Thoughts--Dignity with a chronic illness

"Do you know anything about multiple sclerosis?"
"Only what I've read...I had a patient...who had it...But she was great. She didn't let anything stop her. Even using a walker. She danced with her walker."
"Christ, I hope that doesn't happen to my mom...It's like what you said about her being so into her dignity...she'd feel like she could never go out of the house."

--J. Mitchard, The Breakdown Lane

The Breakdown Laneis a new Jacquelin Mitchard book that deals with a bright, vibrant woman who is diagnosed with MS at the same time her husband leaves her. She has three kids. She's a ballet dancer. She's used to having it all together. She has a certain image she presents to people.

The above excerpt is from a conversation her son is having with a old friend of Julianne's (the mom). And the part about dignity certainly rang true to me, even though CF and MS are vastly different things.

For me, it was oxygen. I knew I would never leave the house if I was ever on oxygen therapy (other than at night, when it didn't matter...I was 23, I wasn't married, who cared?). There was no way that would happen. I was the go-getter, the one who organized, who planned, who did everything. Oxygen so didn't jive with that image. Plus, my friends didn't like using the handicapped placard. How would they deal with a twenty-something who lugged around and oxygen tank?

I did just about everything else--I went out with the port accessed, I went to school with PICCs and on IV therapy, etc.But I always covered it up, and I never told anyone unless they reallyneeded to know. Pity was not high on my list of desirable emotions. And nothing said poor kid to me more than the emaciated CFer on oxygen therapy.

When the Cleveland Clinic suggested I start in about a year before my transplant, I freaked out so much I called my CF clinic, who was Not Pleased with this development and took the clinic people to the woodshed. I just hated the entire idea of being tethered to something that would so visibly demonstrate the lack of ability my body had to take care of itself. I didn't want pity AT ALL. That was verboten. Totally.

Thankfully we never got to that point--I only did nighttime supplemental oxygen before my transplant.

Dignity is very important when you've got a chronic illness. It's one of the only things you can control--how other people see you, or remember you. Certain people see it all--they hold your hair when you vomit, they know you don't eat, they help you to the bathroom, they change the IV dressing. But this is a pretty elite circle. Not everyone can handle it. And even if you think some people can, you might not want to let them in anyway. I wanted my friends to keep a certain image, or impression, of me. Is this all mentally healthy? I don't know. But it's how I handled it.

Spring has sprung

And that means....Emily busy. :)


--First of all: Go Pens! What a game!

--This April has been one of the nicest I can remember,if not thenicest. It didn't rain or snow on my birthday, which is a major weather accomplishment. And it's just been beautiful all around. On Thursday Karen and I went out to eat at a restaurant in the Arena District, sat on the patio and ate appetizers while people walked and jogged by (or walked their dogs). It was a perfect night for that, and it was so much fun to just sit there and enjoy good food and being in good company.

A note about that last part--none of it would've been possible without my donor. Since it's donate life month, if you AREN'T an organ donor (and seriously, kids, why aren't you?), go do it, please? The little miracles that result from your decision are so important.

--Reading is just insane. I have way more books that I know what to do with. Time for another book shelf....

5Ks...and other things

I think I'm going to do the Race for the Cure in May. We'll have to see how motivated I am, because I don't want to just do it (I know I can walk it), I want to do it well. So that means more hitting the treadmill, and going outside once Tiff is home and I can walk with her and the canines. And there's the Dash for Donation in July, which is always a Big Event for me.

Speaking of LOOP stuff, tomorrow is the annual Candlelight Vigil, so if you're in town, come out! I'm working the food tent pre-event (I know, I know...I will not eat all the cookies, I will not eat all the cookies!). It's a great event and we'd like to see many people!

I am on a book binge. I have so many books yet to read it's sort of ridiculous. I think I've got about four working currently. Yikes.

Better still....

Cough is getting better. And good thing, too--it's going to be 76 degrees today.
76 degree days were NOT meant for hanging out at the Resort.

Update

well the cough is not as bad, so that's good. I'm still coughing a bit, however, and bringing up lovely samples!
Chest pain also still happening, along w/ some light-headedness. I thought I was having an out-of-body experience today during session....that was fun.
Have to call High Command to check in tomorrow, so we'll see.

Housekeeping

Lots of new stuff, so scroll down...

This is why I blog

So that more Emilys can live:

Emily Haley, whose battle against cystic fibrosis led the community to raise about $500,000 for a double lung transplant, died early Monday. She was 14.

“She fought this hard until the end,” said her aunt, Patty Grimes.

Family members said that Emily was doing well until a few weeks ago .

“Things took a turn for the worse,” said her father, Bill Haley. “She couldn’t fight an infection.” She died at Children’s Hospital of The King’s Daughters in Norfolk.

Over the past two years, the condition of Emily’s lungs had not deteriorated to the point where she needed the transplant. If she had beaten the infection, she could have flown to St. Louis, Mo., for the operation, Bill Haley said.

The community in 2004 got behind Emily after a thief stole a canister of donations for her operation from a Chesapeake sub shop. After media attention generated by the theft, the Emily’s Breath of Hope campaign raised more than $500,000 in just seven months.

The money raised through auctions, raffles and benefit concerts will now go toward the Children’s Organ Transplant Association to be used as matching funds for other operations.

“Our family can’t thank the community enough,” Grimes said. “They saw a little girl needed their help.”

Bill Haley wanted to ask one more thing of community members: to become organ donors.

Emily enjoyed being with her 12-year-old sister and twin 11-year-old sisters. Despite being diagnosed with cystic fibrosis, which made it difficult for her to breathe, Emily wanted to dance and play soccer like her sisters. And she did.

“She never wanted to let this keep her back,” Grimes said.

You know what to do.

Love from the Bubby

(notes: My brother, Bryan, wrote this for OSU's paper, The Lantern, a few years ago. And in the family, we call him "bubby." :))

Lung donor gives recipient a new lease on life
Bryan DeArdo
Issue date: 4/19/06 Section: Campus

Editor's Note: This is a personal story told by Bryan DeArdo, Lantern staff writer, about his family's struggle with Cystic Fibrosis. April is National Organ Donation Month. Bryan's sister, Emily, received a double-lung transplant in July 2005.

For most people dining at Easton's Bon Vie Restaurant two Sundays ago, it was just another typical weekend brunch. For the DeArdo family, however, this meal meant so much more.

My family gathered at this trendy French restaurant on April 9 not only to celebrate my sister Emily DeArdo's 24th birthday, but to also celebrate her new life.

This was the first birthday that Emily would have with her two new lungs. She received them via a double-transplant surgery July 11, 2005 at Children's Hospital. Emily was in need of new lungs because of a disease called Cystic Fibrosis.

Cystic Fibrosis is a genetic disease involving a sticky buildup of mucus in the lungs that makes breathing difficult and leads to infections. It might also cause pancreatic insufficiency that often causes digestive problems. It is a recessive disease that occurs only when a child inherits two mutated copies of the CF gene, or one CF gene from each parent. CF affects 30,000 Americans. The average life expectancy for someone with CF is 35 years.

When Emily was diagnosed with CF in 1993 at age 11, life as she knew it would never be the same. After her diagnosis, her typical day included several therapy sessions that used breathing machines. In addition, she had to take enzymes prior to anything she ate. During the course of the next 12 years, Emily also had to endure pneumonia and bouts of pancreatitis. She often spent many days, weeks and holidays at Children's Hospital.

Still, Emily continued to live life to its fullest. She made all-state choir during her senior year at Pickerington High School. In 2004, she graduated from Capital University with a bachelor's degree in political science and English. Emily graduated from college in four years even though she had incompletes in two semesters because of her illness. This included a life-threatening episode that put her in the intensive care unit in 2001. After graduation, Emily was hired to do communications work at the Ohio Statehouse.

By the summer of 2005, however, Emily's lungs had begun to give up. She could only use roughly 25 percent of her lung capacity. She was listed on the transplant waiting list in May 2005. For the DeArdo family, waiting was the hardest part.

"I was more nervous waiting for the call than during the actual operation," said Carmen DeArdo, my father. "It was very hard waiting, but the wait was worthwhile."

The call finally came on July 10 at 9:50 p.m. The call set off pandemonium throughout the house.

"I was excited, but I didn't want to get too excited in case it was a false alarm," said Michele DeArdo, my mother. "I went outside where it was quiet and sat on the front porch. We had the impression that the organ was coming from far away. I looked up at the dark, starry sky and realized that somewhere under this same sky, a family was experiencing something very traumatic and sad. I also knew that doctors, nurses and others were right then very busy working on this."

Despite my family's frantic reaction to the news, Emily remained cool.

"Once I got the call I was very calm and not worried at all because I knew that the surgery was the only way I'd get to have a life," she said.

After two more calls in the next two hours, my family set out to give Emily her dream. The surgery went under way at about 11 a.m. and went until late in the evening. The transplant was the first double-lung transplant surgery performed at Children's Hospital in Columbus. Afterward, Emily endured weeks of rehab before she was allowed to leave the hospital.

"Emily was perfect to be the first lung transplant recipient here (at Children's Hospital)," said Mark Galantowicz, the chief transplant surgeon who conducted the surgery. "She remained very positive during the recovery. Her internal strength and energy were very important."

In the months following the surgery, Emily has taken full advantage of her new life. She has moved into her own apartment, continued her work at the Statehouse and is in her church choir.

In August, Emily was awarded the Young Catholic Woman of the Year Award. She now is physically active and is organizing a 5 kilometer race for this summer.

"I now have the ability to pretty much do whatever I want without having to think about how much energy is required to do it," she said.

Those around Emily are still in awe of her transformation since her surgery.

"The biggest change is seeing Emily healthy and more independent," Carmen DeArdo said. "It is hard to describe how she has transformed from someone who could barely breathe to someone who just blew out 24 candles in one breath."

While enjoying her new life, Emily and her family remain grateful to the family that donated the lungs that made this all possible.

"Thank you seems so inadequate to express the indescribable gift my donor gave me," Emily said. "Without her family's generous decision, I wouldn't be here."

With April being National Organ Donation Awareness Month, my family is encouraging everyone to take the time to become donors. In the United States, 18 Americans die every day waiting for a donation, or one Ohioan per day. Nearly 89,000 Americans are on the donation list, including 2,285 people from Ohio alone.

"Organ donation is one of the simplest and most important decisions you can make," Emily said. "It only takes a few minutes, and the impact is incredible."

To become an organ donor, visit the local Bureau of Motor Vehicles, or go to the Ohio Organ Donor Registry online at bmu.ohio.gov/bmv.asp or donatelifeohio.org.

"There is nothing more valuable or precious than the gift of life," Carmen DeArdo said.

Me, me, me

From LOOP's site about the Donor Family Reception:

10th Quilt Unveiled at Donor Family Reception

The 10th quilt panel of the Lifeline of Ohio Donor Memorial Quilt, Services through Giving.

To kick off Donate Life Month 2008, Lifeline of Ohio unveiled the 10th panel of the Donor Memorial Quilt at the March 30 Donor Family Reception in Columbus. The unveiling marked the Quilt's 10th anniversary, honoring the individuals who gave the Gift of Life through organ and tissue donation. "Services through Giving" includes 24 uniquely handmade squares telling the stories of mothers, fathers, wives, husbands, sons, teenage daughters and others who are heroes to the lives they saved at the time of their deaths. Visit the Donor Memorial Quilts page for more information on the 10 panels.

More than 300 donor family members, representing 80 donors, attended the annual Reception. Highlights of the afternoon in addition to the quilt unveiling included a performance by double lung recipient Emily DeArdo, and other thankful recipients distributing gifts of gratitude to the families.

Apparently, I was a "highlight." :-D

Yeah, it's early/late

So if you can't tell, I can't sleep. Part of it is that my chest is really super bugging me. The other part is I hate the whole dr. office rigamarole. You think I would be used to it by now, but the thing with post-tx life is that I'm never quite sure where a doctor's appointment will take me. I just really don't want the staff to look at me like I'm nuts when I come in. Lately when I've had symptoms I go in, KNOW something is wrong with me, and then we get numbers, etc. and people look at me like I"m crazy.
What's the line between your gut feeling and hard data? What if the data says one thing, but in your heart you KNOW another? I know something is going on that is not kosher. And yet, I'm paranoid that I'll go in tomorrow and everything will "read" fine.
So am I nuts? Or what?

The plan

Calling The Powers that Be at 8:00 tomorrow, which will probably lead to a trip to the Resort's clinics.
Oh. The. Joy.

Argh!

My lungs are hating me.
For the past fews days I've had a congested cough, but since I felt fine otherwise I sort of let it go (I know, I know, bad Emily).
Well, now I'm coughing pretty much once every few minutes and bringing up mucus plus (yes, sorry to be graphic). This is not good. It is also not good to hear things rattling around in the chest. Also getting chest pain and headache from all the massive coughing.
Not fun. No idea where this is going, either.

A dealbreaker?

I've never come across an organ donation situation like this: (From Carolyn Hax's WaPo Friday chat)

Organ donation quandary: Just found out my boyfriend, who I love and am thinking of a future with, is not an organ donor. He doesn't have any religious beliefs to speak of, but he said he would like to be buried whole.

I lost my lifelong best friend nearly a decade ago as she waited for an organ donation that never came. This issue is kind of important to me. Do I have the right to broach such an intensely personal decision with my boyfriend? How do I do I approach it without putting him on the defensive? I feel that I can talk with him about a lot of things, but I don't want to be unreasonable because I am so emotionally invested in the issue.

This isn't a dealbreaker for me, I don't think. But it is something I want to discuss with him.

Carolyn Hax: Absolutely you can raise this issue with him, and I hope you do. It is intensely personal, and you can start by acknowledging that--but it's also a public health issue. Explain that your experience gives you a different perspective, and ask him if he has considered the possibility that someone close to him might one day need an organ that never materializes. Or, that he himself might.

And if he did need one, and one became available, would he accept it? Or is it okay by him that other people aren't buried whole? Does he think it's morally consistent to live knowing this safety net is there and that he's willing to avail himself of it, but not contribute to it himself?

Then he can revisit his stance, while you revisit your deal-breakers.

_______________________

Of course, for me, it's a non-issue. Anyone I'm dating better be an organ donor!!!! :-D

The Best Birthday

Yesterday was my 26th birthday, and it was the best birthday ever!

First of all, it was a beautiful day. If you know anything about Central Ohio in April, you know that early April, especially, is not known for beautiful days. In fact, most of my birthdays have been pretty gross (I was born during a blizzard, apparently). And if the weather's OK, then it's usually Good Friday or something, so I'm in church.Not that I don't love church, but when your birthday's on Good Friday, it sort of puts a downer on the whole day, you know?

So, it was a lovely day. I had lunch with one of my old friends, which was highly enjoyable, as we got to eat sitting on the High St. steps of the Statehouse, eating put food in the sun and enjoying the great day. sadly, I had session at 1:30 so we had to cut it short.

Then, the best part--Avenue Q with Cindy. It is, bar none, the funniest thing I have seen in my life. I laughed so hard, and I totally want to be Kate Monster (a 25 year old kindergarten teaching assistant who has a crush on Princeton, a 22 year old recent college graduate with "A B.A. in English."). I had so much fun at the show, and, during "The Money Song", Princeton came up to my seat and I got to check him out up close and personal. Cute guy, for someone with orange skin! (Yes, they are puppets.) After the show, I got to purchase one of my favorite things--an autographed show card!! I have a collection of them framed on my wall, which I have been collecting since I was in high school. Now Avenue Q can join the illustrious company of Phantom, Beauty and the Beast, the Lion King and Miss Saigon (I am still in the hunt for a Wicked one). Our seats, in the Palace Theater's mezz, were wonderful (thanks to ticket guru Dad!). This has become my second favorite show and "I can't wait to" see it again!

Of course, I have to thank my donor's family, because without their generosity, I never would have had such a great day. And I was so grateful for it...

New site!

LOOP has updated their website--go check it out!

Home to Avenue Q....

Before my review is up, here are some links:

Rod and the GOP Convention

This town isn't big enough for the two of us...

How do you get to be a Puppeteer? (This one talks about the casting of Carla Renata, who I saw last night)

Bon anniversaire pour moi!

OK, so the birthday isn't until tomorrow, but my book haul is AMAZING, so I thought I'd share!

Cindy & Co. gave me a Half Price books gift card, so I went and bought:
--The Pilgrim's Progress
--Robinson Crusoe
--Carmen and other stories
--Ben-Hur
--Ethan Frome
--Night and Day
--Jacob's Room
--Encore Provence


Mom and Dad bought me the following at Catholica on Saturday:
--B XVI, Way of the Cross,
--Ordinary Work, Extraordinary Grace, Scott Hahn
--Christ Our Joy: The theological vision of Pope Benedict SVI
--The Way of Perfection, St. Teresa of Avila



And then, tonight, I used my B&N giftcard to get:
--Shakespeare, by Peter Akroyd (I've been wanting to read this for years)
--The companion book to The Chronicles of Narnia: Prince Caspian


Whew....lots of reading!

Bookshelf: Notre-Dame de Paris

(AKA: The Hunchback of Notre Dame)

continuing my quest to read as many classics as I can before I die, I recently finished The Hunchback of Notre-Dame (which wasn't Hugo's original title--since the book is mostly about Notre Dame itself, he called it Notre-Dame de Paris. Oh well). While most everyone is familiar with Quasimodo, the bell ringer of Notre Dame and charge of Archdeacon Claude Frollo, the novel itself has very little to do with the characters, as it does the Cathedral and Paris itself. The novel begins with the Festival of Fools, but instead of immediately introducing character, Hugo gives us a description of the Palais of Justice (when I get to Paris, I'm going to know these buildings intimately, thanks to Victor here). Like the much longer Les Miserables, Hugo has a knack for inserting sections of questionable relevance into his narratives.

If your only exposure to the book is through the Disney film you will be very much surprised by the way things actually happened. Some points:

--Djali is a girl
--Esmeralda married a poet/playwright to save his life.
--Esmeralda dies at the end of the novel, as does Quasimodo.
--Phoebus marries his fiancee, rather unwillingly. (And he's a jerk in the novel.)
--Frollo tries to murder Phoebus, but Esmeralda is blamed.
--The Festival of Fools takes place in a palace, and Quasimodo is crowned the "Pope" of fools.
--Quasimodo is deaf from the effects of the bells.
--Initially, he kidnaps Esmeralda, and only at the end of the book does he try to save her.
--The French King appears in the novel
--Quasimodo and Phoebus don't find the Court of Miracles; that's the poet at the beginning.
--Clopin is a thief, not a gypsy.
--Esmeralda is not born a gypsy, she was kidnapped as a child. Her mother figures into the story quite prominently at the end.
--Frollo has a younger brother.

Those are a few points off the top of my head. And obviously there are no singing gargoyles... (or grotesques).

The book itself is relatively good. Hugo does excellent characterizations and possesses a strong power of description. But the book gets bogged down in discussions of architecture and detracts from what could be a very well-paced story. Hugo is constantly noting what time of year it is, and it's a good thing, because without that the reader would have no idea how much time has passed. If you want an introduction to Hugo, this is easier and faster to read than Les Miz, but I think Les Miz is the better story.

People

Tomorrow I get to see my transplant coordinator, Karen, for the first time in at LEAST a year.
I am so excited. :)

follow up

After posting the below about Tricia, I realized that I was feeling, again, the way I had felt when I got my call: a sense of peace and that everything is going to be OK.

I had thought, before transplant, that I would be a wreck. In fact, I prepared Dr. G, the surgeon, and Karen, my coordinator, for that fact. They both promised me that I would be well-sedated, and, indeed, I was. I don't remember anything after I left my parents in pre-op (And I got to give props to them--they really held together. Totally. Now, maybe they didn't I just didn't know it, because my glasses were gone and everything was fuzzy, but I think they did a good job staying together in front of me). I was so calm that I managed to sleep before they finally came and got me round 7 am.

I was calm from the minute we got the call. I never thought it would be a dry run. Since we lived so close to the hospital, I was pretty sure I would only get called if it was a real 'go'. Since my lungs came from MN, Dr. G had to go bronch them, etc., but I still felt, when we got the call around 8:45 that Sunday, that I was going to get them, and that soon I'd be in surgery.

Even looking back I am amazed at my calm. I was a little jittery, but the excited kind of jittery, like you get before you go on a vacation. I tried to pack a bag, which was pretty fruitless. I tried to watch a movie. We prayed. But I didn't sleep until I was on 4AE in a very familiar room, and waiting for what I was sure was going to happen.

Pray, pray, pray!

Tricia is in the OR right now receiving the Gift of Life.


Pray, pray, pray!

More center, less barre

Tonight is the night that Julia, my ballet teacher, says we're moving to more center work, and less barre, since we're progressing.
Thoughts:
1) I am happy we are progressing. Go us!
2) Terrified at the thought of falling on my butt (even though this has never, actually, happened in class. Usually I just fall out of the step or position).

I'll let you know.

Quick updates

OK so I thought I had the computer glitch fixed, and then when I went to write the massive book post, not so much!
So here are some quick notes:

Books I've read lately (with star ratings):

--Anita Diamant, The Red Tent: ****
--Jacquelyn Mitchard, The Breakdown Lane: ****
--Tracy Cheavlier, Burning Bright: ***

Reading now:

--Portrait of a Lady
--Notre-Dame de Paris

Watching:
--Michael Clayton: ****
--Enchanted! Whoohoo! ****
--The Tudors: Season 1: Awesome possum--**** so far. OK, yes, there are mucho historical liberties, but it is so much fun to watch, with excellent acting.
--Disney: Snow White, The Hunchback of Notre Dame

Jane stuff: Sense and Sensibility starts tonight on PBS--USA Today gave it four stars. Go watch it!

Easter was wonderful--great music, great time with family. Pics up soon, if the computer cooperates!

Today I sang at a LOOP Donor Family Recognition event. It was the first time I had ever sung and accompanied myself (via piano) so I was a little nervous. I sang Sarah McLachlan's "I Will Remember You", which went over well, and, Thank God, it was a simple arrangement. Again, if I get pics, I'll put them up (obviously I didn't take them when I was singing!)

Oh, and just a minor thing--Tricia may have lungs! Ha ha! YAY!

Upcoming...

In the words of Lizzy, there is "So much to acquaint you with!"

New books, new movies....news in general. Whew.
And it's coming. I promise. Now that my computer is back and working, we'll have new things up very, very soon!

How long is that list?

From today's Columbus Dispatch:

More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.

Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.

Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.

The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.

Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?

The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.



From the WaPo:

A Survivor of the Waiting List

Wednesday, March 26, 2008; Page A18

The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."

It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.

Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.

DAVID HOLLAR


So, some of my notes:

--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.

I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.

Interesting article

My comments in bold

When a baby is destined to die (what baby isn't?)
Perinatal hospices support families with a terminal prenatal diagnosis
By Linda Dahlstrom
MSNBC.com Health editor
MSNBC
updated 8:24 a.m. ET, Mon., March. 24, 2008

Jeanne Deibert knew as soon as she saw the ultrasound.

It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.

She was his mother. And she felt certain that something was wrong.

As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.

The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.

As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.

As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.

Two choices, both heartbreaking
In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.

“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”

Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.

However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

Both options — to terminate or continue the pregnancy — are heartbreaking.

“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. ... For many families it's their first real parenting decision.”

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering? (Um, ALL Children suffer. Every person suffers. This is not unique.)

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

Meeting Robbie
As Jeanne’s pregnancy continued, she and Steve created a specialized birth plan. It had Robbie’s name at the top and the funeral home’s phone number at the bottom. In the middle they detailed three scenarios: what to do if Robbie was born breathing, what to do if he was not breathing and what to do if his heart wasn’t working. No extreme measures, they decided. And in each scenario, they wanted him in their arms as soon as possible.

“Robbie’s life will be lived with love and honor,” the birth plan stated. (I love that.)

The Deiberts worked with Stepping Stones Pediatric Program to help fulfill that goal. The Seattle perinatal hospice supports families during pregnancy and can help make it possible to bring the baby home after birth if that's what the parents want, says Maureen Horgan, a social worker and the program's coordinator.

When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.

Robbie was barely breathing when he was born on May 18, 2005 at Seattle’s Northwest Hospital. Doctors worked on him for minutes that seemed to stretch on into forever before finally deciding to give him to his parents to hold as he died.

Jeanne, then 40, exhausted from a long labor, drank in the feel of her son in her arms, memorizing every detail. She took in his tiny hands, wide-set eyes and his perfectly shaped ears that she knew probably couldn’t hear.

Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.

“It was clear I was taking him around to say hello and goodbye,” he remembers.

Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.

“My big hope was that his life, however long it was going to be, would be full and not painful,” says Steve. “I would have gladly accepted a miracle, but I didn’t have hopes for him to go to college. We thought, ‘What’s the most we can do for him?’”

‘Things could have been done differently’
The precious hours the Deiberts spent with Robbie in their arms immediately after his birth would have been unheard of in most hospitals only a few decades ago. Doctors and nurses often wouldn’t let parents see their child if they knew the baby was going to die or was stillborn, believing it would be less searing for parents to let go if they’d never said hello.


In 1982, Annette Klein’s daughter was born dead. The staff allowed her to hold Courtney for a few minutes, unusual for the time, but then a doctor brusquely told her, “Well, this has got to end sometime. It’s going to be hard. We may as well just get it over with now.”

But even that brief time was everything. “When I saw her I was filled with this immense mother’s love. … And holding her after her death meant for me that that denial was gone.”


As a nurse herself, she thought about all the other families who didn’t get even the few precious moments she’d had — and wondered what it would have been like if she’d had more time with her daughter.

“I look back and think of all the things that could have been done differently. That was really the impetus,” she says.

Today, Klein, a nurse who specializes in parent education and support at the Birth Center at United Hospital in Minnesota, estimates she’s worked with about 200 families with a terminal prenatal diagnosis, providing one-on-one birthing classes so grieving parents don’t have to sit surrounded by giddy mothers- and fathers-to be. She also offers them their own private tours of the birthing wing and encourages them to start parenting their child in utero since that might be the only time they have with their baby.

“I tell them, ‘You are already a mother and have an amazing opportunity to love them, parent them, sing them their little lullabies,’” she says.


‘Born perfect, except for his heart’
Not all medical caregivers are supportive. Schoonveld, the genetic counselor, has a friend who was told by her doctor that the pregnancy would be so stressful for her that she should terminate. When she decided to continue her pregnancy, “the response she got was, well you might as well not even show up for your appointments because this baby isn’t going to live.” Maureen Horgan, of Stepping Stones, has talked with women whose doctors didn’t see the point in weighing them at their prenatal checkups.

Kuebelbeck hopes to help change that kind of reaction. She is often asked to speak at medical conferences around the United States about perinatal hospice, encouraging doctors and geneticists to support those families who do choose to continue and sharing the story of her son, Gabriel.

Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.

“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”

He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.

Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby and give that baby a peaceful goodbye. That’s not nothing.”

Living life fast
Like Kuebelbeck, the Deiberts wanted to make whatever time Robbie had as rich and loving as possible.

In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends. When he turned 1 week old, they celebrated with a brownie and candle, knowing he wouldn’t be alive to see his first birthday.

“We had the sense we needed to live life fast,” says Jeanne.

When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.

Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.

“I wanted people to experience him,” she says. “And I think he was experiencing being held.”

Jeanne and Steve traded off caring for Robbie in three-hour shifts around the clock. Both of them were terrified each time he dislodged the feeding tube from his nose; if they reinserted it incorrectly it could go into his lungs, which would kill him.

A nurse from Stepping Stones came over nearly every day to see the family and check on Robbie.

“They’d say, ‘Oh, he looks beautiful. You’re doing great. He seems happy.’ It was so reassuring that we were doing the right thing. It helped us to relax because every day we were wondering ‘Is this the day?’ ‘Is this the moment?’ And we knew that they were going to come (when he died). We weren’t going to be alone,” Jeanne says.

At night, Jeanne slept with Robbie cuddled against her chest. She’d heard about other parents of terminally ill children who woke in the morning to find their child dead in the bassinet and she wanted to make sure that didn’t happen. She needed to know the moment her child died, to be with him and see it through.

‘Hold on tight … and let go’
At about 8:15 a.m. on June 16, 2005, Jeanne was in the kitchen with her mother making breakfast. Nestled into a carrier against her chest, Robbie’s breathing began to change. He took a breath … and then a long pause. Then he took another, followed by stillness. Then at last another breath.

Jeanne ran into the bedroom to wake Steve. As she started to describe his breathing pattern, they realized Robbie wasn’t breathing. Jeanne laid him down on the bed beside Steve. “No, no, not yet,” she pleaded over and over as she rubbed Robbie’s cheeks, hoping to prompt him to inhale.

He never took another breath. He had lived for 29 days.

“I think he just turned off,” remembers Steve.

The Deiberts called Stepping Stones and a nurse came over to help prepare Robbie’s body and notify the funeral home.

“It was one of those things you don’t learn in normal parenting manuals — who do you call when your baby has died?” says Jeanne.

Soon friends, family and their priest were filling their home, holding Robbie’s body and loving him, just as they had the day he was born.

“The whole experience was very serene,” she says. “I don’t think we put him down once during that time.”

That morning as Jeanne and Steve sat on the sofa cradling Robbie’s body, their son Stevie walked over and placed his beloved stuffed dog gently on Robbie’s chest, a big brother’s last gift.


The night before Robbie’s funeral, Jeanne hand-lined the small wooden casket a friend had made. While she worked, she envisioned parallel worlds — the real one where Robbie died, but also a glorious imagined one of what it would be like if he’d lived.

As she carved padding from the mattress that had once lined Robbie’s crib and covered it with soft fabric for his coffin, she pretended she was making a Halloween costume for him. While deciding the details of his service, she imagined what it would have been like to plan instead for his wedding years down the road.


Today, the Deiberts first son, Stevie, is now almost 5 and loves trains and puzzles. Sixteen months ago, they had another baby, a little girl named Adele. Jeanne stays home with her kids, and the family still lives in the house where Robbie spent his life. His photos adorn table tops along with pictures of his brother and sister. Jeanne is tenderly keeping mementos from his life, like a hand-made blanket, Robbie's birth announcement and the outfit he wore home from the hospital, so Stevie and Adele can have them when they're older. Robbie’s footprints, forever tiny, hang on the wall.

"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."

© 2008 MSNBC Interactive
URL: http://www.msnbc.msn.com/id/23682263/

Happy Easter!

The self-imposed Holy Week Blog Hiatus is over....so stay tuned for new things. :)

Happy happy!

My cousin Julie gave birth to twin girls yesterday, Lucy and Natasha. I believe they are all doing well.
I can't wait to see them! :)

Forbidden love

This piece from the NY Times beautifully expresses the loneliness CF patients feel, and how some of us deal with it--by breaking the rules.

Plug

Hey, y'all please go vote for me (Journeys of a Catholic Poster Girl) here.

Thanks!

Beads

I was at the "resort" today, and noticed a pamphlet for a new program Children's is starting, called "Stinger's Bravery Beads", which is named after the Blue Jackets' mascot and is funded through the Jacket's Foundation, which helps fight pediatric cancer.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.

Why is that?

I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:

--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)

But there's one on the cancer list that you will NEVER see on the CF list:

--End of treatment

Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.

I think we deserve some beads.

CF genetics 101

I was talking about lung tx and CF with a colleague today, so here is a brief genetic explanation from our discussion

CF is the most common fatal genetic disease in the US, mainly affecting caucasians and certain other ethnic groups. To determine the presence of CF, the following genetic diagram may be helpful.


A= dominant gene a= recessive gene

Most of the time, a dominant gene wins out (obviously) and is seen in the child. Dark hair is a dominant gene, for example.

So, two parents that are Aa and Aa for CF will yield the following chances for each kid:

--AA: Child does not have CF and is NOT a carrier (he has both dominant genes)
--Aa: Child does NOT have CF, but is a CARRIER of CF, meaning that if that person marries another Aa person, they have a 1 in 4 (25%) chance of having a child with CF.
--Aa (same as above)
--aa: Child HAS CF (this would be me).

A family note: recessive genes seem to take the cake in my family. My dad is a dark haired Italian. My mom is a blond German-Irish/Scots. The three of us? See below.

Blizzard Food: Shrimp with Tomato-Feta compote

This is so easy--it takes less than 10 minutes to prepare, and will remind you of summer. A very good thing to be reminded of when you're sitting in 16" of snow.

The Activity Report

Cooking:
--Shrimp with Tomato and Feta compote
--Chicken Piccata
--Brioche (mmmmmm)

Reading:
--Portrait of a Lady
--various cookbooks

Watching (oh, what a list):
--Michael Clayton
--The Interpreter
--Mystic River
--Cinderella Man
--The Passion
--Million Dollar Baby

(Yeah, I didn't go for the light movies...ha ha).

I think it might have finally stopped snowing.

The weather outside is frightful

Some pictures. ...

Last night, 'round 5:00:






This AM, around 11:00:




And around 4:15:

Blizzard Food: Egg Drop Soup and brioche

From Thirty Minute Meals


Stracciatelle: Italian Egg Drop Soup

For every two bowls:
--2 cans (14 oz. each) no-fat, low-sodium chicken broth
--2 eggs
--3 tbsp. grated parmesan cheese
--ground nutmeg (to taste)
--fresh-ground black pepper (to taste--the more pepper, the more heat)
--Handful chopped parsley (I used dried)

Heat broth over medium-high heat. Scramble eggs with cheese, nutmeg and black pepper. As broth comes to a boil, drop broth to a simmer and drizzle the eggs into the pot in a slow stream by scooping eggs into brother with a fork. Drizzle in a circular motion. The result will be rags of eggs in the broth. When the eggs are all incorporated into the broth, add parsley and turn off the heat. Ladle out soup and serve with crusty bread.

(This is also in some Chinese cookbooks, with a few variations, and can be called "egg flower", since the egg pieces seem to "bloom" when they hit the pot.)

The brioche is being made now--for finishing tomorrow.

A blizzard? Really?

Apparently we in Ohio are getting a REAL blizzard. So I figure, if it pans out, I should document it.
Therefore, I will be posting snow pics, snow recipes, snow reads, snow movies...ha ha. Well, OK, basically documenting what happens during a "blizzard."

This may or may not be interesting. But we'll see.

First NOTE: TRAVEL--PLEASE, for the Love of All Things Holy, TURN YOUR LIGHTS ON on the roads! Yes, at 4:00 pm you didn't need light to see your dash. But with blowing snow, other drivers need to see you. Unless you want to be hit.

Some randoms for your Wednesday

Quick add: vote for me!

Ballet class: Is really going well. My second class was on Monday, and I held my releves longer than two of the other girls in class. Go me! (And they were the thin type, which makes you think--healthy, right? At least my abs are stronger. Ha ha!)

Weather: Monday--61 degrees. All the windows open, my sunroof down for the first time this year! Today? Snow. Grossness. It's about 30 something. Ew.

Books: I just finished Oliver Twist. Descriptions: fantastic. Oliver and his plot: excellent. Fleshing out of secondary characters: good. Subplots: too many. Oliver "disappears for the length of a Bible" in some places. We do not need to hear about the Beadle, Mr. Brownlow and Charlotte, etc., etc. once Oliver is done with them. They took up waaay too much time. And did anyone else think the whole Mr. Monk is Oliver's half-brother thing was sort of--random?

Um...

Adele Stan [Ramesh Ponnuru]
makes the feminist case for Obama. A sample:

The feminist rationale for an Obama vote is really quite simple: My grand-niece. Your daughter, if you have one. All the little girls who are growing up at a rather grim hour in American history.

Our nation is sinking deeper into recession. We are mired in a bloody, intractable conflict in Iraq, and may be losing the war in Afghanistan.Our beloved Constitution has been raped and pillaged. Instability and the specter of war threaten every continent. Climate change is hard upon us.

As Lizzie says, "Thank you for my share of the favor, but I don't particularly like your way of getting [presidents]."

Yay!

It's ballet class night!

Since it's an Election Year...

Go vote for me!

Wow, thanks guys!

Catholic Poster Girl (my other blog) has been nominated in the Catholic Blog Awards.

Voting starts on Monday...so, um, vote for me. :)

Meme time!

1) What is the last movie you saw in a theater? Was it good? I am going to see The Other Boleyn Girl tonight, so maybe I should wait on this. BUT the last movie I saw in the theater was Juno, and yes, it was good.

2) What is your favorite tv show? Desperate Housewives

3) What is the last album you bought (or stole from the internet, or burned from a friend) that you loved? Idina Menzel's I Stand.

4) If you were in charge of People Magazine’s Sexiest Person Alive, who would win? Colin Firth. No Questions. :)

5) Who is your favorite artist? (Like art artist) Oh, this is hard. Painting: Monet, Renoir...the Impressionists in general. Singing: Renee Fleming, Josh Groban and most musical theater kids :)

6) What is your favorite musical/opera/play? Musical: Phantom, of course! Opera: La Traviata Play: The Miracle Worker/A Man for All Seasons

7) What do you think is the worst song ever recorded? There are Simply Too Many.

A brief rant on movie reviews

As we know, I like movies. So when a movie I've been anxious to see comes out, I gobble up the reviews so that I can either 1) prepare myself for a good time or 2) shout that the critics don't know what they're talking about.

Case in Point: The Other Boleyn Girl, one of my favorite novels, opens today in its film adaptation. Almost every review I read (except for the one in the Plain Dealer), questioned the historicity of the plot and then reduced the complex emotions of Gregory's characters to that of a "bodice-ripper" (that seems to be the phrase en vogue for describing this film).

Is it too much to ask that reviewers READ the novels the books are taken from? Really. I know a ton of movies come out every year that are based on books, so this might be difficult, next to impossible, or impossible. But in the case where the book is a huge hit (It's sold millions of copies), and is based on historical evidence (and Gregory provides a list of sources she used at the end of her book), then I think, in the interest of a good review, you need to at least glance at the book. If you had, then you would know that Anne and George's alleged sexual relationship is, in fact, not just a random plot twist. The homosexual ring around Anne as Queen is not invented for pique. This is Henry VIII we're talking about--truth is better than fiction.

From the reviews I've read, it does seem like the movie takes a few liberties with the book; namely, the girls' mother, Lady Rochester, is nice in the movie, whereas in the book she is just as interested in grabbing power as her husband and uncle. Mary, apparently, does not have a baby boy in the film, whereas in the book, and actuality, she had two children by Henry VIII, Catherine Knoylls and Henry, Lord Hudson, who became one of Queen Elizabeth I's (his cousin) advisors. The omission of Henry from the plot would weaken the hatred Mary feels for Anne later in the story, since Anne's "adoption" of Henry, without Mary's consent, becomes a key point in their relationship.

Oh, and note to reviewers--you're supposed to like Mary. It's not a failure of the plot to make her not as conniving as her sister. That's the whole POINT.

I'm seeing the movie tomorrow, so I can give a better impression then. But seriously, folks, if you're going to get on a movie for not being historical or messing with facts, or throwing ludicrous things in because they would make the story better, it would behoove you to read the book and the source material. Thank you.

Bloggy Book Club: The Christmas Box

Queen of the Castle has a brief summary up, if you haven't read this and want to know what the heck I'm talking about. :)

This is probably one of the first books I read that I counted as a "If the house was burning down, I would save this book." I first read it when I was 12, after having ordered it from our 7th grade book order. It's a thin, little green novella, with the title in raised gold print and a tiny white snowflake underneath. It is also looking a bit dog-eared by now.

Since the book is very short (under 70 pages), I tore through it on the bus ride home. And then I read it again. And again. And then one more time. And then I discovered he'd written more books. So since then, I have read them all: The Timepiece, The Letter, The Locket, the Looking Glass, the Carousel, The Last Promise, The Sunflower, Finding Noel and The Gift.

In short, I'm addicted to this author.

As both Nutmeg and Queen of the Castle say, if you are a parent, this book has a message for you--to cherish your children's childhood. To, as Richard says in one of his books, "wake up one morning and know that [they'll] be gone." But even if you don't have children, this applies to everyone--to stop and savor each moment, because you're not going to get it again. Every minute is so unique and precious and we need to realize that, instead of constantly thinking "oh when will this be over?" or "I can't wait until I'm________" (fill in with whatever you're waiting for).

I read this book every year at Christmas, and his other books all year round. It's simple message is inspiring.

For more on how R. P. Evans wrote the book, I recommend his autobiographical work, The Christmas Box Miracle.

Call Congress

I take steroids. And yes, I can tell when baseball players lie about taking steroids, because you can clearly see they have "moonface" (Steroid related swelling, which so far I have managed to avoid, unless Dr. A really ramps them up, as he likes to do on rare occasion).

However, I have not yet developed Phenomenal Skills with any sort of Sporting Equipment. But that doesn't mean that I haven't enjoyed other particularly wonderful side effects.

Most of really unpleasant ones--losing or growing excess hair, for example--I have not had to deal with. Thank God. And I am actually on a fairly low maintenance dose of 10 mg/day. And it does make my joints super-happy. Pre-transplant, my joints were Highly Cranky all the time. (I was totally perturbed when Vioxx went off the market. That was a Miracle Drug. I would have gladly dealt with potential cardiac complications 30 years from now if I could take the Blessed Yellow Pill that got me through today.) So there is something good about it. But they do make one area of life sadly complicated.

This is Shopping For Clothes. Now, while my face is normal size (I think), my stomach is not. Weight gain there is especially prominent when you take steroids, and it's sort of out-of-proportion with the rest of your body. Some girls can look like they are six or seven months pregnant while taking these.

So shopping for jeans, skirts, hose, etc. becomes very interesting. You can get things over your hips, but they don't buckle/zipper/close in any way. I actually look at hose sizes now, and wonder, Hmmm, do I go by what my crazy stomach's size is, or the size of my legs? Do I want them to be too big or too small?

With jeans, if it fits the waist, the butt is huge. So I feel like I am swimming in my jeans.

Yes, I am glad I weight more than the 85 pounds I clocked in at pre-transplant. But geez, I do miss having a proportinate body.

I'm a colon

You Are a Colon

You are very orderly and fact driven. You aren't concerned much with theories or dreams... only what's true or untrue. You are brilliant and incredibly learned. Anything you know is well researched. You like to make lists and sort through things step by step. You aren't subject to whim or emotions. Your friends see you as a constant source of knowledge and advice. (But they are a little sick of you being right all of the time!) You excel in: Leadership positions You get along best with: The Semi-Colon

What Punctuation Mark Are You?

Cruisin'

A recent Ohio flap has been about the number of handicapped parking placards that are distributed around the state. Complaining about handicapped parking is isn't new--it tends to surface around Thanksgiving and Christmas, when people see (or think they see--an important distinction) the handicapped spots being abused by people who do not "deserve" a placard.

Now the argument has turned from this to deciding that the state distributes too many handicapped placards, i.e., multiple ones for a single person (if multiple people have to drive that person).

Handicapped parking complaints raise my hackles awfully quick. Pre-transplant, I got a placard. I was commuting to school, and Capital's parking situation was (and is) abhorrent. Without that placard I would have been parking in the hinterlands, lugging about 20 pounds of books on my back to my classes. It would not have flown. And I still have the placard. It's good until October of this year (in Ohio they're four year things). To look at me, both pre- and post-transplant, you would not think I "needed" a spot. I'd be one of those young people that the letters to the editor complain about. Well, I wasn't. I had 23% lung function. I needed that spot, damn it. Even after the transplant, there are times when I've been in the hospital and during the recovery period, I've needed to use it.

I hate the looks I got (and still get, if I use it), from people. A note to the general public: STOP IT. The next time I get one of those looks, I swear I'm going to show that person the surgery scars.

A person who is young can very easily have a heart or lung condition that requires the placard. You don't need to be in a wheelchair or have a broken leg, or whatever. I would even say that they should get FEWER looks, because I never had a wheelchair, so it was just me and my beaten-up lungs trudging toward an entrance. It wasn't like I could push myself there.

I don't know where the debate is currently headed, and I know that there are people who misuse the placards. But can we please get over the idea that only people in wheelchairs or on crutches need these placards? It's outdated and untrue.

Oscarzzzzzz.....

I am a movie nut. I think, at last count, I owned somewhere in the neighborhood of 250 DVDs. (This was not helped by the DVD buying binge I went on this weekend. Hey, Dumbo was $12. I couldn't resist.)

But this has not been a Year for Movies--at least Oscar-wise.

I am generally an Oscar nut, dating back to 1998 when I correctly predicted that Shakespeare In Love would win Best Picture over Saving Private Ryan. Since they, I have assiduously watched the Oscar films, read the latest predictions, and lived for Entertainment Weekly's Oscar issue. From 1998-2004 was really a Golden Time for film. As I look at the films that were nominated in that period, we have movies like Life Is Beautiful, Chocolat, Gladiator, the Lord of the Rings movies, A Beautiful Mind, Chicago, Cold Mountain, Mystic River, Seabiscuit, the Incredibles, Finding Neverland, and Finding Nemo. Some really great movies are in that tally.

2005 was a so-so year. We had Little Miss Sunshine and The Queen in the running, but the Big Prize (finally, I suppose) went to Martin Scorcese's The Departed. I am glad he won after years of "Pick me! Pick me!" yelping with lackluster movies like The Aviator and Gangs of New York (which is the only movie I have ever walked out of). At least we're spared his stuff for awhile. (Can you tell I'm not a fan?)

But this year, I have had interest in 2 movies--Juno, which I saw and enjoyed, and Michael Clayton, which is sitting on the DVD-to-watch pile. And, of course, Ratatouille, which just got relegated to the Best Animated Feature pile, when, as the best reviewed movie of the year, it should've been up for Best Picture. I am not alone in that thought.

And it's not just in the Best Picture category. Russell Crowe and Christian Bale should've received nominations for 3:10 to Yuma. Keri Russell was excellent in Waitress. I loved Becoming Jane, but maybe that's just my Jane fanaticism.

I also saw La Vie En Rose, which has a Best Actress nomination going for it.

So, even though I will not be watching tonight (Faith Sharing and the P&P!!! YES!), I am voting for all things Juno and Ratatouille. Oh, and Enchanted in the song category!

Verdict

CXR--clear
lab work--OK
PFTs--"very consistent" (Dr. A)--yes, they are. They are about 60%. I am nothing if not consistent. :)
NiOx--good.

So everything's fine. I am tired as the devil. So what does that mean? Probably a virus. We did another nasal wash so we'll see what comes of that. Meanwhile, we're just trying to hang tight here.

Time with Todd

So I wasn't supposed to go back to clinic until April.
Ha. Ha.
Going in bright and early tomorrow to have more labs, CXR, the whole shebang, so that we can figure out why I have just enough energy to go to work, but then crash at home and sleep like the dead. And don't want to wake up.
This is not good, especially given that Easter is coming and I need to be at rehearsal, not being a zombie on my couch.

Spontaneous mutation-random thoughts

I've been reading about eugenics lately. No, this is not one of my new fields of study, but it has been prominent (or mentioned) in two books I've read, and it got me thinking.

The idea behind eugenics is that you can "breed out" certain undesirable things by controlling how people procreate. That way you could eliminate obvious things, like genetic disease, but you may be able to prevent things like "anti-social behaviors" (excessive violence, alcoholism, etc.) by sterilizing people or passing sterilization laws. This actually happened in the US in the 20s and 30s--almost half the states had some sort of "voluntary" sterilization laws.

Here's the problem. It doesn't work. Genetics aren't something you can breed out, because the genetic code is always changing. Scientists call it "spontaneous mutation." We adapt. (See Jurassic Park. Remember when they made the dinosaurs all girls so they couldn't breed, and then some changed sex? Human genetic code modifies, too.)

My CF is a case of spontaneous mutation. There is no history on either side of the family, and we looked. No one, that we know of, died early or of anything that could have been CF, but was missed back in the day.

What does this have to do with anything? I'm not sure. But it's something I've been thinking about. In one of the books I read (Second Glance, by Jodi Picoult, which was really good), a character is a genetic counselor, and her clients don't want to pass on things like CF and hemophilia to their kids. So they have embryos tested, and Meredith (the counselor), tells them what embryos are good for implantation. (aka, the "normal" ones) You can bet how I feel about this. There's this idea that a life with a genetic disorder isn't worth having. I hope through my writing I've done my best to show that, even though it's not always a picnic, life is a good thing. If we all wanted a perfect, pain-free life, we'd never get out of our cradles.

The Triumph of the bread :)

After one and a half days...voila! La Brioche!

For the initial bread post, go here.

New L&A!

Up over at Clusters of Crocus.

Book Binge Update

Finished:
--The Interior Castle
--Is Heathcliff a Murderer? (It's essays about different novels, so I only read the ones on novels I had read, which made up about 50% the book. The novels I haven't read? Well, I dealt with that...)

Begun:
--Mysteries of Udolpho (two chapters)
--Jane Austen's letters (the first 10, with a few Tom Lefroy mentions...wink, wink)

And, finally, the madness continues:
Bought:

--Wuthering Heights (OUP--yes I'm giving Emily B. another whirl)
--Oliver Twist
--Measure for Measure (OUP Shakespeare)
--Much Ado About Nothing (Pelican Shakespeare)
--As You Like It (Pelican Shakespeare)

Arriving this week:
--Mrs. Beeton's Book of Household Management (OUP--abridged)

Yup, it's official. My name is Emily, and I'm a book addict.

du Pain

Bread is the most satisfying thing for me to make, in any incarnation--corn bread, loaves of bread, biscuits. It's such a basic food, but so vital to out everyday lives. There's a reason the "Our Father" says "Give Us This Day Our Daily Bread."
So this weekend I have taken to indulging my bread making side, and am currently making some brioche (my first try!) courtsey of Barefoot In Paris. You can find the recipe here.

Another favorite is Irish Soda bread (here), which is an easy to make bread (no yeast or rising)--great for St. Patrick's Day! (Also great for breakfast, spread with a nice thick jam.)

Total Book Binge

I am insane for books. As we know. But this weekend has been truly insane.
So far I have read (in total):

--A Year In Provence
--Toujours Provence
--Little House on the Prairie (again)

I am starting right now:

--The Mysteries of Udolpho (the heroine is named Emily! Yay!), of Northanger Abbey fame. (yes, more Jane!)

I am currently reading:
--Searching for Jane Austen (probably more of this tomorrow)
--Confessions
--Orthodoxy
--The Interior Castle

To begin:
--Jane Austen's letters (is it HUGE, and Cassandra even burned some of them. It's amazing.)
--Little Men
--Was Heathcliff a Murderer? And other questions in 19th Century fiction. I got this and Udolpho today via Amazon, and I flipped through this book to see it has essays on Emma, Mansfield Park, Wuthering Heights, Jane Eyre, Portrait of a Lady, and other novels. This looks AWESOME and like a quick read, so I will probably start it tomorrow.

I also went shopping and bought some new work clothes, AND made scones and blondies, with some cleaning and music on the side.
I am very proud of my productivity. :)

New hobby!

I am going to start knitting. Yup. Because I need something else to do.
Actually I was inspired by my friend Christine, who made this little buddy for a friend's baby. I want to make him. Ergo, I have to learn to knit.
So to Jo Ann's I go tomorrow, for supplies and more scrapbook stuff. It's a long weekend for me, and I think it will involve baking, reading, and being crafty. :) And movies, while I'm being crafty. And possibly more writing.

A(nother) Meme

(because it's Friday and I need some fun)

1. WERE YOU NAMED AFTER ANYONE? Auntie Em in the Wizard of Oz. Do Not Laugh. The fact that it is a Seminal Movie In My Life is incidental.
11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? Nope. But only my pumas have laces, anyway.

12. DO YOU THINK YOU ARE STRONG? Yes.

13. WHAT IS YOUR FAVORITE ICE CREAM? Ice cream in ANY incarnation, but I love dark chocolate peppermint that I mix up at Coldstone Creamery. And yes, that's my sugar allocation for about a week.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE? hair/clothes

15. RED OR PINK? Pink.

16. WHAT IS THE LEAST FAVORITE THING YOU LIKE ABOUT YOURSELF? What, I'm not allowed to like everything? (kidding)

17. WHO DO YOU MISS THE MOST? My family, my godbaby (OK yes he's 10, but give me a break)
18. What shoes and bottoms are you wearing now? My blue and pink pj pants and socks.

19. WHAT WAS THE LAST THING YOU ATE? A Buckeye. :)

20. WHAT ARE YOU LISTENING TO RIGHT NOW? Nothin'. But Idina Menzel is in the car.

21. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? blue.

22. FAVORITE SMELLS? things cooking in the over, garlic sizzling in the skillet, roses, flowers in general, the air by the ocean, my Coco Mademoiselle perfum.

23. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? My mom.

24. FAVORITE SPORTS TO WATCH? Football (high school, college, and pro), college b-ball, hockey, and occasionally golf and tennis. And I love the Olympics!

25. HAIR COLOR? blonde.

26. EYE COLOR? blue.

27. DO YOU WEAR CONTACTS? Yup.

28. FAVORITE FOOD? Pasta. Pasta. More pasta.

29. SCARY MOVIES OR HAPPY ENDINGS? To quote Fauna, "I just love happy endings."

30. LAST MOVIE YOU WATCHED? Becoming Jane (bien sur!)

31. WHAT COLOR SHIRT ARE YOU WEARING? pink

32. SUMMER OR WINTER? Summer.

33. HUGS OR KISSES? Hugs.

34. FAVORITE DESSERT? You put chocolate in it, I'll eat it.

35. WHAT BOOK ARE YOU READING NOW? Let's make that books. "A Year in Provence", "Searching for Jane Austen", "Confessions" (St. Augustine), "The Interior Castle", "Orthodoxy"

36. WHAT IS ON YOUR MOUSE PAD? I got myself an iBook, therefore no mouse pad.

37. WHAT DID YOU WATCH ON T.V. LAST NIGHT? Fox News with Brit Hume.

38. FAVORITE SOUNDS? great music. Babies laughing, cooing, whatever. Kids playing in the swimming pool.

39. ROLLING STONES OR BEATLES? I have no opinion.

40. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME? Orlando.

41. DO YOU HAVE A SPECIAL TALENT? Besides being obsessive about movie quotes? (:-)) my music--singing, especially. My piano playing is about par, but I think it's special given that I mostly taught myself. :)

42. WHERE WERE YOU BORN? Columbus, OH.

Happy Valentine's Day!

OK, so even though I have no love life to speak of, I did get Becoming Jane from my parents for V-Day. So that makes me happy. :)

Wow

OK class was awesome. Really. Seriously.
Because the local weather guys are predicting gloom and doom, there were only three of us at class (and one observer). Normally, the receptionist told me, you get a pretty good turnout. I was in the middle, age-wise. One girl looked to be in high school and the other seemed to be in her early 30s.
Julia (our teacher) was great. We started with a quick mat warm -up, then we did barre, which, amazingly, had not totally deserted me. The teacher liked my ronde de jambs (for you non-French people, those are leg circles). So go me. :) After that we did some more stretching (which is important when you're older), and then center work. OK center work was not quite as cool, given my sense of balance is a bit, um, wobbly. BUT I didn't do too bad on some of the combinations that didn't involve balancing on one leg.
I could not believe how hard I worked. I mean, seriously, treadmill has NOTHING on ballet class. I am going to need some new leotards or I'll be doing laundry every day, especially if I take class twice a week. (They offer Ballet Intro M and Th at the Gahanna school, but this Thursday I've got other meetings.)
Anyway, I didn't fall down and I didn't totally embarrass myself. I bought 12 classes, so I have 11 more to go. And after that, I am going to look awesome. :-D Seriously.
I cannot WAIT for my next class.
(Oh, and tx note--I would NEVER have been able to do this class pre-tx. NEVER.)

Spreading the word

Organ donation seems to be getting a lot of press/notice lately. A few things I've seen:
--Two "Donate Life" stickers on cars (if you want one, email me! I have them!)
--the man next to me at the ballet on Friday was wearing a "donate life" wrist band.
--Organ donation was highlighted in a special section of the Dispatch over the weekend. Buckeye football coach Jim Tressel had an event with three athletes who happen to be organ recipients. One of them said that the 98,000 people currently waiting for a donor represent roughly the capacity of Ohio Stadium. So if everyone in the 'shoe on a Saturday watching the Buckeyes was http://www.blogger.com/img/gl.link.gifan organ donor...we might be doing better in the numbers race.
--And my mug has been plastered around Columbus TV and internet sites are part of Lifeline's new awareness campaign. It's an old picture, though. :)

Of course, if you are NOT yet a donor--you know what to do. Or go here.

Tonight, tonight

won't be just any night. (A little West Side Story for your edification)
I am going to my first ballet class in, oh, many, many moons.
I am a bit nervous. I am going to BalletMet's open teen/adult Ballet Intro class. It's taught by honest to God professionals, not the nice "Miss Robin" I had when I took ballet before! So gulp.
I went out on Saturday and bought a leotard, pants (apparently adults can wear dance pants in class) and ballet flats. I was ridiculously excited to purchase those.
Hopefully it goes well, because I am excited. :)

Culture Cat: Lovestruck

Last night I saw BalletMet's Valentine-themed show, "Lovestruck", which was a bunch of different pieces in three acts.
The first act consisted of a few pieces from their "30x30" performances in August, which involved 30 different choreographers creating a 30 different dances over 30 days (1 per choreographer) to kick off BalletMet's 30th Anniversary Season. "Maquillage" (French for Make-up), a woman's ensemble piece, was the "30x30" selection for the first act. This was followed by Adam Hunt's (a BalletMet dancer and budding choreographer's) piece "Bang, Bang (My Baby Shot Me Down)", a pas de deux set to a Nancy Sinatra song, which I thought was quite well-done. "Everyday people", a solo danced by Jeff Wolfe, was next. It's nice to see male solos every once in awhile, and this was was well-executed.

The highlight of the evening for me was the "Sinatra Suite", a pas de deux by Twyla Thwarp that was originally choreographed for Mikhail Baryshnikov and Elaine Kudo. Tonight Jaime Dee and Jimmy Orrante (two of my favorite dancers) danced to this set of five Sinatra numbers, which included "Strangers In The Night", "All The Way", "That's Life", and "My Way." It concludes with another male solo, set to "One for my baby" (I think). Dee and Orrante were pitch-perfect. Both are wonderfully expressive dancers, and this piece gave them the opportunity to showcase those talents, especially in "That's Life". I could watch them all day.

The second act was a world premiere--"A Different Drummer." Well, different certainly applies here. The entire company was involved in this piece, which I think ran about 15-20 minutes, and was based on the poem of the same name by Thoreau. Vastly different in tone and style than the previous pieces, it grew on me as the dance progressed. Carrie West and Jackson Sarver, in particular, were my favorites.

The third act consisted of three pieces: "Two of Us" and "Sweet", pieces from "30x30", which I had seen being created back in August. "Sweet", danced by Annie Mallonee and Justin Gibbs, is one of my favorite pieces in BalletMet's repertoire and I'm always excited to see it performed, especially by these dancers.

The program wrapped with "Bolero", set to music by Ravel, which had Indian undertones. Emily Ramirez, as the solo dancer, did a fantastic job. She was wonderfully captivating. The sensual nature of this number was a perfect fit for the program.

Fighting the sandman...

This whole flu recovery thing, to use some slang, sucks. OK, yes, it's been worse (duh!), but this constant feeling of "I could close my eyes and sack out for about 12 hours right now" is not the most productive thing in the world.

ON the plus side--I did over a mile on the treadmill today (25 minutes) doing intervals. Woohoo! Laura could hardly believe I'd been sick. So that was awesome.

And yes, my boy Mitt is out of the race. :( Tear. There's always '12. (Is it just me, or does that look really funny?)


And Lent is here, hence the Lenten colors...bring it on!

This weekend: Another Culture Cat--the ballet! And Richelle's 25th birthday party at Martini's (one word: YUM).

Work

Back to work today--woohoo! :)

:-D

I am full of schaeudenfreude right now. It's awesome. :)
Go Giants!

Gee, guys, I'm speechless

Nutmeg says I'm



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The Huge Culture Post

So when you're barred from interacting with humanity for almost a week, you have a lot of time to read, watch, and listen to things. So I give you my massive review round-up (inspired by Amy Welborn).

BOOKS:

--Liberal Fascism: I cannot say enough good things about it. Get thee a copy immediately.
--Wives and Daughters: Still working on this one, but I love Molly and Roger.
--Orthodoxy (still)
--The Interior Castle (again, still)
--The Big Stone Gap series (re-reads)
--Spe Salvi (the Pope's new encyclical)

MOVIES:
--Northanger Abbey (Yes, Jane obsession is in FULL SWING)
--La Vie En Rose: I finished it. I liked Marian Cottilard's portrayal of Edith Piaf, but the film itself I found rather episodic and disjointed. If you are already familiar with her life and career, you will probably find it less disjointed than I did (I knew nothing about her when I started watching it, other than she was a French singer in the 1940s and 50s). But as this movie is in French, and made for a French audience who is (presumably) much more familiar with "The Sparrow's" life and career,
it was not necessary for the filmmakers to give us a truly exhaustive bio-pic.

CDs:
--Idina Menzel, I Stand. I Love her voice, and it's in wonderful form on this new CD. So far "My Own Worst Enemy" is my favorite track.
--Renee Fleming, I Want Magic! (With James Levine and the Metropolitan Opera orchestra): American opera arias (read: it's in English!) with Fleming's glorious voice backed by a phenomenal orchestra.

PSA

A thought--
if you're one of those people who don't get flu shots for WHATEVER reason, can you, please, get them for the rest of humanity? If this week has been any indication for me, the flu without the shot must be infinitely worse than getting it with the shot.
Thank you. :)