Tuesday, April 15, 2008

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.

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