Monday, April 30, 2007

Writer's block

Not a lot going on around here, health-wise (thank God!), so that's fantastic. Had a meeting w/ Kathy today, which was always helpful. Psychotherapy can be great.

I've been thinking about the Book idea again. Everyone is always saying "you should write a book." Well I don't know. The problem isn't so much the writing (writing is, after all, my job), but how to organize the material. How to make it interesting. I'd like to write a book that's informative but also a mixture of things--funny, serious, with faith thrown in there too (of course), and it seems a bit beyond my grasp as a writer. And there's the Anne Frank idea; who would be interested in the "unbosomings" of a 25 year old? Even if I do have more lives than a cat. I know that I'm tired of seeing/reading books that perpetuate old transplant/CF myths and I'd like to dispel some of them (in a humorous and thoughtful way, of course).

Any thoughts on this would be greatly appreciated. I have the CI surgery coming up so I will have an abundance of free time, at least for awhile. So I could get started if I felt that someone other than my mother (hi mom) would actually read it. And actually, she probably wouldn't get to it for years given her current reading pace (kidding!). So let's amend that to my parents. And maybe my siblings.

Tuesday, April 24, 2007

Eat update...

Went to see Dr. Willett, my lovely ENT today, and we are still on for May 23rd for my C.I. surgery (cochlear implant, if you're just joining us). And apparently he saw another CF kid today who needs one, too! I told him we were going to start a whole new side business for him--CF kids with ruined ears.

I was actually there for a sinus clean-out, since that needed done, but we did talk C.I. a little. Everything should be smooth sailing from now until the 23rd...I just have to fax him the disability forms the state is making me fill out, even though I'm not technically disabled. Oh well. Whatever. I'll be glad to get this done, let me tell you.

Thursday, April 19, 2007

Yay good clinic!

Good clinic today--Yay! PFTs up four more points, so that's exciting. Closing in on the high of 60% (or so) which is also exciting. I go back the week before my C.I. surgery, so not until mid-May. Whew. It's so nice to go in, see people, and then leave. :)

The Vigil

She turned away and I noticed that her chin quivered as she started to speak. As she turned back, her tear-filled eyes met mine. "So, how do you thank someone for a life?"...
"You give it back, Jenna. You give it back."

--Richard Paul Evans, The Timepiece

Last night was LOOP's annual Candlelight Vigil, which celebrates transplant recipients, honors donors, and provides hope for those who are still waiting (that's about 96,000 Americans, by the way). Last year was my first year attending (I also spoke), but this year I was a member of the planning committee and was a greeter, which was easier for me since I didn't have to prepare remarks (even though I love to talk).

The transplant community is really a great, warm group of people. You have recipients, who just seem to be naturally drawn to each other, no matter what organ you received. Really, the experience is fairly universal--the waiting, the recovery, the immense gratitude and the feeling that "thank you" is totally inadequate to express what the gift of life really means to us.

But you have donor families in the community, too, and so often, they are glad just to see that we are alive and doing well. I once told a donor's dad that "thank you" feels like so little compared to what they gave. And he said that it's enough to know that we are healthy and happy. In a way, life goes on. At the Vigil, there is a video tribute to the donors, and some of them are so young--babies, even. But all of them elicit stirring thoughts, the paradox of donation--you are alive, watching the video, because they died. It can be quite eerie.

Then you have people who are "supporters of the cause"--they work on behalf of donation because they believe in it. They may not know a donor, or a recipient (they do after coming to work for LOOP!) but they want to be involved. They love to hear your stories, too. :)

It's a great community, very open and very caring. For everyone involved it's so emotional that these events are great ways to share all of that. Even as transplants have become more "common", they're still far from being totally mainstream, and a lot of people are afraid of them, or have a lot of misconceptions. Being with people who know the story makes it a lot easier. Especially since, with CF, I didn't have this kind of community because we had to "stay away" from each other, physically, to avoid infection. So you become fairly isolated. But the transplant community is close, and I love that. It's great to be able to share these feelings and spread the word about donation as you do it.

Tuesday, April 17, 2007

Candlelight Vigil

If you're in the Columbus area, tomorrow night is LOOP's annual Candlelight Vigil, which celebrates donors, recipients, and those still waiting for transplant. There will be speakers representing all the different aspects of donation (donor families, recipients--I spoke last year!--people waiting, families of people who died waiting), a slideshow tribute, and the lighting of a candle representing each person who is waiting for a transplant. If you've never been and are somehow connected to donation, you should go. It really is a powerful evening. For more information, head to Lifeline'ssite and click on "events" at the top of the page. It starts at 7:30, rain or shine...

Monday, April 16, 2007

two for the price of one!

Hear ye, hear ye... (OK, yes, I'm being dramatic here)

Amber (the second lung tx kid at Children's...OK, no kid, she's a college student!) and I will be performing (she's speaking, I'm singing) at the Lima Walk for Donation on April 29th. The event begins at 2:00 and we should be doing our thing around 3:30, 4:00. More more information go to Lifeline and click on the "events" link at the top of the page.

Saturday, April 14, 2007


And the Pens won, 4-3, against Ottawa at Ottawa. Series at 1-1.
Go Pens!!!

(Yes, I am a hockey fan, for those of you who are unaware. And I'm sooo glad one of my teams in in the playoffs!)

Support groups

Last week a few of the transplant families from Children's got together to have our first "support group" meeting, and I have to say, it was fun, probably because it didn't involve sitting around talking about "our feelings, " which would have been hard to do, given the group make-up.

There were two recipients: me, and then a 15 mo. old heart tx, who was just sooo adorable. He was 3 mo. old when he received his transplant, and he's just so cute. Love him. His mom and two older sisters were there with him. My parents had come with me, and the day had been organized by the mom of a heart-lung recipient, who was also around 3 months (I think) when he was transplanted. She brought her new baby, who was also very adorable. So, as you can guess, I was happy because there were a lot of cute kids.

We met in the library of the Ronald McDonald House (which is has a reading room, a play room, a living room, all sorts of things. The kitchen was super-cool and very high-tech. There was, of course, a room totally devoted to the Buckeyes (well, it did say "In Honor of Jim Tressel" on the plaque outside, so you know...). But the library really needs some better adult books. I think I need to take care of that!

Anyway, we talked about how we got to the point of transplant, and some random things, like how the moms get their boys to take the drugs (I have a hard time with some of them--the predinose, for example, just tastes gross, and there are some days where I am sorely tempted just to spit it out.), activity, stuff like that. It was pretty general but a lot of fun. I wish Amber could've been there but 1) she was in Miami (lucky dog) and 2) it would've been a long drive for her since she lives upstate. The rest of us live in the general Central OH area.

But it was fun and I got the contact info. for everyone so hopefully we will be meeting again. Sorry to cut this short, but I'm having my 25th birthday shindig with my friends tonight in...oh....a half hour, and I need to get ready!! Eek! At least the cake is baked....yummy. :)

Oh, and I got my Donate Life plates! They are on my car and look awesome! If you live in Ohio be sure to go tot he BMV and ask for them ! They are $15 extra with $5 going to the Ohio Second Chance Trust Fund to raise awareness of organ and tissue donation throughout the state. Lifeline's website (link in the blogroll) has a link to the BMV, so go!

Tuesday, April 10, 2007

OSU results

The results are in...I have a normal heart. Shocking, isn't it?
I love spending time at OSU discerning things we already knew! But I guess it's better to be careful when it comes to surgery prep.


I read this on wiki's page on lung allocation they decide who ranks where for lung transplants. This is nuts. It's amazing I got mine at all.

For example, a lung from a 16 year old donor would first be offered to the person in the age group 12-17 with the highest lung allocation score and matching blood type in the vicinity of the transplant center. If there no suitable recipient in that age group, it would next be offered to the highest LAS-scoring candidate who is under 12 years of age. Finally, it would be offered to the highest LAS-scoring person of age 18 or older. If there is no suitable candidate within the area, the lung may be offered to someone farther away, within certain time and distance constraints.

My lungs came from Minnesota and the woman was a lot older than me (I know more about my donor than most people because of the press surrounding my transplant). So how I got her organs I have no idea. It's just nutty to think about.

Monday, April 09, 2007

It's my birthday!

Yes friends, I am 25 today. Woohoo!
But seriously, I do have to thank my donor family, whoever they are, because without their generosity I know I would not be here today to celebrate with my family and my friends (well the friends are on Saturday). I am so grateful for the gift they gave me!

I will hopefully have some pics up later..stay tuned... :)

Sunday, April 08, 2007

popcorn time!

We haven't had a good popcorn time in awhile, so here's what I've been watching:

--Charlotte's Web: Dakota Fanning and the voices of Julia Roberts, Oprah, Robert Redford, and others. I loved the animated version I had seen as a kid, but this one was a lot closer to the book, I think, and I loved the mix of real animals w/ CGI. You couldn't even tell the difference, which was very cool. Dakota was awesome as Fern, and her brother Avery was hysterical. Her dad seemed a bit too young to be her dad, though. The voice work is also great, and the fact that they're celebrities doesn't detract from it. You're not thinking every time Charlotte talks, "Oh that's Julia Roberts." Her voice is perfect for the part. Very funny, too, especially the geese, and the references to farm animals, like one of the sheep telling the other sheep they don't need to blindly follow each, they can think for themselves! Amusing but also sad, esp. the ending. (If you haven't seen it or read the book--all two of you--I won't ruin it) Excellent, and not just for kids. If you loved the book you will love the movie.

--Return to Me: Wrote about this in the post below, but it really is good. Takes place in Chicago, where Bob Rueland is married to the love of his life, Elizabeth, whom he's been dating since they were 15, and married to since they were 20. On the night of a big benefit for Elizabeth's zoo (she's an ape keeper), they get into a car accident and she dies. In the same hospital, a young woman, Grace, is waiting for a heart transplant. The film then goes to a year later. Grace got the transplant, and Bob's friend Charlie, who used to work with Elizabeth, sets Bob up on a blind date at the Irish-Italian restaurant that Grace's grandfather (Carrol O'Connor, in his last movie role) runs with his friend Angelo, and where Grace is a waitress. Grace and Bob hit it off and Bob comes back. They start dating. You can figure out the rest. Also stars Bonnie Hunt as Grace's friend (and the daughter of one of the restaurant's partners), with James Belushi as her potty-mouth Chicago cop husband (they are a hysterical couple). The old guys who run O"Malley's are also a great group of people, arguing over the best singers and ball players while they play poker in the back. One of the few transplant movies I've seen, and it's very accurate. Love that!

--A Good Year: Haven't finished this one yet, but I like what I've seen. Russell Crowe plays an uptight London stockbroker who inherits an estate and vineyard in Provence from his late Uncle Henry, who he used to spend summers with as a kid. In hot water with the government for some recent trade practices, he starts to think about keeping the place and moving down there. I can't tell you anymore because, liek I said, I haven't finished it, but it's good so far, and there will definitely be a girl involved. Freddy Highmore (Finding Neverland) plays a younger Russell Crowe in flashback sequences, and he's very good. He's good in everything, what am I saying?

Right now I'm watching The Sound of Music, and I don't think we need a review of that. Capt. Von Trapp is taking Maria to task for the Play Clothes Incident. :)

Saturday, April 07, 2007

Hollywood wisdom

Of course I'm happy. What else am I gonna be? I don't feel like I should have "days." I should be happy just to be alive. And I am! I'm alive because someone else is dead. I should just shut up and be happy, right?

--Grace, Return to Me (she received a heart transplant)
Great movie, takes place in Chicago...go watch it. It may be the only transplant movie I know of. :)

Friday, April 06, 2007

OSU round 2

So Yesterday was OSU round 2, and it went better, as in we actually got all the testing done. :) After the IV was put in (they're amazingly good at that), we drank water (but not as much as last time), then had the scan taken. 15 minutes of lying under a big Xray thing, lots of fun, let me tell you. Then we waited for the treadmill test itself, which involved lots of sticky (cold!) probes put on my torso and more nuclear stuff in the IV line (so far I haven't been glowing in the dark, but we'll see what happens at the Vigil tomorrow! Heh heh).
The test itself was, um, stressful . The beginning wasn't too bad--10% incline at 1.7, then 2.5, miles an hour. That was OK. When we cranked it up to 12% incline I got a little iffy, and once it started going 3.5 at that incline I was done . No thank you. Besides the fact I haven't even gone 3.0 in my regular workouts with no incline. My BP was OK, an I guess my HR was OK but I was hyperventilating to beat the band. So we stopped there, in "stage 3." I have no idea what that means for me, but I guess I'll find out. Then we did another heart scan/X ray thing for the "post" and then we were home. Whew. My stomach was not entirely happy with me, having been NPO for so long, but I did eat dinner before heading off to Mass.
Today I'm pretty sore and I've got a headache, probably because my eating is all off. I'm trying to fix that. Maybe a nap is in order...

Monday, April 02, 2007

Learning from CF

This is a great article over at the Canton Repository. Here's the beginning:

Recently, a co-worker, an intelligent but brash young man, asked me a question about my late husband, Jim, that irritated me.

He said, "You knew about his cystic fibrosis before you married hi, didn't you?" In other words, Jim was "damaged goods," and what was I thinking to marry him? The question also implies that illness precludes one from happiness and a normal life. How could a sick person possibly be a good mate?

I swallowed my pride, thinking this young man hadn't had life experiences that would allow him to understand why I had married under those circumstances. Then he asked, "Didn't your husband hate being alive?"

That one blindsided me. I answered as calmly as I could that Jimmy had loved living. Yes, he was short of breath. Yes, a bulky oxygen tank encumbered him. Yes, he had to do daily therapies, but at no time did I hear him say, "Gee, I'm sorry I woke up today!"

Read the whole thing. As for me, I agree. It's amazing how many people are totally insensitive to this issue. Like just because I had CF or whatever I shouldn't have any goals, shouldn't want a normal life like everyone else. I should just languish here and let nature take its course. In fact, soon after I was diagnosed, one of my classmates said to me, "Why are you studying? You're just going to die anyway." That was a great thing for an 11 year old to hear, let me tell you.
People can be so crass. And they just assume that you shouldn't do anything, that your life isn't worth living if it isn't perfect. GRRRRR.