Starting the Ten Year Party

So far, the “official” markings of my 10 year transplant anniversary have been good. My tests all came back beautifully from clinic, so that’s excellent news. We test not just the lungs, but all my vitamin levels, kidney function, bone density, and things like that, to make sure that the meds aren’t causing problems in other areas of my body, and I’m glad to report that they are not. So that’s fantastic.

Yesterday, I went to Lifeline of Ohio’s monthly staff meeting to talk briefly about my transplant experience. Lifeline of Ohio is my local organ procurement agency, and they’re the people that do the “grunt” work, so to speak, of organ donation, for my area of Ohio. They promote and coordinate the donation of organs, and I’ve done a lot of volunteering with them since my transplant. Normally, I connect with the communications and education people, who organize talks and volunteer opportunities, but the meeting was for everyone who works for lifeline–about 60+ people, and includes nurses and medical staff and a host of people in other areas.

I didn’t talk long–about five minutes or so–but it was great to share my story with them. They have a new person come in every month to talk about their experience and I think that’s a great idea. It shows the staff the results of all their hard work! There were a few questions after:

Do I still have CF? Yes, I do. I’m very fortunate in that I don’t have a lot of other CF problems. I don’t have diabetes, my kidneys behave, and my sinuses are good. I am pancreatically sufficient, so I don’t take enzymes and I’m not malnourished (hahaha, malnourished. Ha. Right. So far from that now.) Other people aren’t quite that lucky, but for me, my CF problems were mostly confined to my lungs. But since CF is a genetic disease, I still have it–the transplant didn’t change my genetic code. But my version (so to speak) of CF was helped enormously by the transplant.

How long was the wait and what was it like? The wait was about 40 days, give or take. It was hard to do everyday things like brush my teeth. Think about that. Brushing your teeth isn’t exactly hard. But I couldn’t do it and breathe at the same time. After, of course, totally different story.

I also talked about the advantage of having a center so close to me. In central Ohio, we’re blessed to have two lung transplant centers within a few miles of each other! If I’d had gone to Cleveland, Pittsburgh, or St. Louis (the other centers that my CF team sent people for transplant), my mom and I would’ve had to relocate, for months, leaving my dad and my two siblings (who were both still in school at the time) to fend for themselves. It wouldn’t have been pretty. It was so much easier to be twelve miles away from the center and to be able to go home right after my discharge, and not stay in an apartment or Ronald McDonald house sort of thing for months on end.

The anniversary, officially, is in about two weeks. We’ll be in Charleston the day of, and I’m so excited for that!

If you’re not an organ donor, please be one? Please please? You can find information and sign up here.

Daybook No. 81

Daybook No. 81

Outside my window::

Cloudy, but warmish, which is good, because my brother and I are going to the Zoo tonight (more on that in a bit), so I don’t mind it being about 40 degrees!  Yay!

Reading::

Oh, my Advent book pile is HUGE: Come, Lord Jesus; The Greatest Gift; Advent and Christmas Meditations with St. John Paul II. All of those are part of my Advent daily devotionals.  As far as non-Advent books, I’m re-reading One Thousand Gifts.

In the CD Player::

Loreena McKennit, A Midwinter Night’s DreamReally, people, if you don’t have this, get it, because it’s amazing. Also, the Mockingjay Score, because I love it, and I love Jennifer Lawrence singing on it.

Around the House:
Holy moly, was I busy yesterday. I took out bags of trash, swept the kitchen floor, dusted, vacuumed, worked on my clothes-to-donate pile and books-to-sell pile. AND I wrote out all the Christmas cards. These cards are going to Seattle, Washington, D.C., North Carolina, all over Ohio, Texas, Connecticut, Illinois, Minnesota, and lots of places in-between. I love writing out Christmas cards and updating my address book entries with the sweet babies that were born in 2014, and the new homes people have. So many babies were born in 2014!

Plans for the week::

Tonight my brother has graciously agreed to come with me to Lifeline of Ohio’s Ambassador Appreciation Dinner. This year it’s being held at the Columbus Zoo, which is in the middle of Wildlights. Lifeline of Ohio is central Ohio’s Organ Procurement Agency–they promote organ and tissue donation and are responsible for actually procuring organs and things like that. They are awesome folks, and I’ve worked with them since basically right after my transplant in 2005. (I was even one of the “faces” of their PR campaign in 2006….yes, I was a model. Hahaha.) So tonight we have dinner and celebrate the work we did over the past year, and the awesomeness of organ donation, generally.

Wednesday I’ll be going to the third night of my parish’s Advent Mission. It started last night, with a talk on angels and saints, and was amazing. The priest giving the mission actually led a silent retreat I went on a few years ago, so I’m familiar with his awesomeness. The fact that he’s a Dominican makes it even more awesome.

Thursday it’s Port Access Day–whee!–and dinner with my parents, and then the final night of the Advent Mission.

Friday is Christmas Gift Exchange with Tiffany, and Saturday is rehearsal for life promises! Yes! More on that later this week, I think. It deserves its own post. But in short: I will be making life promises to the Dominican Order on December 14. I am super-excited.

Sunday CCD. We’re going to talk about the birth of Jesus and the Wise Men and show a video. We only have two classes in December and then we’re off the rest of the month.

Pondering::

OK, this is just awesome: Harvard Valedictorian enters the Ann Arbor Dominicans.Win!

And this:

InTheStressfulTimesSeekGod

This is really good to remember all the time. Don’t let this season get so stressful and hurried that you forget about the reason for it.

Seven Quick Takes No. 54

7_quick_takes_sm1

 

I.

Today is a big day (“Today’s a very big day, Pascal!”)

Me and Pascal

Me and Pascal

Today is my nine-year transplant anniversary.

Nine years ago I was on an operating table at the Resort getting new organs put it. It was a twelve-hour surgery which started around 7/7:30 AM (I think), so we were just in the beginning stages at this point. My new lungs probably hadn’t shown up yet! They came from Minnesota, and one surgeon started the operation while my actual transplant surgeon took over the scalpel once he arrived via Lear Jet with my new organs.

My donor was a 52 year old woman named Suzanne who died of a brain aneurysm. Her brother made the decision to donate her organs, and I am alive because of them. I am going to go onstage in a few hours and do a show because of her, and I am only alive today because of her.

I never met her. But she saved my life.

(If you’re not an organ donor, consider it?  sign up here?)

II.

Because of my organ donor, here are just a few things I’ve gotten to do:

* See my sister graduate from college

*Go to Chicago, New York, Houston, Walt Disney World, the Outer Banks

* Be in wonderful stage productions like Oliver!, And Then There Were None, Les Miserables, Jekyll & Hyde, Ragtime, The House of Bernarda Alba, The Music Man, The Importance of Being Earnest.

*Work

*Audition for Jeopardy!

*see my godson grow up

*become an opera buff 🙂

* Write

*spend time with my family and friends

*Meet people I never would have met

*Taught CCD

*Joined the Dominicans! (Life promises this December!)

III.

Living to 23 is OK. I mean, I graduated from college and I had some good times. But the nine years after have been priceless. And Suzanne gave those to me.

IV.

To celebrate, tonight is the opening of The Music Man. No, that’s not on purpose, but it’ll be great to do this show with old and new friends (Tiff is in the pit), and people I love in the audience. The show runs for two weekends, so if you miss tonight, you have five more chances to see it. But tonight’s gonna be pretty awesome, not gonna lie.

V.

I did spend a night in the resort this week. (If you’re new here, resort is my slang for Children’s) I was having some chest pain when I went into rehab on Wednesday so we thought I should get it checked out, which led to ER visit, and then night of observation. But the heart is fine, the lungs are fine, everything’s fine, so they threw me out yesterday–just in time for opening night. 🙂

VI.

This is a great cast and crew. I’m having so much fun with them, and everyone is super-nice and dedicated to the show. I think we do a better job than the movie, in my unbiased opinion. 🙂 We’re a lot funnier, for starters.

VII.

I’ll try to post pictures later, but basically, it’s a great day when I get to do theater. Hope to see you at the show!

NDLM_2014_Web_960x400 So today I got to do something super neat–talk to students at my former high school about organ donation! I was jazzed to be back in my old health classroom and at my old school. Some things are the same (the incredible amount of purple, the electronic bells), some things are better (there is an ample selection of Jane in the library, or “Media Center”), and some things are totally different (teachers saying “no technology out, please” before every class, and prom tickets being $50!!!).

I spoke to four different classes about my experience with organ donation–a brief overview of CF (all of the kids had taken biology A at this point so they knew what a “genetic disease” was), how long I was wait-listed, how long the recovery took, some of the surgical ins and out (lungs are like balloons that can be deflated to be inserted, where my scar is). The fact that I had graduated from the school seemed to touch a chord with them–as in, I was once where they were (Literally. Exactly where they were.)

Sometimes organ donation can seem really foreign and exotic, but when you meet someone who’s had it done, I think that really helps. Most of the talk in each class was done by a Lifeline of Ohio community educator, who talked to them about what can be donated, how that’s decided, what it means to be an organ donor, dispelling myths about donation, and using foam organs as visuals, to show them what can be donated, solid-organ wise (in case you’re curious: lungs, heart, liver, kidneys, small intestine, and pancreas; tissue wise: your corneas, muscle, bone, skin, tendons, heart valves).

The classes were enthusiastic and asked a lot of great questions. I had a lot of fun being with them and getting to talk to them about how organ donation doesn’t just save faceless people–I have a family, I have a life because of my donor.

April is Donate Life month. Are you an organ donor? 🙂 🙂

 

Catholic Women’s Daybook No. 57

catholicwomansdaybook

 

Outside my window::

Beautifully sunny. Very appropriate for Easter Monday!

Wearing::

Jeans, a grey v-neck t-shirt, a periwinkle cardigan, and flats. I’m going to speak to students at my old high school about organ donation in a bit. 🙂

Reading::

St. Faustina’s Diary; Almost-Saint John Paul II’s encyclical Veritas Splendor, and The Goldfinch (like everyone else on that one, it seems)

In the CD player::

Handel’s Messiah–the Hallelujah chorus. Duh. 🙂

In the kitchen::

Trying some new salad and dinner recipes this week. Tonight I’m making a turkey burger. Tomorrow’s dinner is the “yoga night” two bean chili (It’s really yummy!); Wednesday is sweet potato enchiladas; Thursday, chicken with EVOO and Italian seasoning and roasted asparagus; and Friday I have an audition so I’ll be eating on the run.

Around the house::

The usual cleaning, vacuuming, dusting, etc. Focus is the bedroom this week.

Plans for the week::

Rehab later today, then yoga tomorrow and a CCD review session with Sister; Wednesday rehab, and Friday auditions for The Music Man with PCT. Sunday CCD resumes for the last stretch of the year.

Pondering::

“And behold, Jesus met them on their way and greeted them. They approached, embraced his feet, and did him homage. Then Jesus said to them, ‘Do not be afraid. Go tell my brothers to go to Galilee, and there they will see me.'”

John 28

New experience: signing up organ donors!

Even though I’ve been a volunteer for Lifeline of Ohio since shortly after my transplant,two Saturdays ago was the first time I’d ever used my volunteer training to sign up donors! I’ve given speeches to various groups (including Girl Scouts!) and helped with some events, but I’ve never done one of our most vital activities. I was glad to change this at the local Health and Fitness Expo, held at the convention center.

One organ donor can save up to 8 lives, and improve up to 50, through organ and tissue donation. That’s a HUGE number of people! Think about all those people whose lives are changed for the better because of one person’s decision to be an organ donor.

The job is pretty simple. Lifeline brings a whole bunch of our brochures, which are organ donation sign-up sheets, and also give some facts about organ donation. Myself, and other volunteers, asked people who walked by our booth if they were organ donors. If they were, and showed us the heart on their driver’s license (indicating they were, indeed, a donor), they got a green “donate life” bracelet (similar to the Livestrong bracelets). If, however, they were NOT a donor, and signed up, they got a green Donate Life scrunch sack. We also rang our Donate Life bells to announce to the tables around us that we had signed up another donor. (KIds really liked the bells.)

We signed up at least 100 people on Saturday–and it was a two day event! To help attract people, we also had candy, the chance to win tickets to the Crew, our local MLS team, as well as cornhole (a HUGE thing in Ohio) and a picture-taking booth, where you could stick your head on the body of a superhero, because donors are HEROES!

Everyone I asked was already a donor, but right before my shift ended, I got a new donor signed up! I was really excited about this. He was a college kid with his girlfriend (who was a donor), and I was so happy to get him signed up.

When you volunteer at at Lifeline event, people usually ask what your “connection to donation” is–are you a donor, a donor family member, a recipient, or a “supporter of the cause”? After awhile you get to know who’s what among the frequent donors, but I always love sharing my story with staffers, volunteers, and the people at health fairs and in talks.

Donor families are always great to see at these events. They’re the ones who lost a loved one, but through that loved one’s choice, they saved others and saved other families from the heartbreak they experienced. It’s always a joy to talk to them. One particular family at this event had a woman, her daughter, and the granddaughter–three generations of volunteers!–who were there celebrating the life of their family member, who was a donor. (The granddaughter, who’s seven, became our Cornhole Proprietress, giving out prices and doling out the beanbags.) We also have quilts honoring our donors; each family can contribute a square celebrating their loved one’s life, and the squares are always beautiful and touching. These quilts are a huge draw when we display them, as we did at the health festival.

It was a great opportunity to meet new people, lobby for our cause, and get people to sign up! If you are not an organ donor, here are some facts for you to consider:

  • There is no cost for organ donation.
  • The body isn’t disfigured; you can still have an open casket funeral service.
  • 18 people die everyday waiting for an organ transplant in the U.S.
  • The waiting list is now (as of July 2012): 114,712 people.
  • ANYONE can donate, no matter what your age or health history!
  • All major religious support organ donation as an act of altruism.
  • For more facts and FAQs (see that? Ha!), go here.

If you are an organ donor, THANK YOU! All of us thank you for your decision to donate life. My donor was 51 years old, from Minnesota. I never met her, and I’ve never met her family. But she saved my life.

Dance excitement starts today!

So excited, because today BalletMet kicks off their new season with the Global Dance Stars Gala! This event features what it sounds like–dancers from companies all over the world to perform at the gorgeous Ohio Theater in a celebration of dance.

Northern Ballet of England’s “Cleopatra”

There will be dances I”ve never seen before, like some Balanchine (Agon!) and David Nixon’s new Cleopatra, which has music composed by Claude-Michel Schonberg (Yes, that Claude-Michele Schonberg, of Les Miz, Miss Saigon, Martin Guerre, etc.). Lots of Swan Lake, and all sorts of other goodies are in store. I am massively excited. New works for this year make me happy!

Report to come this evening. Before that I’m going to volunteer at the local health expo to get the word out about organ donation and to get more donors! 🙂

Expanding my culinary frontier

Over at my food blog, I talk about undertaking the #cookwithjulia project hosted by PBS, in honor of Julia Child’s 100th birthday tomorrow. Tonight’s entry in the contest: cucumbers baked in butter (if you REALLY want to up the fat ratio, add cream, as is suggested in one of the “finishing” entries in the book!). I cannot wait to taste this.

I’ve always loved to cook and have a fairly adventurous palate. Sadly, with transplant, there are things, like sushi, that I cannot eat. I am sad about that because I do love fish. But tonight I made bruschetta for the first time, and only my third Julia Child recipe ever. I am Master of My Kitchen. Or I will be, soon.

So to see these recipes, go here.

There is a lot of ADVENTURE this weekend! Saturday I’m volunteering at the local Health Fair to sign up organ donors; Saturday evening is the Global Gala of Ballet Stars! And then Sunday is our daylong retreat for my Lay Dominican chapter.

I know I’ve been a bit slow around here, but it’s summer, and that’s how it is. Coming up, though, are photos from my “Jane Austen hike” last Saturday. Jane, and Virginia Woolf, liked to take long walks to think about their stories and writing in general. I went to the local arboretum last Saturday, took pictures, jotted in my journal, and generally felt like a Very English Author. 🙂 So pictures to come.

 

Lucky Number Seven

There would BE no Year of Thirty without the actions that took place precisely seven years ago this evening.

Seven years ago it was a Sunday night. I was at home, having gone to my favorite Irish Pub for dinner, and having bought a cute Coach bag, but being utterly exhausted. Normally, something like this would have energized me. But with 20-something% lung function, and sleeping about 14 hours a day (when I wasn’t at work, where I tried NOT to sleep, and usually succeeded), leaving the couch was something I just didn’t want to do. If I managed to get dressed, brush my teeth and hair, and put makeup on, it was a really good day.

My family and I were all watching a movie on TV, and I was taking my evening pills, when my cellphone rang. The caller ID showed that it was my transplant coordinator, Karen. I knew she wasn’t calling me to chat, even though we were friends. She was calling to summon us to the hospital.

A 50 year old woman in Minnesota had died after suffering a brain aneurysm. Her brother (her only family) had decided to donate her organs. My surgeon and his team were flying to Minnesota to see if the lungs were good. We already knew the blood type and body type (size and weight) were the same.

Since we live only 15 minutes from the hospital (in traffic), Karen told us to sit tight. Which we did, until 1 am, when I got the call to come to the ER.  (I didn’t call my friends or family yet–except for my boss and my grandparents–because it might have been a false alarm. That happens sometimes.)

Since I was Children’s first double lung transplant, there was a lot of excitement. But once I got to the floor, it was “hurry up and wait” until the OR was ready for us. We would start before the doc got back, but we couldn’t start TOO early. We had to time it exactly. I actually managed to sleep. The hospital chaplain came and heard my confession, but sadly I couldn’t receive communion because I had to be NPO (Latin, “nil per oram”, nothing by mouth).

At 6, Karen appeared and we headed down to pre-op.

Obviously, it worked, or I wouldn’t be typing this!

But the need for organ donors is HUGE. 19 people die every day waiting. The national list is at 100,000 now, I believe. If it’s not, it’s super close to it. Please, please, PLEASE be an organ donor. Here is all the info you need. It doesn’t cost anything. Age isn’t a factor. You don’t have to be in perfect health. All major religious agree that donation is a morally acceptable–indeed, laudatory–thing to do. I’m an organ donor! (Not that there’ll be much they can use, but…)

Tonight I went to yoga class and worked hard for 90 minutes. Tomorrow, the actual anniversary, I have ballet class. My body could never have done these things before transplant, at least not once I was past the age of fifteen.

Please, consider being an organ donor, so that some family can feel the joy me and my family felt seven years ago.

Are you an organ donor?

Well:

1) You should be

2) TELL PEOPLE you are an organ donor!

This story in today’s Dayton Daily News drives home the point that we need more donors, and, if you are a donor (thank you!), please tell your family, friends, significant others about this decision. Also—be sure you say you are an organ donor when you renew your license, so it’s there!

My six-year transplant anniversary is on Monday. I am grateful, every day, that a woman in Minnesota decided to be an organ donor. She saved my life. I can never thank her family enough for what they did—what she did.

If you’re not an organ donor, be one.

And once you are, tell people.