Jen Weber beats the odds of living with cystic fibrosis
But her days were also filled with hospital stays, nebulizer treatments and daily pills to help break down food. Weber was born with cystic fibrosis, or CF, a genetic disease in which the body produces a sticky mucus that clogs airways. This can lead to lung infections and obstruction of the pancreas, according to Joanna Whitaker, development director at the Indiana chapter of the Cystic Fibrosis Foundation.
CF affects about 30,000 people in the U.S. and about 600 children and adults in Indiana, Whitaker says.
About 50 years ago, kids born with CF weren’t expected to live long enough to enter elementary school –– which is why Weber is somewhat of an anomaly.
“They didn’t think I would make it through middle school, and I graduated law school and am now 38 years old,” she says.
She can still remember the tinkle of the ice cubes used to create mist that would help keep moisture in her lungs as she lay in a “misting tent” in the hospital. Her parents and brother would pound on her chest to help break up the mucus.
“He loved getting to hit his sister,” Weber laughs, referring to her brother.
Weber, an attorney for the Indiana Judicial Center and cellist for the Carmel Symphony Orchestra, always looked at the glass as being half full. She stayed optimistic and knew there were other kids in the hospital who were worse off than she was.
“As I looked at it, if this is my lot in life, I’m going to make the best of it,” she says. “Yes, I had CF, but it wasn’t the worst thing in the world to have. CF was not going to define me.”
Several years ago, at age 32, Weber learned she needed a double lung transplant. It was a reality check that CF was starting to win.
“I realized they were telling me I was going to die without a transplant,” she recalls.
In January 2010, Weber received the phone call for which she had waited nearly five long, challenging years. Her new lungs were finally available.
“I got the call around noon, was at the hospital at 4 p.m., went into surgery around 7:30 p.m., and by 7:30 the next morning, I was breathing with new lungs.”
It was an uphill climb. After being on oxygen for so long, she had to relearn how to use muscles and nerves to breathe. She had to learn how to talk in longer sentences and take deep breaths. She had to adjust to life without the oxygen cord constantly connected to her. And she no longer had the twice-daily, two-hour-long breathing treatments.
In order to be physically prepared for the transplant, Weber started signing up for 5K walks. She made a promise to herself that, if she received a transplant, she would run a half-marathon –– which she accomplished twice last year.
“Never in my life would I have thought I could run two in one year,” she says.
That newfound freedom has also allowed her to snorkel in Hawaii and board a plane (no small feat with an oxygen tank) to visit family for Christmas.
She points out that a lung transplant is not a cure for CF; it merely extends one’s life. She’s currently undergoing treatment due to her immune system attacking her lungs. But she still plans on being at the 500 Festival Mini-Marathon on May 5.
Weber is proof that CF “doesn’t have to paralyze you.”
“You can still go out and live your life.”
May is National Cystic Fibrosis Awareness Month. Join in the fight by registering for a Great Strides walk in your area. Find one near you at cff.org/great_strides. For more information on CF, log on cff.org.