April 27, 2018

How Organ Donation Gave Lola “A Whole New Life”

By Karen Vernon

“It changed everything.”

That’s what Lola O’Brien says about the bilateral lung transplant she underwent in December 2016.

Lola, an office professional with CarePartners Home Health, says as that year began she was facing the fact that she was about to die. She had struggled for 20 years with pulmonary fibrosis, a progressive disease that causes scarring of the lungs.

At the time of her diagnosis back in late 1995, Lola was 26 years old, raising her own two children and a nephew. She was placed on continuous oxygen, and in her words, “I just struggled on.” She began pulmonary rehab, which she describes as “extraordinary – the best thing I could ever do.” She regained strength and learned breathing techniques, and relied on a scooter to get around as her disease progressed.

By the time she began work at CarePartners in July 2014, she was continuing her pulmonary rehab through HeartPath. “It was such a struggle,” she says. “I look back now and say, ‘How in the world?’” Lola says she was using 30 liters of oxygen to get through her rehab sessions, and just getting to work was a challenge. “I’d drive my van to work, park in the handicap space and sit on the back of the van to rest. Then I’d pull the scooter out and sit on it to rest again.”

Lola and her doctors had previously explored the idea of lung transplant, but two consultations at Duke indicated she was not a candidate. By late 2015, Lola was doing her own research about other transplant options and learned UNC-Chapel Hill might be a possibility. When she became ill with what she thinks was flu in January 2016, Lola knew she had to do something. Relying on her earlier research, she visited Chapel Hill and found she could be a candidate for transplant.

“This was a blessing; it was meant to be,” Lola says now. After completing a six-month “transplant class” series, she was given a lung allocation score (LAS), a numerical value from 1-100 used to assess priority for lung donations. Her score was fairly low, but within a few months was reassessed at 50. And the waiting began.

On the evening of December 18, 2016, Lola and her husband were at home when they got the call from Chapel Hill that changed their lives, letting them know they had a donor. She says her husband sprang into action to get them to Chapel Hill that night, getting a speeding ticket (later dismissed) on the way. The next day, December 19, Lola underwent bilateral lung transplant surgery, spending the next several days sedated and on life support in the ICU. “I woke up on Christmas Eve,” Lola says.

For the next three months she and her husband stayed in Chapel Hill, finally coming home on March 23, 2017. Along the way, Lola advocated for herself and future transplant recipients, finding ways to get very expensive medicines direct from the manufacturer and sharing that information with the team at Chapel Hill. Her advocacy for organ donation continues – she’s training with LifeShare of The Carolinas to be an advocate through their program. She’s a registered organ donor herself, because she knows firsthand that this gift “allows someone else to live.”

Lola doesn’t know the name of the person who gave her a new chance at life. She did receive a letter recently, via the transplant team at Chapel Hill, from the woman’s sister, and it included a photo. Lola is preparing her own letter in response, which she’ll send back to the transplant team.

When asked what’s changed for her, Lola says, “Everything.” She mentions everyday things, like playing in the backyard with her grandchildren, pushing them on the swing, walking to the park and welcoming two new grandchildren – one last September and another in March. “That has been amazing.”

Now, when Lola goes to work at CarePartners, she parks in the most distant parking lot. “I walk those 40 steps up from the lower lot, walk past the handicap space I used to use and I can’t believe I’m even doing this,” Lola says. “The fact that I can just go somewhere without three oxygen tanks, after 20 years of doing that!

“If I died today,” Lola says, “I have lived more in the past 16 months than I had in the past 20 years. This is just a whole new life.”

To learn more about organ donation and how you can give the gift of life, visit donatelifenc.org.