I Could Be in Pictures

...flash forward to the present...just for a minute. :)

The Children's annual Telethon is coming up this Sunday and I was asked by the PR dept. at Children's to be a part of their publicity for the event. So far we've filmed a piece for the Telethon show (that's on Channel 10 --CBS-- this Saturday, at like 8:00, I tihnk), and today we took still photographs for the Pediatric Health Source ads/ piece that will run in the Dispatch , and air on Channel 10 during their 5:00 news. I'd done a couple photo shoots before, at Children's and for Lifeline of Ohio, but this was the first time I'd actually had a make-up artist do my hair and face and had to sign a "model release form", so I felt really cool. :) It's funny to think that before transplant I would never have considered doing any publicity for the CF stuff because no one knew I even had CF, unless they were Very Special People. But it was nice to have my make-up and hair done and have people tell you that you look great for a solid hour. :) Enjoyable. Hope the photos turn out well...

Catching Up

He'll be furious, he'll demand that she return immediately; he'll suggest (he would never say it outright) that if she becomes exhausted and overwhelmed, if she falls ill again, she will have brought it on herself. And here, of course, is the dilemma: he's entirely right and horrbiyl wrong at the same time. She is better, she is safer, if she rests in Richmond; if she does not speak too much, write too much, feel too much;...and yet she is dying this way...better, really, to face the fin in the water than to live in hiding. - from The Hours , Michael Cunningham

The above is pretty much the description of what it was like to tell people I was going to graduate on time and take classes the second semester of my sophomore year. My report card had arrived over Christmas and was filled with "I"s for all the incompletes I had taken. My goal was to make all those up (18 credit hours) and still stay somewhat on track for my degrees, even though I only went part-time. Most people thought I was nuts. I mean, come on, I could take it easy, right? Take a semester off to catch up, maybe? No can do. There was no way I was being left behind my class if I could help it. So I moved home, became a commuter (and got Rosie, my beautiful first car, that President's Day...1995 Civic EX), and took French 210 (Intermediate French), American Foreign Policy and Brit Lit II (and choir for no credit). I wrote a paper on Milton's Paradise Lost and his portrayal of Satan while I watched the Super Bowl, wrote back due religion papers, took exams in Intro to Poli Sci and other classes while doing the new coursework. I was glad that Mark was a French major, because the syllabus alone was entirely in French, which kind of freaked me out. I had an OK reading comprehension but it wasn't that good!

I turned 20 that semester and had a solo in the Spring Choir Concert, which I enjoyed (it was a old-school musicals theme, so I'm well-suited for that stuff) and did manage to complete all my course work (go me!). I was very, very glad for the arrival of summer, even though I worked at Old Navy that year and worked crazy hours (if I never stock a denim wall again, that is A-OK with me).

Getting outta there...

I had finally made enough progress to go home near mid-November. I had been in the hospital for about a month, the longest I'd ever been in the hospital, period. There was a lot of stuff to bring home - flowers, stuffed animals, a great purple silk bathroom my aunts bought me, a Coach bag (which began my lifelong addiction) - all sorts of stuff from my mom's family (recall the first admission...) and other folks, including my fraternity sisters, Student Government (that year I was chair of the Student Activities Subcommittee), my choir...all sorts of people. You really don't know how much you mean to people until you're almost not there for them anymore, and then woo! You know.

I had already missed all the classes since midterms, so once I got home, I spent the rest of the semester sleeping, attempting to eat, more sleeping...I can't remember if I was on IV drugs or not. I want to say not, because bactrim was a pill. But everything sort of runs together anymore.

The chest tubes were removed (thank God!) when the damage healed itself. For awhile we weren't sure that was going to happen, especially after some ridiculously pompous "I am a surgical intern therefore I rule the world!" guy came in when Mark was visiting one night, telling me that we were going to have to do surgery to repair the holes. He then went on to describe the surgery, in rather intricate detail, which freaked me out pretty good and made Mark want to smash heads together. He didn't do it, but I called my dad, and dad did. :) It was a great moment--he came down to the hospital, got on the phone, and basically told the high-and-mighty intern where to get off. Obviously, I never saw him again, not that I missed him. You could tell that he was one of those surgical kids who just could not wait to get his hands on a scalpel. Baaad move. Really bad move.

The only thing I was going to miss about the hospital were the massages that Sue, the hospital's newly acquired massage therapist, did every day. Dr. M thought that they would be relaxing as well as physically therapeutic, so I got to be the guinea pig for that new idea. I really like being a guinea pig that time. :) Sue is what you would get if you drew the perfect massage therapist - soft hands, soft voice, a good sense of humor. We liked the same kind of music-- Josh Groban, Charlotte Church, the good stuff. She was fantastic and a great friend, too.

Another fun person was Marilyn, the child life specialist. Even though I was bit old for most of the 'child life' stuff, like fingerpainting and what not, she would bring me good books to read, which I liked to do, once I could stay awake long enough to concentrate on them. :)

And I can't leave this story without mentioning Fr. Mark, who, like most people in these pages, you will meet again. He was fantastic, one of the best priests I've ever met. One of fourteen kids who grew up on a farm, Fr. Mark has the right blend of humor, sensitivity, and religious belief to make him an awesome hospital chaplain. Apparently I didn't think too much of his ICU guitar playing, but y'know, I was kind of out of it. I would've been more kind had I been coherent. :) He visited almost every day, gave me Communion once I could eat again. We would talk about his childhood, my childhood, movies, books, God, whatever. He has an incredible sense of humor and is one of those really happy people, but he knows when not to be all Pollyanna smiley (unlike some people).

So there were things I would miss. You get attached to the place when you've spent a whole month there. :) But I was very glad to get home, sleep in my own bed and work on trying to get my life back on track.

Roll call!

We're going to stop the story - very, very briefly - to list/thank/praise some of the awesome people that took part in making sure I was around to tell the story. There is no way I can list everyone bu name because, to be honest, I either a) never knew their names or b) they told me and I instantly forgot. My brain was a wee bit like mush in those days. I mean, come on, cut me a break here.

In the ICU there was, of course, a lot of incredible people. My CF docs (well, OK, all of them but one, Dr. Sheik, who did a great job) were in Orlando at the CF convention (I remember that because they brought me back Disney stuffed animals-- Dr. M brought my an Eeyore with a detachable tail (still have it), and Rita brought me back a Tigger toy), so I was sort of abandoned. :) Not really. Dr. Craenen, an incredible cardiologist, was in the ICU that month, and she was fantastic. I don't know how God makes such smart people, but she must of got an extra portion of brains in the Creation line. A fantastic doctor that did a great job saving me when most people were ready to throw in the towel.

The nurses were also awesome, although I don't remember a lot about them (understandably). I remember the nurses on 4AE a lot better, so I can name some of them - Rita and Cathy (aforementioned), Chris, Gretchen, Beth, Shelia (I think) and a whole bunch of others that I can't remember because there were just a lot of them. The RTs - Linda, etc. - were also great, as well as the whole PT/OT staff, who were working with me and making me work, even when the last thing I wanted to do was get the freakin' checker!! :)

And, of course, Dr. M and all the CF docs, once they came back from Orlando (after that trip, Dr. M got an international pager so we could get her anywhere, anytime. I still have the number- sort of like a charm against bad luck, I guess). I really made them work for their paycheck that month. :)

Two steps forward...

Moving back to 4AE wasn't the most fun I've ever had...the ride seemed interminable, and after roughly 14 days of being flat on my back, sitting up wasn't something I was particularly enjoying, especially with a pulse/ox machine balanced on my lap.

I think I returned to the same room I had been in before, and there was a "welcome back, Emily" sign hung on the privacy curtain that hung before the door (all of the rooms have a curtain you can pull before the door, not sure why, they just do). I wasn't there too long before we started the long process of rehab and all that good stuff.

It is absolutely amazing how your body can completely abandon you so quickly. I couldn't sit up by myself, couldn't go to the bathroom without three or four people's assistance. Course, I didn't even get to a bathroom for about two or three days, until they removed the catheter (which is a really great thing when moving is about the last thing you want to do). But it's really embarrassing to have to hit the call button and say over the darn intercom that you have to go to the bathroom. Consequently, I have no embarrassment about anyone seeing anything anymore, because there's really no point. (Don't take that literally. I mean in a medical sense only thank you.)

Rehab originally consisted of all the good stuff like standing up unassisted. I am not kidding. That's how far we had to go back. Just getting to a standing position was difficult, because I had the chest tube still in (dude, it's so not like ER where it's in for maybe 30 minutes--a few hours on the show--and then poof!), and all the IVs and the fact that my muscles had decided to take permanent vacation. So we would try to get me to sit on the edge of the bed. And then we'd try to stand. Without falling down. After that we moved to walking in place--without falling down (see a pattern?). PT also worked with me on regaining arm strength and range of motion (ROM) by playing Connect Four (I'm not kidding, again) and having me reach for checkers. That could hurt with a chest tube, and buddy, it did. So besides feeling like I was four I was crying like a four-year old because it really, really hurt to raise my arm above my head to get the stupid checker!!

All of this was compounded by the fact that my lung (right) collapsed again (in a different place, however). I was getting back from a bathroom excursion with Rita (also known as the Best Nurse Ever) and Cathy (BNE #2). I got in the bed rather ungracefully (we weren't going for style points, here, people) and felt something sort of pop. Well that's never good. I mentioned this to the nurses. It was, of course, about 8:30, so you know, no one's around, people have gone home for the night. Always a good time to get a pneumothorax! (what 'popping a lung' is technically called) The nurses called people and stayed with me for about an hour, trying to keep me calm, because I could hardly breathe as it was. It was one breath at a time, no talking at all.

Ever read the book Fish Out of Water as a kid? My mom used to read it to me. It's about this kid who buys a goldfish and overfeeds him, so pretty soon there's no place for him to swim, including the local pool. And the fish is having a hard time breathing. That's what a popped lung feels like. (Or that scene in Finding Nemo when Marlin and Dory are flapping around on the dock trying not to be eaten) In order to um, well, knock me out, I guess, I got some lovely drugs and went to sleep...how I did, no idea. Must have been a really good drug.

Someone called my parents and my dad came out, but I didn't notice him until (what seemed like, it could've been) 1 a.m., when everyone piled in my room with Dr. Hogan , the intervention specialist (did a lot of PICCs on me when I was younger, great doc) reinflated my lung with yet another chest tube!! Woohoo! And I'm a side sleeper, too, so I totally wasn't doing that. I was laying flat on my back as usual.

Therapy continued...I was put on a TPN/ lipids bag to help me gain weight. These puppies have like 7000 calories in them (or something outrageous), cost an arm and a leg, and sure don't take like chicken (or much of anything). But it could run all the time, so I was "eating" 24/7. Lots of fun, let me tell you.

In rehab I eventually progressed to sitting in a chair, which was painful. Yes, sitting upright is painful when you haven't done it. They would ask me to do it for 5 minutes, and then I'd have to nap for almost an hour or so. It was horrible. It gradually got longer. It was not a lot of fun, because we aren't talking a cushy chair or a nice rocker. We're talking about a lightly (very lightly) padded chair where you sat upright and that was it. Not fun. I mean, I'm practicing sitting here, people.

There were still, however, fun times to be had, before I could get off the floor and go home...

Housekeeping

Some of you have commented that it's hard to leave comments on the blog itself, but you would like to ask questions/ comment, etc. So if you want to, you can email me at:

capchoirgirl@aim.com

Just cut and paste that into your email browser and voila! (or voile, as my brother would say--:) )

Hope to hear from you soon!

ICU psychology

In the words of Julianne (Julia Roberts) in My Best Friend's Wedding "I only minored in psych, you understand. " Well, I didn't even minor in it, but I can share with you some of what goes on in a patient's (well, ok, this patient's) head.

You might assume that if a patient's in a coma, medically-induced or not, that not a whole lot is going on "up there." Well you'd be wrong, at least some of the time, because I was aware, occasionally. I knew that things were happening, I just didn't put them in a real context. For example, I knew that nurses were washing my hair, but I thought I was in some great Caribbean cabana (whilst attached to IVs and such), and not in a hospital room. I knew I was trying to (and succeeding) at pulling out the vent tube, but I thought I was doing it in a club house or something, not actually doing it in the present sense.

OK now this might be a wee bit morbid for some of you, but oh well. It's important. When you're somewhere between life and death (which can be a fine line), you know that you can, at any point, decide to, uh, 'cross over,' to put it euphamistically. But being the stubborn little Irish/German/ Italian girl that I am, I decided to stick it out and make the hard transition back from the lure of 'that' side to actually coming to again and thinking about getting my life back.

Do I remember people talking to me, or anything really specific? Not really. Things become somewhat clearer once I was "brought out" and the vent was pulled, but even then, things are kind of fuzzy. I remember some people coming to visit, people going in and out, stuff like that. I remember feeling like a fish in a fish bowl since the doors of the ICU rooms are sliding glass, like porch doors, and huge. You feel kind of like your bed is an island in all that sterility and machinery. And believe me, there was a lot of machinery.

Weird things hurt when you've laid essentially immobile for 14 odd days. Like your heels, from pressing into the mattress. Your elbows are sore from the same thing. And once you get back to the 'normal' floor, you find out just how quickly your body can totally abandon you if you give it the slightest little break.

Somebody call House

..and try to get me on the show, eh? After you read this post you'll see why.

My sophomore year started that August as a regular year. I was living in Schaaf Hall again, although this time on a sorority floor (of which I was not a part), and I spent the first night trying to ignore the ridiculously random squeaks of the Taboo game buzzer from next door (who, I wondered, plays Taboo at 1 a.m.?). But I loved my room--small, private, with a fantastic view overlooking College Avenue and the quaint houses that lined the street (some of them are gone for a new dorm now, but I digress). It really was a fantastic view--tree-lined street, English cottage-like house. I loved it.

Normalcy sort of went out the door for all of us that year on my brother's sixteenth birthday--September 11. It was, as in most parts of the country, a fantastic Fall day in Bexley. I didn't have class until 12:30, but I was up early to do some work and relax until classes that afternoon. When I stepped in the shower, Katie Couric was asking Speaker of the House Hastert about the budget. When I got out of the shower, a plane had crashed into the World Trade Center, but then we thought it was still a small commuter plan. Ha. But I've written more on that day elsewhere, so I won't dwell on it here. Except to say that Bryan didn't get the birthday dinner he was thinking of that night.

The big event of every Fall was the Homecoming concert--well, at least if you were in choir, like me. And we were doing some awesome pieces. I sang Alto II (and was the Secretary of Women's Chorus), so I took my choral duties very seriously (always!). No I had noticed that almost everyone in the choir (and campus, for that matter) had caught some sort of early flu/cold/whatever, and of course when I got it, I thought, 'eh, I'll ride the wave.' Not a big complainer, me. Unless something seriously went amiss, I would deal. Especially since by the time I got it, the concert was like 5 days away and I do not miss concerts. A performance is a performance and I'll be there as long a I can 1) sing and 2) stand. Besides, I'd had worse. I could handle it.

The concert went fine, as always. My parents and Mark were there, so it was nice. Mark was back the next day for Homecoming celebrations and the dance that night. Well by now I was feeling kind of cranky, especially since the concert was over and my adrenaline that had ben keeping me going was depleted. And it was raining and yucky, which didn't help. So Mark and I were not on the best terms by the time we got to the dining hall for the dance that night.

As I tried to sleep that night, I noticed the sharp stabsd of pain in my left shoulder blade that was always a precursor for a) lung issues or b) pancreatitis issues. The next morning I had ascertained 'b', since we had the great ab tenderness and stuff like that. So when Mark came by around 11 or 12 that morning, he had to take me to the ER--a first for our relationship.

I'm sure that no guy is thrilled with the idea of taking his fiance to the ER, but he did pretty well, under the circumstances. I wasn't really thinking about talking at this point, so I told Mark the essential things he needed to know. We spent a good amount of the day in the ER, as always, but by that night I had a room on 4AE, the 'new' CF/pulmonary floor for the older kids, so we aren't subjected to babies crying or little kids having issues. (sometimes this theory worked. Sometimes it didn't.)

And that's where I promptly forget everything until...oh, about 20 days later.

I don't remember Melanie's birthday. I don't remember my family coming to visit after they took her out. And I definitely don't remember the move to the PICU. So you'll have to forgive me on details, because I'm not the best person to ask.

Apparently the cold/flu/bug that was going around Cap was a lot more pernicious than we thought. And no one could figure out what the heck it was. I was even tested for anthrax (this beeing the new, post-9/11 world) and no one could tell what was going on. I was intubated, given a great jugular-vein IV (yay Dracula scars!), a bunch of other IVs (in the wrist...pain!), and a chest tube, since my right lung had collapsed (that may have happened when I tried to pull the vent out one night...and succeeded...don't ask).

It was a long, strange trip. In my mind, I was in a California Beauty Pageant, I was back on campus, I was tangled up in monkey bars on my elementary school playground. I was on a Boy Scout ice fishing trip with some of the boys from elementary school. I mean, seriously. Drugs do strange and wonderful things to you head. But when you're essentially put "on ice" in a drug-induced coma while docs can figure out what strange forces have seized your body, you just go with it. Don't really have a choice.

It was All Saints' Day when I finally "came to", although it wasn't really 'coming to.' It was more like I was off the really really strong drugs and could sort of have a normal sleep/wake cycle. Apparently, I had caught nocardia , a bug so rare that only one other case in the entire world had been documented (some kid in Israel, apparently). And the miracle drug? Bactrim. I'm telling you, always try bactrim. It's a great drug. Saved my life--again.

OK so I was awake and alive, two things we weren't sure was going to happen. I had lost a ton of weight, obviously, yet I was swollen with fluid. My engagement ring was gone, which freaked me out at first, but I'm sure it had to worse for Mark, who had the nurses slip him both that and the sapphire ring he'd gotten me our first Christmas together. They had taken them off so they wouldn't have to cut them off later, should my fingers swell like they did. The rings were in a tiny plastic bag. I can just imagine the deep, sinking sensation he must have felt. We were only nineteen, and here we were, faced with something that most couples don't face until they're much older and drawing retirement and reading AARP magazine every month. He was a trooper, there almost every day, if not every day (I dunno)--if I had known that I would've told him to go home and study! He was a quadruple major, after all. I wouldn't've let his life fall apart even if mine was. But he was there.

Eventually I moved out of the PICU and down to 4AE (again). And what fun was to be had there!

Izzy and Denny and organ donation

OK, if you're not a fan of Grey's Anatomy this post probably won't interest you, but it might, since it has to do with organ donation, which is, after all, the whole point of this blog. So here we go. And if you haven't seen last night's episode you may want to skip this and come back.

For those of you not in the loop: Izzy, one of the surgical interns (Katherine Heigel) has fallen for a heart transplant patient named Denny. He's a bit older than her, but they are a sweet couple. He's already had one call for a heart that didn't work out. Well last night he gets another call that they may have a heart for him. Izzy breaks the news, but as she's doing so she noticed DNR papers that Denny is going to sign. He tells Izzy that if he doesn't get this heart, he doesn't want to wait around for another. He can't go home, he's hooked up to all sorts of machines, including a pump that does the work of his heart and is basically keeping it going (I got a lung tx, not a heart tx, so forgive me if the details are sketchy or whatever). He signs it, which makes Izzy angry.

Things get worse when Burke (the transplant surgeon) goes to harvest and finds out that the heart for Denny is bad because the patient's heart gave out. Fortunately, there's another heart there that would work, but it's been claimed. The only way for Denny to get it is for his numbers to get worse. But they won't...unless Izzy does something. So she tries to disconnect the pump inserted into Denny's abdomen (I think, or soemthing like that. It involves his abdomen) The episode ended with Izzy cutting the cord.

So why am I blogging about this? Well, even if the scenario is a) a bit far-fetched b) totally outside transplant ethics guidelines (which Izzy and Denny both know and acknowledge), it's a great way to raise awareness of organ donation. If you watch this show, you care about Izzy and Denny. You've seen his gradual decline over two seasons, and you can see what a toll the waiting has taken on him. Last night, he tells Izzy, "I believe in Heaven. And it's got to be better than this."

I'll write more about this later when I get to my own tx story, but I can tell you that Denny has a point. There comes a point when you just get sick of waiting. You get frustrated and tired and I didn't even wait that long. But it is scary, especially when you feel that you're getting worse and you start to worry that the call might not come in time (and for a lot of people, it doesn't). That's not a happy feeling. And the only way to get rid of that feeling is to increase the number of donors in the U.S., so that instead of about 18 people dying everyday, waiting, we can get that number to 0.

It's totally do-able. And you can do it right now by clicking the "Lifeline of Ohio" link on the right side of this page. Become an organ donor--it's not hard, you're not going to be using them (OK, a little dark humor there, but it's true!). And you can save someone else's life simply by signing your name to a piece of paper or clicking your mouse to send in a form. So many people can benefit from your decision, including people like me and Denny (well, OK, he's fictional, but you get my point).

And if you want to see what happens to Denny? Watch ABC @ 9:00 tonight for the finale. :)

Love on 5T

All right, I told you at the get-go that this would be about my life with CF, and transplant, and all that stuff. Well I really can't talk about that without bringing the "yucky love stuff" ( My Best Friend's Wedding ) into this. So here we go. But don't worry, there's fun medical stuff in here, too.

First off, I have never been exceedingly experienced in matters of love. I've had two boyfriends in my life, five crushes (two of which became boyfriends), and am the worst flirt this side of Kingdom Come because I am so obvious. Ask anyone who knows me. Really.

But that aside, I met Mark (name's been changed) my freshman year of college. I met him at the Capital/ Muskingum College football game (which was our Homecoming game that year) because I was going to the dance that night with one of my friends from high school, who happened to be Mark's next door neighbor. So Eric (my friend from h.s.) had brought some of his friends along to watch the game. It was a freezing cold day, but we managed to stay for the whole game. I didn't really notice Mark all that much at first, but a few days after the game, he IMed me. (Yes, love in the 21st century...) One thing lead to another, and we agreed to go out on a date together.

I was nervous. First off, I didn't know much about this guy. Second, I had no experience with guys, really. But after telling Mark that in no way would I do anything physical with him, I agreed. We ended up getting food from McGhetto (the McDonald's near campus) and eating it at Wolf Park in Bexley, across from St. Charles' Prep. The date went well--I got my second kiss that night (and since my dad and other relatives read this, we'll stop there :)). We began dating pretty steadily, and by Halloween, we were officially an 'item.'

Now the issue always was, "when do I bring up the CF?" I mean, it's kind of a conversation killer. :-D I think I brought it up about three dates in, because I didn't want to get too far into this and then have him back out. Ever since high school (and rejections from musical choruses and show choir, most likely due to my CF), I had been really, really reticent about telling people about CF. I mean, first of all, it's not really their business. I told people on a "need to know" basis. When I auditioned for college choir, I didn't say a word and got chosen for Women's Chorus. I never told my professors. Hardly any of my friends knew. I liked it that way, because I liked to be judged on who I was, not what my genetic code was. I could do just about anything (at this point) that other people could do, so no pity or making it easy for me. I was going to pull my weight, thank you very much.

Mark, fortunately, was good about it. And the CF existed as sort of a hypothetical for the first two months of our relationship. I was doing OK, my drug regimen was fine, everything was cool. Yeah I was having headaches and joint issues (another common CF complaint), but that was all do-able.

Our relationship progressed quickly. He met my parents and I met his parents on a weekend in November, post-election (whew!). It wasn't until finals week of our freshman year that he actually came into my world at the Resort.

I knew it was pancreatitis again as soon as it began. My parents were coming to take me home, but I knew better. When they arrived, I told them what was up. I turned in my Cultural Pluralism paper (on the experience of Catholics in America), we dropped off my research books at the Bexley Library, then I went home, called clinic, packed a bag, and headed for the Children's ER, where my thoughts were confirmed. One thing about pancreatitis--you never forget what it feels like.

It was a Friday, which meant that Mark was going to visit me on his way home. After getting a lovely corner room on 5T and turning on CNN so we could watch then Gov. Bush and Vice-President Gore on TV with the election results (finally!), I told Dad to call Mark and let him know. This was going to be fun, I thought. I jealously guarded my privacy, and never even let my friends come visit, at first. I never wanted anyone to see me in the hospital, not even my siblings. My parents were OK. But like I said, it had to do with the whole protection of image and how I wanted people to think about me. Eventually I got over this. But I knew that if Mark and I were going to have a long-term relationship, then I had to get him in here, no matter how uncomfortable it was for me.

I was on a happy dilaudid/ phenergan combo when Mark finally arrived later that December night. My dad said later he look absolutely petrified in the elevator. I don't blame him--we're eighteen, this isn't normal. Most 18 year old couples don't spend their Friday nights at Children's. (Although it's so fun!)

My dad left us alone for awhile and Mark sat tentatively on the edge of the bed. "You OK?" he asked.

I nodded languidly. "Oh, I'm great." I pointed to the IV stuff. "Trust me."

He nodded, tried to laugh but didn't quite succeed. The drugs were starting to take effect by now, so I squinted and looked at him, dizzily proclaiming that I saw him in triplicate. I think this scared him just a bit. :) I forget how long he stayed that night--it may have been all night (in fact I think it was). He very good about that and was a real sweetheart. That was when I finally began to feel comfortable with letting someone else into the craziness that was my life. I didn't have to be all Superwoman all the time. It was a nice feeling.

Mark stayed through the weekend and then went home to do some work for his dad. He lived on the other side of the state, in Darke county, so it was about a two-hour drive. I was in the hospital about a week, getting out before Christmas (yay!). I am proud to say I have never spent Christmas in a hospital, thank God.

The rest of my freshman year passed uneventfully. I sang in the chorus of Verdi's Requiem with all the other choir students and Cap's orchestra that April, which was awesome. My family and Mark and Eric came. (this was a supreme sacrifice for my father, since he has no musical background and the Verdi was three hours of Latin!) I started my English and poli sci classes and met some of my favorite professors, Dr. Summers and Dr. Marilley, who were great. That summer I worked at the pool near my house...and Mark and I got engaged.

Yes, OK, it was quick. We hadn't even met at the beginning of this post. But I really felt like he was The One. He was OK with my religious beliefs, my political beliefs (our third date was spent with me converting him to the Republican cause--go me!), and, especially, the CF. I knew that was a hard thing for a lot of people. I had sort of convinced myself that no one was really going to take the "whole package" of me. And I was in love. So in June of that year, we became engaged, with plans to marry after we both finished college in 2004. Unfortunately, my health was about to get a lot more dicey...

"What can you do with an English major?"...

asks a character in the musical Avenue Q . Funny, that's what my mom asked me, too...

I began at Capital University in August, 2000, as a Middle Childhood Education major. It took almost exactly one month for me to change me mind. :)

My friend Liz (also a reader of this blog, so I hope she's not embarrassed at being mentioned!) was co-chair (I think) of Cap's College Republicans that year. Since 2000, as we all remember, was one heck of an Election Year, we were busy with phone banks, lit drops and the like. It was a fantastic introduction into the political world. But that night that really changed my mind was the night of the first Presidential debate.

The Franklin Co. GOP held a debate watching party at the Damon's in Columbus' Arena District, not to far from Capital. Liz and some others, including Branden, were going that night, and I decided what the heck? I didn't have anything else to do, and my roommate was never around, so it wouldn't bother her.

That night, in a dark basement room of Damon's, surrounded by state party leaders (including the governor) and other Republicans (more than I'd ever seen in one place at one time), that I knew I was in the wrong profession. In my EDUC 101 classes, we spent more time talking about "inclusion" (as in, how to word a word problem so it accurately reflected "diversity") than teaching. I didn't like it. I wanted to be a teacher, but I didn't wan to have to read Why Does Sally Have Two Mommies or whatever to my classes. I wanted to be able to teach and not worry about nutty regulations or whatever, and I most definitely did not want to join a union.

That night, aflame with political passion, I called my parents once we got back to campus and told them I was changing my major to Political Science and English Lit--the two things I'd always wanted to do. My family was political, in the sense that all of us kids listened to Rush Limbaugh and we all knew the Speaker of the House, President of the Senate, and other political leaders waaay before most kids our age. We'd been active in following politics since the '92 election (I stitched my first sampler during the Democratic convention). With a Poli Sci/ English major, I figured I could be a political writer, writing speeches and what not...eventually. I wanted to be Sam and Toby on West Wing , except with Peggy Noonan's politics ('course I wanted to be her, too). So second semester, I began that career track.

Of course, not everything went smoothly between that autumn night and January. One morning in September, I got up, showered as usual, and went to dress. But not before running the 10 feet from my Schaaf Hall basement dorm room to the toilets, where I promptly threw up. Thinking that was abnormal, I decided that missing my 9 a.m. Elementary Math class wouldn't hurt. I dashed off an email to my professor and then tried to sleep it off (my preferred method for most things).

No-go, I was getting searing, precisely-located pain in my abdomen, to the left of my sternum, that I'd never had before. So I tried advil. No go--came back up. When I tried to stand up, I couldn't stand up straight. Like I said, I've got a really high pain tolerance, so if I'm complaining, it's big. I decided to try the campus nurse and see what was up.

She was a good nurse, as far as these nurses go, and asked me if I'd ever had this type of pain before, etc., etc. I said no. She said I should go to the ER, and called my father, who worked on Broad Street then, so he wasn't too far from Capital. Grumblingly, he came, muttering that it was probably just stomach flu (we should note that my dad likes ERs as much as George Bush likes terrorists). But then I threw up again, in a trash can on the middle of campus (dad calls that my " Exorcist moment", as we were walking to visitor parking and headed for the Children's ER.

There, blood tests were run, an IV was started, and I was given some anti-emetics--phernergan, drug of champions :). The tests came back relatively quickly, and revealed that I had pancreatitis.

Now you have to understand that that's not that common in CF patients, because typically our pancreases are totally burned out due to infection and clogging of the small ducts in the organ. When you get pancreatitis it demonstrates that your pancreas has become inflamed due to producing too many enzymes or whatever--it's working overtime. So this was, well, odd. But, as Dr. M said, I was the 'strangest case of CF' she had ever seen.

I was in the hospital for about a week, where I was given painkillers and phernergan, and couldn't eat until my amalayse and lipase levels were back to normal, and even then it was liquids/clears, then low-fat. It was a slow progression because it can be very touchy and not an exact science.

I got pancreatitis again in December...but some things had changed, otherwise, since September...

There is Sweet Music Here...

that softer falls
Than petals
From worn roses on the grass.
Or night dews
On still waters
Between walls
of shadowy granite
in a gleaming pass.

--"The Lotus-Eaters", Alfred, Lord Tennyson

One of my favorite poems that sums up how I feel about singing is that one, by Tennyson (of course it helps that I love Tennyson...well, except for Idylls of the King ). Music has always been a major part of my life, starting with when I was about three and sang "Someday My Prince Will Come" in my preschool's version of "Snow White". I've loved to sing since then, and act, when applicable. Music is my art, my therapy, my solstice, a surrender, and a great way to create beautiful art out of black notes dotting a staff.

I sang at SPX, often cantoring our class Masses with my best friends, who also sang, or singing solos. I played Jasmine in Aladdin and Aurora in Sleeping Beauty where I was originally cast as the Witch, because she was the only girl's part with a solo. After a rehearsal or two, the director, a priest from Seton parish in Pickerington, decided that it just wasn't working because I didn't look like a witch-I looked like a princess. So he wrote me a beautiful song about love and being young and in love...it's fantastic, "When I Fall In Love". If anyone out there in blogger land knows Fr. Dave and can get me a copy of this, I would be forever, eternally grateful. I loved that song. By that point, my voice was dropping from my childhood soprano to the more mature Alto I would nurture in high school and in voice lessons.

I took private voice lessons in high school and learned classical singing and a few songs from operas (always ones sung by boys...sigh). My favorite songs to sing in recital were "Send In the Clowns" and "Storybook"--I will never forget singing the later junior year at the high school talent show and having boys whistle when it was over (OK, that could've been because of the dress...it was black, short and sparkly...hey, the character was posing as a bar maid. What more do you want?).

I loved performing, loved the rush I got from being on stage and watching the curtain rise, following the methodical rise and fall of the conductor's baton. I loved hearing my voice run over the intricate parts of the score, which increased as I got older and sang in the All-County and All-State Choirs. In college I was a member of the Women's Chorus, and every year the three choirs of Cap put on Christmas Festival, a two/three hour extravaganza of Christmas music. It is a fantastic experience, matched only by the performance of Verdi's Requiem my freshman year. A 200+ choir and a full orchestra...amazing.

Musis, I have determined, in God's great gift to us, and one that He has blessed me with abundantly. Besides singing I also play the piano, where I play Beethoven, DeBussy, Bach, Mozart and other pieces that evoke romanticism and melancholy. (I'm good at that :) ) I used to play Beethoven's "Moonlight" sonata at home, whenever it rained, because it seemed to compliment rain so beautifully.

AS my lungs because more and more damaged, singing became more difficult, but I neer gave up. Instead, I found solace in hymns, such as:

The King of Love my Shepherd is
Whose goodness fails me never.
I nothing lack if I am his
and He is mine forever.

Perverse and foolish have I strayed
But my dear Lord, He calls me.
And on the shoulder, gently laid
And safely home he brought me.

As transplant grew closer and closer, I couldn't sing that hymn all the way though. The "safely home" part was just a little too true for me. It was the same with "Amazing Grace", ever since Sept. 11.

Through many dangers, toils and snares
I have already come
'Tis grace that's brought me safe thus far
And grace will lead me home.

Singing hymns became part and parcel of trying to get through the rough times. It was amazingly hard, sometimes, to make myself sing those words. But I did. My happiest memories are connected with music--it was at a musical that a man first told me he loved me enough to marry me. I can soone rimagine a life without music than a life without oxygen. Singing is the ultimate release for me...and I do it so much better now!

Best Buddies (avec art!!)

We can't go any further on this blog without talking about the best friends a girl could have....my high school buddies! (OK, this is where some of the boys get embarassed :)).

I met Tiffany in Theater One our freshman year--alphabetical seating (DeArdo, Dulmage...you get the drift). Branden was in class with us, too. At first I think I scared Tiff because I would talk a mile a minute and she didn't know my from Eve, but after we did a few scenes together (and were in Freshman choir together) she became one of my best friends and is, still, today. I love Tiffany--one of her best qualities ins her inability to be (or stay) mad at anyone, and she has the patience of a saint. Really. If she were Catholic I'dput her up for canonization after death just because she is so darn patient. And she has always been there for me. She was a clarinet performance/ music therapy major at Baldwin-Wallace and is going to IU in the fall to get her MFA in Clarinet Performance. She is the best clarinetist ever and will be fantastic!! Hey Tiff, they really were purple, you did say it, and I have witnesses!! :-D (If you don't get it, don't ask)

Amilia Elsea (Milia to us) I also met freshman year, in choir and in bio B. She, like Tiff, was a wee bit scared at first, but once we dissected our frog, "Hercules", and did the infamous Mousetrap Project in Physics the next year, we were buddies for life. She lives near St. Louis now, working in a law firm, so I miss her like mad. Her backyard pool was the site of many a good conversation, as we would paddle around at night looking up at the stars and think Big Important Thoughts. Milia was (is) always good for that. Milia went to college in the Hinterland (OK, Concordia University--WI) and majored in History.

And to both of them: "Zazu, why am I not...loved?"

Andrea is the freaking smartest person I have ever met. Seriously. She's a genius. She's currently doing a Fulbright Scholarship in Germany (something about MRIs, I think....) and is going to IU Indianapolis to do med school and a Ph.D. program in biomedical engineering. Yes, she is a brain. She is also incredibly nice and smart and fun and loves froggies. She is also the author of such immortal statements as "Maybe they [The Muppets] were illegal immigrants!" and "Pregnancy just doesn't jump out at you from the bushes!" And I'm sorry about saying MRIs are the worst test ever, but come on....

Lindsay is currently at Notre Dame doing her Master's in Geology (I think...everyone's advanced degrees mix me all up!) and is, possibly, the second smartest person I know...I hang out with all the brainy types. :) She was a band groupie like me--we didn't play instruments but we were friends with those who did, hence "band groupie." :)

And The Boys. Anyone who knows me has heard me speak of them as a collective--THE BOYS. It's never just one of the other. But here they'll be seperate.

Branden I've actually known since childhood; we were pre-school classmates. But I didn't know that until we were in high school. Branden is fantastically detail oriented, a great political guy, and my in to the political world. We had a lot of good times traipsing around D.C. on CPAC trips and on the campaign trail...even when we got pulled over by the VA highway patrol by the Pentagon....he and his four college roomates senior year at Cap made me laugh and were awesome, especially when it came to threatening revenge on a particularly Evil Roommate (more on her later). Branden is also a Julie Andrews nut. :-D

Tom and I were in French I together freshman year and became friends later on, especially in college. He's at Capital's law school now and is a lot of fun, especially the night we went to Cheesecake Factory and dared him to order a starwberry cheesecake in our favorite accent. :) that was great!! Tom graduated from Notre Dame and was a member of their band.

Sean is also at Cap's law school and we became friends in college, although I knew him in high school. He went to OSU (was he in the band? I don't remember) and is my arch-nemesis during football season because he is a Bungles fan. :)

Troy is another one of "The Boys", but he lives in Sandusky now (booo!) and drives an awesome Acura RSX that I want . :) He was an Engineering Major at OSU and is going back in a year or so to get his Master's. He's the only one of us that grew up on a farm, so we'd go over to his place and usually it would involve picking corn from the fields, if it was summer (and it is the best corn ever!!) or checking out the animals in the barns. It was always fun going to his house. Troy is also the only guy I know who can a) beat me in Monopoly b) cook better than I can (or at least equal to what I can) and c) debate on my level about anything :)

So those are the buddies that I hang out with--they are an incredible support system and we've had some awesome times. :)

Pictures:



The boys: L-R, Tom, Sean, Branden and Troy in Tom's basement after we celebrated Branden's 24th birthday



Tiff, me and Milia celebrating Easter 2006 (the day before) at B.D.'s Mongolian BBQ up at Easton.

Staring into the bowl

That's what I did with food for the next um, six months or so. There wasn't a whole lot of eating. I would cry over a bowl of ice cream because I literally could not imagine eating it. And this wasn't a good thing. I only weighed about 100 pounds (give or take 3) and during the time it took me to adjust to the 3 drug cocktail I was on for the Mac, I went down to about 86 pounds. I couldn't stay awake in class--it is a miracle that I passed anything that six weeks, or even the rest of the year. One day I got up to my alarm and promptly began sobbing because I could ismply not imagine putting one foot in front of the other and getting ready for school. Mom came in and told me that I wasn't going. I was really, really happy to go back to sleep that day.

To give you some insight as to what it felt like...it's called "consumption" for a reason. You are literally consumed. First your weight goes to hell. Then you just have no energy to do anything other than sleep, which you can do in abundance. Eating is just beyond you. The idea of food, any food, is horrible. You can't concentrate on anything because that requires too much effort. Walking through PHS, with my huge backpack, was amazingly difficult. Yet I only missed 4 days of school that year and managed to maintain a decent GPA. I even kept singing in the Sophomore Girls' Choir--that was the year we got a Superior Rating at the state Choir Competition.

The three drugs I was on, morning and night, would continue for about two years...one year after a bronch came back negative for MAC. You really had to be sure you knocked this thing out. Of course, it would come back....my junior year of college, but we were always on the lookout for it after this event. But by then we had other issues, but more on them later.

that summer I used mostly for recuperation. I slept a lot and gradually began to eat again. I gained back the weight, sloooowlly. I've always been a slow weight gainer. But that was tough. And there was damage that I never quite got back. I had had 80% PFTs my freshman year of high school...those numbers were now not gonna happen. But I could return to my normal routine and keep on keepin' on.

And so it went, for the rest of high school. I didn't get any bad infections again, and with the exception of a home IV course (or maybe two), life was uneventful. I chose Capital University for college, intending to be an Education major. Branden, one of my h.s. buddies, was going to Capital, too. So that made it more fun.

And there was a lot of fun...and changes...to be had...

What do Edgar Allen Poe, Elizabeth Seton, and Robert Louis Stevenson have in common...

Give up?
They all had TB and died of it.
Now, what do I sort of have in common with them?
I had TB (the non-contagious type, relax) twice--and lived to tell the tale. :) (Aren't you glad?)

The first time I was 15, a sophomore in h.s. All fall, I had been losing weight, feeling tired and had an increased cough. My PFTs were plunging, but no one could figure out why, as sputum culture after sputum culture came back negative. One of the docs at clinic told us around Thnksgiving that this was "normal CF progression."

Dr. M didn't buy that. I did, until the Sunday morning when I was in my parents' room, watching Meet the Press and getting ready for Mass when I brought up a dime-sized clot of blood into the tissue. Well that just about freaked me out. Now it wasn't like in Moulin Rouge or anything, where it was actually liquid and spotty, but it was more, um, collected. Like solid. Well I crumpled up the tissue and threw away the evidence (and didn't tell my parents until later that day, or the next, I don't remember.) . But I worried about it all day--I too had seen the movies. It didn't look happy.

Well in January Dr. M decided to run some tests, including a test that I am sure is a remnant of the Spanish Inquisition--the pH probe. Never, never, never, ever, doctors that are reading this, make your patients go through this unless it is absolutely necessary. It is the worst test on Planet Earth, and I have had a lot of tests. Well, OK, maybe MRIs are the worst tests on earth. But I digress. A pH probe, for those of you who haven't had the immense pleasure of one, involves sticking, well, a probe (which is about a thick as a pencil, maybe a bit thinner) up your nose, down your throat and into your stomach. Without any numbing agent at all. Or, that first time, any warning of what was going to happen! Let me tell you, not pleasant. And the real bonus? You have to keep it in for 24 hours--and eat normally! Heh! You can't eat normally with what feels like 8 or 10 bee stingers in your throat. So I didn't. I went home and slept it off, which was hard, because you can't even swallow without some pain. Now I have a very high pain threshold, but this just sucked. The goal of the test is to test the acidity of your stomach (Dr. M was trying to see if I had acid reflux, which can lead to lung infections.). I did manage to eat some Taco Bell (I love Taco Bell), which probably didn't help the acidity readings. :)

I was never so happy to get up at 6 a.m. in my entire life, let me tell you! The probe was pulled, and I went up to 5T to await my first brochoscopy, which, let me tell you, is my favorite test ever because you get great drugs to a) put you to sleep, or relax you (I think the goal is relaxation, but I fall asleep) and b) forget the procedure. Fentanyl and versed is the drug combo I get, anyway. And it's great. I love tests where all you have to do is be relaxed and feel your body turn to jell-o. But apparently I am known for talking a blue streak while "under the influence", so if you ever want to know my deepest, darkest secrets, ask Dr. A or Karen if you can come into a bronch with me. :) Bronchs allow docs to do a "lavage" (that is, a clean-out, like a car wash) of saline in your lungs to get better samples than from a regular culture.

The bronch took about an hour and I spent the rest of the day on 5T with my dad, waiting for the drugs to wear off so I was coherent enough to go home. After a few days, Dr.M called and said that it was non-contagious TB (or macrobacterium), which only 4% of the CF populations even gets...lucky me!).

Treating that was a fun, fun thing...more on that in the next post....

Grey's Anatomy in our kitchen...

Doing IVs at home at first sounded nuts. I mean, come on! Me, my parents, messing with strong antibiotics, sterile needles and dressings, and all that goes with IVs, at home? What were they thinking ? They were thinking it would allow me to go to school, save the insurance company money, and teach us some fun new things! (OK, I don't know if the last one was in their minds, but we suuuuure did.)

It was the summer after 8th grade when I had my first home IV course. Children's has a great Home Care service, so we used them. Nurses can come out to the house, someone's on call 24 hours a day if there's a problem, etc. And you get all your supplies and stuff from them. I was only in the hospital for two days or so, so we could make sure I was on the right drug cocktail to treat the current infection. And then, we were home...

It was a few days before Fourth of July, and I remember that because Anne and I were running through her yard with sparklers (which I tried to light at the wrong end and burned my fingers in the process....OK not very smart). We got through, amazingly, about 8 days with the first IV, and then it infiltrated during the Wimbledon Men's Semis. Niiice. If you've never had an IV infilrate (med speak for "decide not to work anymore"), it's not a lot of fun. Lots of swellin at the site as the liquid that's supposed to be going into your vein goes into the surrounding tissue. And to go along with that, pain, of course. So we called homecare and had nurses come out to attempt to get a new line started at our kitchen table. That took, um, a few tries. (I have small veins, what do you want?) And I don't care who you are, there are only so many times you can be poked with needled before you start to cry, especially when you're a fourteen year-old girl. Now I didn't thrash around and act like a little kid or whatever--I was a quiet crier--but dude, that hurt. And when you're small, like I am, those needles get awfully close to bone, especially around your wrist. Eventually a doctor friend of my dad's from college suggested EMLA cream, which is a topic anethestic, so we would use that, but the problem is it can shrink the veins. But at least you've found one, you know where you're going, and I can relax because it doesn't hurt as much (although it never really seemed to work totally). We had a lot of fun with peripherals over the years, including one that was in the back of my hand that decided to infiltrate overnight, making my hand swell up like a surgical glove filled with water. We were instructed to pull it and put a hot wash cloth on it to get the swelling down. That was fun, let me tell you. My left hand kept getting bigger and bigger, the skin stretched taut and tight. By morning, though, it was somewhat normal-looking.

Through the years we got really good at home IVs--I think we did a course about every 18 months before I went to college. With the invention of PICC lines, deep vein IVs that go into the veins of your upper arms, we could doa three-week IV course without issues. That is, until the night my PICC line bled out before my Algebra II final my Junior year. I woke up in the middle of the night to find my t-shirt, and the pillow case under my arm, wet. So of course, I freaked out when I realized it was blood. That was a very funny thing, in retrospect. It was like the Three Stooges. My parents called homecare (again) and they told us to change the PICC dressing. Now the thing about PICCs is that keeping them sterile is really, really important, since the end of the PICC tubing is right near your heart (it's a deep vein IV, after all). So you really have to keep the sucker clean, and there are stitches on the surface, holding everything in place (two little ones). So I was a little freaked to have my parents changing the dressing at 2 a.m. in my bedroom. After some parental swearing (which the nurse on the phone heard, naturally) at the line and each other, we managed to get that done, but I was totally frazzled. Fortunately my Algebra II teacher let me take the exam later and I managed to do OK. But go figure--what other junior tries to postpone an exam because her deep vein IV bled out during the night?? I guess it happens all the time. But I can still see the wrappers and sterile (OK, not so much) gauze sheets on my coverlet, the bloody Limited t-shirt....my dad looking at the dreessing like it was something from his beloved Star Trek ....I think part of the problem may have been that when you're on deep vein IVs, or whatever, you don't want the blood to clot and stop up the line, so the doctors prescribe baby aspirin as a blood thinner. I guess it worked too well!

After this incident, I was never totally comfortable with PICCs. But that didn't really matter, because eventually there weren't any veins left for them, and if you check out the insides of both my arms, you'd believe it. They are covered with pale scars from where myriad and multiple PICCs resided over the years.

Back to life

So I went back to school--6th grade at St. Pius X Elementary School in Reynoldsburg, which was also where my family had gone to church, and we're still members. My mom had the foresight to have one of my classmate's mom's, Mrs. Diewald (Laura's mom--aka Rita, aka BEST NURSE EVER), come in and explain what CF was to the class so that no one would freak out or anything, or think it was contagious. We hadn't gotten to genetics in science yet, and we didn't need everyone thinking that I was highly contagious, or whatever. My classmates even sent me cards while I was in the hospital, as did most of the other grades (SPX was a small school, only about 650 kids total. So word travels fast.), but the card I remember the best is one that my classmate, John, sent me which showed what was presumably me playing Nintendo. I was never a Nintendo girl, but there was one available, should I wish to test my Super Mario prowress (or lack thereof....). 99.9% of my classmates were great, but there's always that .01% that makes life miserable, and unfortunately he sat right next to me. The highlight of his torment had to be the day that we were doing worksheets, or whatever, and he leaned over and said to me, "why are you even doing the work? You're just going to die anyway." Let me tell you how that warmed the cockles of my heart....

I was a good student, not stupendously great, but good. I'm a classic underachiever, even then. I loved reading, social studies, and religion, so those were my best subjects. I liked science, but I hated math, and was OK at spelling--yes, at SPX we had spelling tests every year, which may explain why I am a much better speller than my siblings. :) (although you can't always tell from my typing--brain moving faster than the hands.) I was also in the school band (clarinet, baby) and got the lead in the 6th grade musical, Aladdin , which was a lot of fun (and I got to share a lot of scenes with J (*), the kid I had a crush on..first crush, puppy love, whatever. Sadly he had a propensity for forgetting his lines, but since I memorized the whole script, I could feed them to him.) All in all, I liked school, I just didn't always like my classmates, since some of the could be kind of snobby. But I did have four good friends, so that helped. And I got along pretty well with most of them, even if I did talk the ears off half the class. (And not much has changed since then...)

We did PDs and aerosols, jointly known as "therapy", in the morning (which I could sleep though--joy!) and evening. By the time I was in 7th/8th grade, the Vest had been invented, which allowed me to do therapy independent of my parents, although we still used the old manual method and the Flutter device when we traveled. (The flutter kind of looked like...well, an upside-down whistle, I guess. A tiny metal ball was inside, and when you blew into it, it would 'flutter' and send vibrations back into your chest. But I never liked the thing.)

The Vest (which cost in the neighborhood of $16,000--yay insurance) looks like an lifevest, that you strap on with velcro straps. It's hooked up to a generator by two plastic tubes. The tubes send air into the vest until it's inflated, and then you can set the pressure and speed of the vibrations. You press a small black footpad (or you could sit on it) and there you go! You could do aerosols and vest together, which cut down on the time. It was nice to finally be able to do therapy independently, esp. since the whole "drape your body over the pillows" thing never really worked, since I would crush the pillows. :)

The enzymes also kicked in, and I gained weight and height! By the time I was ready for h.s., I weight about 100 pounds and was (thank God!) finally 5 feet tall! I went to clinic to see Dr. McCoy (or one of the other docs, but usually her) every 6-8 weeks to make sure things were kosher. I went a few years without needing another clean out...but this next one was going to be different...we were going to do most of it at home.

"It's just a clean out "...

So spake Elvis King, a fellow floor mate during my first admission. Yes, that is his real name, and yes, he was a lot of fun. He showed me all the entertainment tricks of the hospital--we decorated towels we stole from the linen room and had wheelchair and wagon races up and down the Y-shaped halls. He was from Fostoria, a town in Northern Ohio, and was awesome. He couldn't believe that my windowsill had spontaneously erupted into bouquets of flowers, balloons, candy, and stuffed animals. It was, after all, a clean out . But when you're 11, and you've got a huge extended family, it's normal. My best friend at the time, Anne, came with her mother and brought me the entire Misty of Chincoteague series, since we were both horse nuts, having both attended Girl Scout riding camp in Hilliard the year before.

I was in the hospital for about two weeks, and boy did we learn a lot. We learned how to do PDs (postural drainage), which back then was still done by hand. Someone (usually my parents, and usually dad) would pound the 12 positions on the chest, 6 upper and 6 lower, where my body was tossed over a pile of pillows in order to get the secretions out of the lower lobes of my lungs more effectively. PDs were especially important for me since I wasn't what Pulmonologists call a "productive" cougher, meaning not a lot came up when I (rarely) coughed.

Along with PDs were aerosol treatments, which consisted of albuterol and saline mixed in a nebulizer and inhaled twice a day before PDs. This drug combination opened up the lungs and made the mucus easier to clear (the mix is a "bronchodialator", for all you med trivia folks.) These treatments would soon bookend my day for the next twelve years.

Also, we learned about the wonderful world of enzymes, which I would have to take orally before eating most foods to make up for the fact that my pancreas didn't produce enough enzymes naturally. I wasn't yet the World Champion of Pill Swallowing, so we opened up the capsules, placed the tiny beads in applesauce or pudding, and I ate it that way. how much fun it was to tote applesauce packets to, say, the movies. Lots of fun for my mom. I eventually, after about a year, learned to swallow them (which took some bribery from the American Girl catalogue). It also helped that the capsule eventually became smaller.

My dad stayed with me during the night and mom was there during the (well, as often as she could be with Mel and Bryan underfoot). This established a pattern that would stick for many years to come.

After the two weeks, I was discharged and went home to resume my life; well, with a few minor changes....

In the Beginning...

there was me. :) OK, ha ha. But in the words of The Sound of Music , let's start at the very beginning...

I was diagnoed with cystic fibrosis (CF), at the age of 11. Yes, this was a late diagnosis, and it wasn't even lung issues that brought it out, it was digestive. I was 4'6" (maybe), and I weighed 58 pounds. Even though small girls ran in our family, this was a bit too small. I had a constant runny nose, and had become totally lethargic, which was rare for the Energizer bunny of our family. I spent the entire summer before sixth grade curled up by the local pool while my brother and sister splashed in the pool, and I wondered where I didn't feel at all like moving.

My diagnosis was confirmed by a sweat test at Columbus Children's Hospital, which was a familiar place for me, since I had spent a lot of time there when I had seizures as a kid. So they already had charts on me. The sweat test is what determines CF, since kids with CF have a very high sodium chloride level in their body. The excess salt causes the mucus in the body to become too thick, clogging the tiny linings in the lungs and pancreas. Since it's thick, it's hard for the body to clear, and the mucus is trapped here, leading to infection and scarring, which causes loss of lung capacity and, eventually, that's it. The thick mucus in the pancreas leads to the clogging of the ducts that release enzymes which aid in the digestion of food, and some CF patients become diabetics due to loss of pancreatic function (that, thank God, has not happened yet to me).

After the sweat test came back positive, I made my virgin trip to Children's CF clinic, which is, thankfully, one of the best in the coutnry. I had my first go with PFTs--that's Pulmonary Function Tests. Basically, you are handed a long, thick tube with a mouthpiece on the end, and a pair of nose clips (that's so you're only breathing through your mouth and not cheating). You breathe normally for a few breaths, and then when you're ready you take a deeeep breath and "push, push, push" it out (as the Respiratory Therapists--RTs) say, until you're empty. Three of these make a complete set, and the best one is the one that's taken. There are other tests that can be done, like going into "the box" for another look at your lung function. Complete PFTs usually consist of FEV1s (the first test), the "box", and another test where you breathe normally, push out all the air in your lungs and don't inhale for 10 seconds. Kathy was the RT that day, and she became a great friend of the family--she's sooo funny.

After PFTs I met with Teri (another GREAT nurse) who took my medical history, and then I met with "God", also know as Dr. Karen McCoy, who gave me the first examination of our relationship. :) Dr. McCoy is a petite woman with dark brown hair and gold-brown eyes, and a brain the size of Montana. She's also one of the best doctors I have ever seen (she's one of the top 125 docs in America, actually), as will be demonstrated as I tell the story. :)

D.r McCoy, after examining me, explained that I would have to be admitted for a "clean out," which is pretty common in the CF world. "When do you want to come in?" she asked.

"Today, I guess," I said. I was a pragmatic kid, and I wanted to get started as soon as possible. It was early morning, so Dr. McCoy said she'd have the papers ready by early this evening, around 4 or 5.

Dad and I went home to pack...well, OK, they packed, and I just sort of sat there, not quite sure what was going on. I wasn't upset, really, since I'd spent time in Children's before and was familiar with blood draws and the ways of hospital. My mom helped out termendously by ordering me a Felicity doll from the American Girl catalogue (I love those dolls...still do). My grandparents were already there, so Dad, Grandma and Mom (I think) went with me to the hospital, where I began my two-week stay on 5 Tower, where my room had a lovely view of a brick wall, but also a VCR, thanks to my Uncle Dave (my mom's sister's husband), who knew some of the higher-ups at Children's and could make things happen, like a VCR. :-D High tech in those days, let me tell you.

The first day began with an IV being placed by Jenny, who would be my favorite nurse during that hospitalization. Let me tell you, that IV hurt like crazy, and I'm not sure why, because it really shouldn't--it's just a tube, the needle is removed. But it hurt so bad, I still remember the burning sensation today. My grandma came into the procedure room with me, and I cried, big, silent crocodile tears, as Jenny tried to get the IV in, and succeeded on the second try. Issues with IVs were to become a common theme.

So I began my first stay in the hospital for a CF clean out, and we began to learn more than I thought possible...

that's enough for now...I'll post more later!

Yo!

Welcome to "Bucket of Parts", the blog for transplant info. :)

The reason I've called this "Bucket of Parts"--I stole it from the old Mr. Potato Head commercials. "Mr. Potato Head / And his bucket of parts"...given that since I have a stranger's lungs in me, it's occured to me that our body parts are, essentially, interchangable! Which is definitely a good thing, or I wouldn't be sitting here blogging with you.

Some back ground: I'm Emily DeArdo, and I was the first double-lung transplant recipient at Columbus Children's Hospital last July (yikes, almost a year!). Since the transplant already happened, I'm going to do a little bit of flashback for these first few posts, and then hopefully we'll be brought up to date pretty soon.

My blog is green b/c that's the color of organ donation--green and blue. I am going to say, again and again, that you should DEFINITELY be an organ donor! It's so easy, it doesn't cost a thing, and it saves lives every single day. Without the generosity of my donor and her family, I wouldn't be here. And that would be too sad. :)

I'm twenty-four years old and hold two degrees from Capital University here in Columbus, one in Political Science and the other in English Literature. I have two siblings, a brother, Bryan, who's a 20 year old sophomore at OSU, and a sister, Melanie, who's a 16 year old sophomore at Pickerington North H.S. I graduated with honors from Pickerington High School (GO TIGERS!!) and currently am employed by the Ohio Senate in the Communications Office.

Now that you know something about me, let's get going...

Enjoy! And if you're a transplant recipient, feel free to post as we go!!

Emily