Every Breath They Take

68 NJ RESIDENTS await a life-saving lung transplant, relying on oxygen to breathe and keeping strong physically and mentally for when the call comes. Here, two double-lung transplant recipients—and a patient waiting—describe what life is like before and after transplant surgery.

Dawn Burke: Waiting since September 2017

Dawn Burke believes in the power of prayer and positive thinking. The 59-year-old resident of Keyport starts and ends her day by praying. She also keeps affirmations posted around her home, including her favorite: No matter how you feel, get up, dress up, show up and never give up.

Dawn is a patient at Newark Beth Israel Medical Center awaiting a life-saving doublelung transplant. For years, a chronic cough went undiagnosed until she was told in 2016 she suffered from idiopathic pulmonary fibrosis (IPF), a disease that causes permanent scarring in the lungs. She was placed on the transplant waiting list in September 2017.

“I’m no longer able to work and everyday tasks leave me short of breath,” says Dawn.

“Although I try to maintain my independence, it’s becoming increasingly difficult to do things on my own.”

As a patient waiting, Dawn must remain within two hours of her transplant center should a suitable donor become available. She also attends pulmonary rehabilitation sessions at Monmouth Medical Center twice a week, as well as weekly yoga classes. It’s important for her to be physically fit for surgery, as she’s been told, the stronger you go in, the faster you will recover.

Luckily for Dawn, her support system is wide. Family members and friends are ready to serve as caregivers after her transplant. They call and visit frequently and have helped her with rides, meals and whatever else she might need—and she looks forward to monthly card game nights with her pals. Once a month, she goes to a support meeting at Newark Beth Israel Medical Center where transplant recipients share their stories with patients waiting and help answer their questions.

“Sometimes you feel like you are the only one going through something,” she says. “The group gives me hope and it comforts me to hear their stories. One woman who received a double-lung transplant at Newark Beth Israel has become a mentor and a friend.”

A life-saving transplant would allow Dawn to return to the activities she loves, like gardening, photography and socializing, as well as achieve the dream of visiting her son who lives in Hawaii.

“It’s something I’ve been thinking about lately,” she says, “Hopefully I’ll be getting there soon.”

Sarah Steinhauser: Six months post transplant

As a college student, Sarah Steinhauser relied on oxygen to breathe, needed a feeding tube for nourishment, and, unable to walk long distances, was shuttled from class to class at Montclair State University.

The lifelong Montville resident was born with bronchiectasis, a condition in which the walls of the bronchi thicken causing mucus to build up in the airways. From infancy, Sarah struggled to catch her breath. Her health took a turn for the worse in her early twenties, and she was placed on the waitlist for a double-lung transplant.

In October 2018, a respiratory virus comprised her immune system and she was admitted into the Hospital of Pennsylvania Transplant Center in Philadelphia, where she was kept under close watch in the ICU. In less than a week, she received the incredible news—a deceased donor had been identified as a match—and she underwent life-saving surgery.

Sarah will never forget the moment her breathing tube was removed and, for the first time, took a deep breath without assistance thanks to her donor’s gifts.

“It was mind blowing. It almost felt like a dream,” she says. “Tougher than the physical recovery was accepting that I didn’t need that breathing tube. I was so used to having the oxygen, it was a safety blanket for me.”

The 27-year-old is slowly returning to normal life. She monitors her health on a daily basis, taking her temperature and blood pressure and checking her heart rate. She is focused on eating healthy and remaining active.

The little things are making the biggest difference, says Sarah’s mother, Valerie Wagner. “Recently, she was able to spend a night with family without having to go upstairs to rest or use her nebulizer. My heart goes out to her.”

LAST YEAR’S #SAVENJLIVES campaign led Sarah to connect with NJ Sharing Network.

Sarah has not yet received clearance to work or travel, but she looks forward to a vacation, ideally somewhere tropical. On the horizon, she sees starting a career and moving into a place of her own.

One thing she is ready for—to give back. Sarah first learned about NJ Sharing Network before her transplant surgery when she saw information about the organization’s #SaveNJLives initiative at Mara’s Café and Bakery in Denville. Sarah looked into NJ Sharing Network and decided to attend an Advocacy Night and became a Certified Volunteer.

“I love sharing my story to help raise awareness for organ donation,” she says.

Sarah is truly an inspiration. She proudly shares that despite the obstacles she faced in college, she never missed a day of school.

Darryl Price: Three years post-transplant

Darryl Price had barely been sick a day in his life when, at age 52, he was diagnosed with idiopathic pulmonary fibrosis. After doing some research on the internet, he asked his doctor flat out, “Am I going to die?”

The Denville resident had a successful career as a software engineer. He had recently returned to college to finish his bachelor’s degree. In his spare time, he traveled and played competitive tennis. Now, he was being told he suffered from a fatal condition and would need a double-lung transplant to survive.

During his time waiting, Darryl remained positive and kept busy. He took up photography and videography, and volunteered at a food pantry in Morristown. Staying active helped him get through this difficult period and he encourages transplant patients to not stop living while waiting.

“Don’t disappear from the world,” he says. “Whatever you are interested in—learning a language, playing an instrument, traveling— don’t let the doubts and setbacks keep you from doing these things.”

The outlook for Darryl was grim in the months before his life-saving transplant surgery on June 24, 2016. Once he received his second chance at life, he immediately began setting new goals, telling his medical team that he wanted to be running by the time he finished rehabilitation and playing tennis within six months of returning home. It was also important for him to recover his independence, assuring his wife he would ask for help when he needed it.

WAITING, IN HIS OWN WORDS “Everybody’s journey is different. In my case, the disease progressed pretty quickly and I had to have oxygen 24/7 whether at home or out shooting pictures,” says Darryl. “It wasn’t long before I had to start using my hover board whenever there was walking involved.”

At 57, Darryl is living life to the fullest. He earns money through freelance coding projects and videography gigs. He participates in running events and shares his story as a volunteer for NJ Sharing Network.

He’s also brushing up on his Japanese. Later this year, Darryl plans on spending three weeks touring Japan, where he once lived and worked but wishes he had spent more time exploring. His goal is to create a travelogue and perhaps spark an appetite for adventure in others.

Darryl admits there have been bumps in the road. Health setbacks have left him feeling discouraged. “You deal with it,” he says, “and you try to see every day as a new opportunity.”

He has given much thought to what it means to “honor the gift.” Personal achievement? Making the most of your second chance at life? Yes and yes. But his definition has evolved. “Honoring the gift also means being the best version of yourself that you can; to inspire and encourage those who sorely need inspiration and encouragement. It means being known not so much for the gift you have received as for the love and kindness you show others.”

2019 CIRCLE OF LIFE NJSharingNetwork.org