Lara’s Long Road to New Lungs

The alarm goes off and I smack my smartphone asleep. I sit up and try to breathe deep.

Nothing.

My nose is completely stuffed up and instead of a breath, I get a cough. I've been battling this head cold for a week now. I take a hot shower, trying to clear out my sinuses to no avail. This cold is a stubborn one. But life doesn't stop for your illness, especially when you have deadlines to make.

I put some clothes on, grab some tea and head out the door to the office. Sitting down in the studio, I get everything set up for the day’s interview. After turning the recording console on, I dial a Colorado area code, and wait for an answer on the other line.

"Hi, Bill!", A full-breathed, energetic Lara Marsh says on the other line.

"Hi, Lara!", I say right back in time to hack up more mucus. Lara's energy and warmth can be felt all the way through the phone line.

Lara, diagnosed with Cystic Fibrosis since age four, is recovering from a double lung transplant she received a month earlier. Before the surgery, she was hard at work as the Artistic Coordinator of the Nebraska Theatre Caravan, preparing two Christmas Carol tours and looking ahead to The Fantasticks.

Now, Marsh’s days are spent recuperating with the support of doctors, friends, family, and most of all, her husband Craig. The recovery process is slow and she’s already itching to get back to work. Lara’s never been one to sit still for long, especially as a child growing up alongside her sister Amy, both of whom developed the disease.

Cystic Fibrosis, or “CF”, is a recessive genetic disorder, primarily affecting the lungs, that causes frequent mucus buildup and lung infections, eventually damaging them beyond repair and jeopardizing other organs in the process.

But even as a young child, Marsh wasn’t going to let her condition stop her.

“My parents were always honest and upfront with me about CF,” she said. “What it was going to do to me, how it would act, and, ultimately, what my fate was. I remember being very young, 8 years old, and making the decision that if I had the chance to get a transplant, I would do it.”

Her sister’s chance came first. Normally the picture of health, Amy’s symptoms were never as severe as Lara’s, who spent much time out of school sick. “Then,” Lara said, “one summer day day she caught a cold and it changed our whole world.”

When living with CF, even the smallest illness can quickly turn into a lethal affliction. While Lara slowly improved, Amy’s infection started what would become a seven-year downward trend.

She needed a transplant.

Amy made it through surgery but the recovery process was met with several complications. Three months after surgery, it was decided that she needed a second transplant. During the second procedure, more complications (including her other failing organs) were too much to overcome.

Amy passed away at age 18.

“I was really angry for a long time,” Lara said. “Being only 18 and not having a chance to live her life. I was angry for her, not for me. I remember very clearly the day we turned the machines off. They sat me down and had a serious conversation with me. ‘Don’t let this affect you,’ they said. ‘We don’t want this to discourage you from having a transplant.’ Looking back, I understand why they had that conversation with me. They never needed to sway me though. I already made my decision long ago.”

While waiting for her time, Marsh found solace in art. Coming out of high school she looked to major in visual art in college. Then, in 1995, she attended the performances of Shadowlands and Lost in Yonkers at the Omaha Community Playhouse.

“They really moved me,” Marsh said. “I enjoyed it so much that I decided ‘I want to volunteer here!’ Next thing I know I was a spotlight operator for The Music Man. It ran for six weeks and it changed my life. I walked out of there, not wanting the show to end, went over to UNO, changed my major to drama and I’ve been with it ever since.”

Lara never let her condition slow down her work at The Playhouse, often stage managing four or five shows a season. She quickly developed a reputation as one of the hardest working and most enjoyable personalities in the organization.

In the early years, the details of her CF weren’t widely known, though she never hid her condition from anyone. Time past until the devastating moment came when Lara, the picture of reliability at The Playhouse, had to drop out of stage managing A Streetcar Named Desire because of her illness.

It was time to make the big push towards a transplant.

While staying in as good of health as possible, Marsh’s name was placed on the transplant list. A charity fund was set up called the “Places Please Effort to Support Lara Marsh” to help offset the eventual costs of surgery and recovery.

After a false alarm in August, the call came in November that a healthy pair of lungs were ready for Lara in Denver. One quick flight and more than 10 hours of surgery later, Lara’s procedure was a success.

Now, Lara’s next step is recovery. With her husband Craig by her side, the next few months are crucial in making sure everything heals according to plan. The two of them said the outpouring of support from friends, family, and even strangers in the Omaha community has been overwhelming.

“Just knowing that we’re not going through this alone. A card or email or text message means the world.” Craig said.

The best part about this whole process, they said, is the awareness being raised about Cystic Fibrosis and the life-saving capabilities of organ donation.

“I’m wondering at what point people are going to get tired of seeing my face!” Lara said, laughing. “I’ve had people reach out to me, people I don’t even know tell me their stories. Parents who have just learned that their child has CF and want to know what the next step is. People tell me that they have become organ donors now.”

Craig agreed that this experience gives optimism that more people will consider becoming organ donors. “There are more recipients waiting out there than there are donors.” Craig said. “100-200 people can benefit from just one donor. That’s a lot of lives changed and a lot of lives saved.”

Above all, the surgery has given the Marshes something that was always uncertain. Time and Hope. 

“I guess that’s part of my future too,” said Lara, “to keep that hope for people active.”

We wrap up the interview and I finish up the rest of my work before going down to The Bluebarn Theatre for a show. My own, less serious illness seems to have subsided and my coughing and body aches are no more. As I walk out of the building and get into my car, Lara's words remain in my head.

I go to the bank to make a deposit and the teller asks for some identification. Reaching into my pocket, I pull out my wallet and hand the teller my ID. When she returns it, I don't put it back right away. I hold it in my hands a moment and look at the bottom right hand corner. A small red heart with the letter 'Y' in the middle of it. Above it reads the word ‘Donor’.

"Everything alright, sir?" The teller asks me.

"Great," I said smiling back. "Enjoy the rest of your day."

As I make my way toward the door, I realize that my cold is finally gone. I walk outside, and take my first real breath of the day.

For more information on the “Places Please Effort to Support Lara Marsh”, visit www.cotaforlaram.com.

 

 

posted at 10:00 pm
on Wednesday, December 11th, 2013

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