Why I blog II

For girls like Jordan: (emphasis mine)

Local teen waits for lung transplant

Brenda Tollett Associate Editor

Ada— As students at Ada High School prepare for summer break, 17-year-old Jordan Lee Ulrich waits for a lung transplant.
The Ada teen was was born with Cystic Fibrosis and has spent much of her young life in hospitals.
“Not a single year has gone by when she didn’t have to be hospitalized,” said Lesa Ulrich, Jordan’s mother. “In 2007 alone, Jordan was admitted to Dallas Children’s Medical Center in February and stayed until April. She was there again in July. In September she went for her transplant evaluation at St. Louis Children’s Hospital in St. Louis, Mo. Shortly after returning to Oklahoma she had to be hospitalized again in Dallas for all of October, November and most of December.”
Now she waits at St. Louis Children’s Hospital for a new lung to become available.
Until late 2007, Lesa Ulrich said her daughter had done surprisingly well. She began having trouble controlling pain in her lungs and couldn’t breath without an oxygen machine.
“On Christmas morning, she wanted to come downstairs to open presents,” Lesa Ulrich said. However, the teen was to weak to walk. Her father, Dr. John Ulrich, carried her down the stairs but within 10 minutes she exausted.
Her routine follow-up appointment with the St. Louis transplant team in March 2008 turned into a three-week hospital stay, leaving the family totally unprepared. “Upon arriving at her appointment, Jordan’s pulmonary function test scores were very bad,” said her mother. “We had actually already checked out of our motel and were on our way home when St. Louis (transplant team) called and asked us to return.”
Hospital officials, according to Lesa Ulrich, were concerned her daughter wasn’t well enough to return to Dallas. Using four of the strongest IV antibiotics, Jordan Ulrich was tested again one week later. Her scores were even lower than before and have continued to drop.
Fundraising for Jordan Ulrich’s transplant is required by the hosptial in St. Louis, according to Lesa Ulrich. In addition to costs associated with the transplant, funds are also needed for transportation, lodging, food, and medical supplies. A transplant fund has been established in Jordan Ulrich’s name at East Central Credit Union, 801 E. Main, Ada.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. According to the Cystic Fibrosis Foundation, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
When the Cystic Fibrosis Foundation was established in 1955, most children did not live to attend elementary school. Today, the predicted median age of survival is 37 years.
People with CF can have a variety of symptoms, including:
✔ very salty-tasting skin;
✔ persistent coughing, at times with phlegm;
✔ frequent lung infections;
✔ wheezing or shortness of breath;
✔ poor growth/weight gain in spite of a good appetite; and
✔ frequent greasy, bulky stools or difficulty in bowel movements.

You know the part that got me? The part about being able to enjoy Christmas for only 10 minutes.

I love Christmas, as anyone who knows me even slightly will tell you. It's such a major event for me. I go hog wild with cards, presents, and church choir stuff. It really is "the most wonderful time of the year." If I could only celebrate for ten minutes....I can't imagine. That's always been a "normal" day for us. I have never (thankfully!) spent it at The Resort.

One year I was on home TPN and lipids and Mom insisted I keep on the "feed" while we opened gifts. I was not happy. But I have always enjoyed Christmas day and our Christmas festivities in general. OK, yes, once I was a Branden's Christmas party doped up on phenergan, but I don't think anyone noticed. :)

Pray that Jordan has a better Christmas this year. She deserves it.

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!