.
  7. Sorry. Spoiled my own spoiler alert by being a touch late, footnote-wise. Also, feeling like the bowling pin would cast Medicare at Day-Lewis and you yourself as the bludgeoned-to-shit kid because Medicare makes you feel as though you’ve sown the seeds of your own destruction by not following their rules.
  8. Many people in Family House are long-haul-type stayers, for weeks and months at a time, until someone gets better or…well, doesn’t. The first time I was at one I saw a family basically moving in. The father was carrying an acoustic guitar and somehow to me that suggested long-haul, serious-concern-type concern in a way that nothing else had.
  9. Before Twitter we blogger had a technique called ‘live-blogging.’ This will be that.

Mar 8 2011

pittsburgh weeks

About every four month Ashley and I make a trip to Pittsburgh. The point of Pittsburgh-week is a check-up with her transplant team. It’s actually something I look forward to quite a bit even though there’s always that concern that something’s wrong, like really wrong. And also the part in which we’re basically hanging out in a hospital all day.1

But overall I enjoy it. My goal over the next few days will be to get you to understand a couple of things. Firstly, I know some of you, O Semi-Constant Readers, are more than familiar with CF/Tx procedures. But for the rest of you I’m hoping to provide a glimpse of what these check-ups are like. I’m not talking like Christiane Amapour type reporting, more like Anderson Cooper. Without all the crying.

  1. Though Ashley is quite the connoisseur of hospital cafeterias, and UPMC’s is no slouch.
Sep 24 2010

animam pro anima

‘Aegroto, dum anima est, spes esse dicitur.’
‘For a sick man, it is said that while he has breath/life, there is hope.’
– Cicero, quoted by Erasmus

The etymology of the word life is as complicated as the state/thing it signifies. Every early language upon which English is built – Greek, Latin, and Hebrew – had at least one word that seems at least to signify the thing we call life, and in most cases there is a strong reflection that life is paired with something else.

Greek had zoe which seems to signify the biological sense of life(1). They also had psyche which at times means life and at times means soul and often means both at the same time. The Hebrew had their own word to point to the same mystical pairing. For as much as the Romans stole from the Greeks, they chose to pair their word for life with something else. Their biological sense of life was signified by vita(2), but the more poetic, esoteric sense was given in the word anima(3). Along with signifying a combination of life and soul, anima brought about thoughts of breath, of breathing, of expiration and inspiration.

Hence, the title of this piece: Animam pro anima. A life for a life. This comes to us from the book of Exodus(4) and is usually subservient to the much more commonly quoted phrase that follows it: an eye for an eye.(5) It’s a warning most stern given by an Old Testament God in a passage about rules and judgment.(6)

But to subvert two-thousand years of study and research in a likely vainglorious attempt to make my point(7), I submit one riddle: When is a warning not a warning?

Three years ago today a young person’s life was lost. Out of that darkness, she and her family made a choice. Out of that choice, a life was regained from darkness. E pluribus unum. Out of many, one.

Animam pro anima. A life for a life. A breath for a breath.

When is a warning not a warning? When it is a gift.

This gift, this love, is a gift not just to Ashley. It is a gift to all of us who are touched by her, whose kindness knows no bounds and whose compassion surpasses that of all but one of today’s social, political and religious leaders.(8) She is as lovely as the gift that was given. E unibus pluram. Out of one, many.

For three years Ashley has tried to find the words for the person and the family who gave this gift, this breath. This life. She’s struggled, feeling the pain of their loss even as she brings so much love and joy to those who know her. She can’t reconcile comforting someone whose loss comforts her. She doesn’t know how to say I’m sorry while also saying Thank you.

To her I say: You do this every minute of every day. Every molecule of air that you pull into those lungs that you share in life with someone else is an inspiration for those of us who love you. And in loving us, you comfort the family whose love was not lost but transferred. Like Eva, she had reached the end of her life but not her love.

That’s the true gift: the love and compassion behind that family’s decision.

And this is the gift hidden in the warning that God gave to Moses: A life for life is a phrase left for us to interpret as we will.

The young woman whose life was taken has given so much life and love to you. You, in your graciousness, kindness and humanity, give that life and that love to me and to all of us blessed enough to know you. So it is not merely her and her family who deserves gratitude, but you.

A love for a love.

For understanding animum pro anima, and for teaching it to all of us, I thank you. Because for me, while I have breath/life, there is hope. And you, my love, are no small part of that hope

Life, like breathing, isn’t always easy, as you well know. But love, my friend, is.

And I, I love you.

(9)

  1. Think zoo, zoology, and, most closely, zoism.
  2. Think vital, vitamin.
  3. Think animal, animate, and magnanimous (literally meaning ‘big soul’).
  4. 21: 22-23.
  5. I might suggest that the obvious revulsion and violence implied in the later phrase results in its popularity. It’s difficult for most people to imaging losing a life; it’s easily to visualize losing an eye.
  6. The Ten Commandment are contained the previous chapter.
  7. Which, said point has little or anything to do with the Bible and the trick here will be to see if this little digression pays off.
  8. The Dalia Lama might have her beat. But only maybe.
  9. I feel it important to note that I’m not a religious person, exactly, nor am I a Christian. Nevertheless, the Bible, like the Torah, the Quran, the Upanishads, and the teachings of Buddha, has some really cool things to say about how we should live our lives and how we should treat each other.
Jul 7 2010

it’s just as nice to learn from someone new as it is to share some of what you’ve learned with someone else

That sometimes you’ll wake in the morning feeling a little woozy, as though you slept poorly yet you have no memory of having slept poorly. That, groggy in the shower, you’ll try to mete out the reason and the only thing you can come up with is that maybe you absorb some of her meds through contact, like maybe when you wrap your arms around her all night long maybe minute amounts of tacrolimus(1) and mycophenolate(2) enter your system and, after enough time, build up to levels that make you feel as though you slept in a nest of cobras that themselves slept poorly. That a little pharmacological research will quickly disprove this notion.

That a little research will disprove a lot of your more paranoid notions, to say nothing of your very legitimate concerns. That down-time at the library is better spent researching and reading about cystic fibrosis and lung-transplants than on Facebook. That free access to scientific journals, anatomy-, drug- and pathology-databases, to say nothing of the O.E.D., is so vital it should legitimately be counted as a benefit along the lines of vacation and sick-time. That words like alleles and sequelae and epithelial will cause your forehead to crease to such a degree that people will think you’re actually working when they walk by your desk because no one’s forehead creases to that degree while looking at FailBlog.(3)

That you were lucky to turn out smart enough to be able to understand the kinds of things your research turns up. That carrying around a good article re: the history and an overview of CF in your always-carry-it-with-you backpack is almost as useful as the Swiss Army Knife you always keep in the same backpack. That setting up an RSS feed for cystic fibrosis blogs and news is doubly rewarding; that’s it’s just as nice to learn from someone new as it is to share some of what you’ve learned with someone else.

That the care of a CF patient – indeed, anyone with a terminal illness – is a team effort. That you are only one part of that team, albeit in a sort-of front-line kind of way. That you have developed a close, personal connotation of the word triage. That calling her transplant coordinator to make sure an antibiotic won’t interact negatively with any of her other meds is okay. That having an app on your phone so you can check interactions, pharmacology and counter-indications is really more about you being a geek. That doctors should be trusted…but skeptically. That educating her doctors will seem condescending, but is preferable to living with misdiagnoses. That some members of the team will occasionally feel jealous with your front-line status, and that this is wholly understandable and forgivable. That sometimes you will have to give in on certain things here and there so that the jealousy doesn’t turn to resentment or hostility. That there is no good place for resentment or hostility in a terminal illness.

That you will and should develop a loose connotation with the words terminal illness. That she’s been told since she was very small that she would already be dead, yet here she is. That this is amazing. That second chances are miraculous only if you remember that the second chance is never really over. That you must take care of what chances you have.

That the greatest chance most of us ever take is that chance that love will be lost.

That this is nothing compared to the chance that love will last long after what was loved is lost.

So then that interrupting a conversation with an old friend to give her an insulin shot is okay. That reminding her, even sometimes heavy-handedly, to do her breathing treatments is also okay. That if she’s fallen asleep on the sofa, before you wake her up to go to bed you’ll get her meds ready and a glass of chocolate milk. That the sight of mildew in the bathroom will produce in you severe and howling fantods. That you can grab cleaning supplies from below the sink faster than Jesse James ever once drew a pistol. That you’ll keep an eye on her blood pressure and blood sugar and weight and, yes, even her stool if you must. That the greatest favor you could ever do her is to make her comfortable showing you her bodily fluids.

That on warm days when you kiss her the taste of salt will be overwhelming in the way that sometimes French fries acquired at the drive-thru are overwhelming. That you will love this taste. That, concerned about your own personal medical history including a maternal grandfather who underwent four separate bypasses amid a plethora of other cardio-concerns, you will pretty much eliminate salt from your daily diet so that you can continue kissing her without being fanatically concerned about your own blood pressure and cardio-concerns, to say nothing of dropping dead mid-kiss from a sudden sodium-induced cardiac arrest. That you will be overly paranoid and ridiculous about some things and that in some cases this is okay and in other cases you need to learn to laugh at yourself. That you will start taking care of yourself so that you can take care of her. That this is not a sacrifice.

That none of it is a sacrifice, but that it is compassion.

That really the greatest favor you could ever do her is somehow to do all of this and not make her feel sick. That she is not sick; that all people with a terminal illness simply have an altered definition of the word well.

That you will need help and encouragement in all of this. That there are great people out there who will willingly assist you. That people will tell you that you’re awesome for her. That for the first time in your life, you wish they wouldn’t say that.

That for the first time in your life, this isn’t about you.

  1. The active ingredient in Prograf, an anti-rejection med.
  2. Same as note supra, but in Cellcept, another anti-rejection med.
  3. No disrespect intended.
May 14 2010

checking out, for a while

Obviously, I haven’t been by my own damn blog for a little while now. This doesn’t mean that life has been uninteresting. Far the opposite, what with moving and work and music and, most notably, Ashley and I spent an afternoon in Cleveland with Jamiebug and her husband.

She's the better-looking one, in case you weren't sure.

While we were there, Ashley and Jamie spent almost every conversation talking about life with cystic fibrosis and life after a double-lung transplant. It became quite clear to me that for all the social networks out there, the myriad ways available for communication and community, nothing – simply nothing – beats straight-up, old-fashioned conversation. These lines of lightning aren’t a favored trade for quality faces and eyes.

The two of them sat in the backseat of the car as I drove us to Cleveland Heights talking a mile-a-minute. At one point their conversation led me to realize that, of the first CF-with-cepacia(1) transplant patients done in Pittsburgh, half of the remaining survivors were in my care. And this as I negotiated turns and roadways in decent traffic around University Heights.

I’ve spent a week thinking about that moment, about how the realization of my responsibility put so much weight on me and, in the face of it, I questioned whether I could handle it. In the time that I’ve been with Ashley, I’ve never questioned it: I can handle a lot.

But…can I? Really?

To this point I feel that I’ve shown a decided lack of ability in dealing with my own personal life. I’ve nearly thrown it away on four separate occasions. I have not, as Buddhists would say, lived skillfully. I’ve made poor decisions – which is okay – but then dealt with them poorly – which is not okay. I’ve whined about my station in life – which is okay – but then not done a damn thing to change it – which is not okay.

It’s time to change it.

Six years ago, I graduated with a degree in Creative Writing. Useless, I know. But not useless enough to justify that I haven’t done a damn thing with it. I almost never sit down intending to write anything more than a blog post. Yet I have the power of poetry at my fingertips.

It’s time to use it. It’s time to change the course of my life, not because life is frail, but because life is meant to be lived freely.

So, I’m checking out…for a while. The time I would spent blogging will now be spent writing – real writing. It’s time to do what I know I can do but I’m too afraid to try.

Yet, blogging has been part of my life for many years now. I doubt I can simply leave it behind. Nor do I want to. I just want it less. I want to spent my time treating life responsibly to that the next time I have a hard series of turns to negotiate, I can be less afraid and be more certain that I can, in fact, deal with it.

  1. A nasty-ass bacteria that is spread almost exclusively through the CF population and at one point wiped out about 70% of the cystic in the US. Its proliferation was so dramatic that hospitals initially refused to transplant ceptatic patients because the hospitals couldn’t ensure that it wouldn’t spread to every single cystic patient in the place.
Apr 13 2010

good morning, good morning: a list regarding the five things that totally mystified me before the hour of eight this morning, with concordant elucidation and just a little bit of swearing

1. Ashley, when she sleeps…is perhaps the most beautiful creature on the planet. It’s hard for me not to pull a major creeper routine and watch her. But sometimes I think about how – for 9 hours – she was asleep on an operating table, looking probably just like she looks right now except with her chest cut open and all manner of life-sustaining tubes jutting from her body like a city subway as a small team of men and women I’ve never met removed the set of lungs she was born with, small, mangled and tired from a lifelong battle against cystic fibrosis, and gave her a set of lungs from someone else whom I’ve never met, gave her life and gave me the chance, through the narrowest of chances, a chance I almost missed without even having known I’d missed it, to stand here this morning and be absolutely and impossibly in love with her.

2. The zit inside my nose...for four reasons. A.) How/why does a zit develop inside one’s nose? 2.) It had gone away for an entire week and then returned like a zombie pimple or something. How is this possible? iii.) Also like a zombie, it simply will not die. Logic says I should cut its friggin’ head off, and that’s how I got rid of it for a week. Yet, here it is again. d.) Yet, annoying as it is, it’s also fun to pop because it hurts in a peculiar way, like pulling out a nose- or mustache-hair with a tweezers –  that strange pain that sort-of tickles too and, given a certain stability and personal resolve to inertness, leads to a satisfyingly loud and wet sneeze.

3. The stare-down with the bunny…at the foot of the steps outside my apartment. She didn’t run from me and didn’t look at me with fear. I sat down on a step and for thirty seconds looked into her eyes. It’s times like this that I am proud to be a vegetarian.

4. Taylor Swift’s melodies…are so imaginative. Sure, I’m a little embarrassed at the number of times I’ve listened to ‘Love Story’ and ‘You Belong with Me’ and I’m sure this admission loses me what little hipster cred I have left, but I can’t get past how amazing her vocal lines are. I tell myself I’m trying to learn to write better melodies, but sometimes I stop lying to myself – like this morning – and just admit that I’m a little enamored with her songwriting ability.

5. The guy in the parking lot…who was RIGHT behind me this morning for no reason at all. I wasn’t going slowly or painstakingly searching for the perfect spot, he was just THERE – the grill of his giant SUV taking up almost the entirety of my rearview mirror. As I parked, he parked two spaces down from me and as I was getting out, thinking about how this guy’d been so far up my ass he’d probably seen what I had for lunch yesterday and trying to decide whether to say something, he said, ‘Did you like the way I was driving there?’ (Honestly. He asked me this.) I said, ‘Truth be told, no. I didn’t.’ He said, ‘Yeah, sorry about that.’ Then he half-chuckled and walked off across campus leaving me to wonder 1.) if you realize you’re being a jerk why can’t you stop yourself? II.) why admit that you were being a jerk with a half-hearted apology?, and c.) why isn’t there snow on the ground so I can pelt this butt-munch in the back of the head with a snowball?

Mar 15 2010

breathtaking, but not breathless

Ashley has a small team of doctors who are, in part, purposed with keeping her body from recognizing that the lungs that keep her alive aren’t, in fact, hers. For the most part she goes to a local doctor for regular check-ups and a local clinic for regular blood-work(1) and these places liaise(2) with her transplant team. But every few months they like to bring in her for some Pulmonary Function Tests and a little chat. Sometimes they do a bronchoscopy as well(3) just to make sure she’s doing all right.

Well, to hear it told, she’s doing way better than all right. The docs were so impressed with her Pulmonary Function Tests that they didn’t see the need to do the bronchoscopy, which is good because the procedure itself poses a little risk of infection.

Since I’ve managed to find a fair number of readers from and of the CF and transplant communities, I thought I’d post the results of her PFTs. Those of you who aren’t acclimated to what these are can hop over to my newly created Spirometry page for a clearer understanding.

Test Measurement Percentage
FVC 3.65 Liters 92%
FEV1 3.50 Liters 110%
FEV1/FVC 96%
FEF25-75% 6.53 Liters/second 179%
PEF 9.03 Liters/second 135%

Essentially, what all this means is that Ashley, who at one time in her life had a set of lungs functioning at 15% of what they were expected, is now breathing better and more easily than most of us. Aside from how amazing this is from a medical standpoint, I was happy to learn that she’s doing way better than anyone – including her transplant team – expected of her.

  1. Every few weeks they test and measure medication levels and nutrient levels. Every month or so they measure everything you can imagine. They can probably tell – just by looking at her levels – what she had for dinner three days ago and how much time she’s spent playing Super Mario Brothers. It’s that comprehensive.
  2. I think this is the first time I’ve ever used this verb in writing. Can you say awesome?!
  3. This is exactly what it sounds like. They knock her out and shove a camera into her airways. They also scrap little samples from the bronchial tubes, trachea, and lungs to test for various infections and fungi. She dislikes the feeling after the test, but likes the part where they knock her out and especially the part where she gets a nice turkey sandwich when she regains consciousness.