On June 29, Kathryn Norris received one of the most important calls of her life. After an eight-month wait, her doctors at Duke University Medical Center had located new lungs and a liver for her.
Norris has cystic fibrosis (CF), a genetic disorder that mainly affects the lungs and digestive system. Those with CF are missing a protein that cleans the lungs, resulting in thick mucus buildup that damages the organs and blocks airways. Most people with CF are also pancreatic enzyme insufficient, meaning they can’t absorb nutrients like they should.
There is no cure for CF, only treatments to lessen symptoms. Each morning, Norris woke up early for hourlong treatments that helped manually clean her lungs.
She continued to live life as normally as possible. Before her transplant, she was a full-time student at Maryville College, majoring in design. She was a member of the dance team and choir and was an ALANA diversity scholar.
Despite remaining active and following her treatments, Norris’ condition continued to worsen.
“Everything was an effort,” she said. “Even making my bed, I’d have to stop to rest like three times.”
In May 2017, she learned she would need a double lung and liver transplant. Since her liver was already damaged, the liver transplant would be necessary for a successful lung transplant. Otherwise, medications from the lung transplant would destroy it.
Norris was admitted into the Duke University Medical Center’s transplant program and moved to Durham, N.C., with her dad, Allen Norris, in October 2017. At that time, her lung function was about 28%.
Duke requires that transplant patients have a full-time caregiver for at least a year, so her dad quit his job to take on the responsibility. Kathryn’s mom, Cristina Norris, stayed behind in Tennessee to maintain the health insurance at her job.
“For 22 years Cristina has fought for Kathryn, making sure all the meds were available, organizing, administering,” Allen Norris wrote in a journal post. “She makes the tough calls to the insurance companies, which on its own is like a part-time job.”
Some refer to the transplant program at Duke at “boot camp,” according to Kathryn Norris.
Transplant patients must complete a month of educational courses that cover what life will be like after the transplant, as well as daily physical activity like walking, biking and weight training.
“The sicker you go into surgery, the sicker you’ll come out,” Norris explained.
Ups and downs
Her eight-month wait for new organs was longer than most because the liver and lungs needed to come from the same donor. Otherwise, the chances of rejection were higher.
While in Durham, Norris’ condition continued to deteriorate.
She remembers days she couldn’t even walk around the house and hospitalizations for everything from illness to a punctured lung.
When she received that call in late June, though, she says she was ready.
Most transplant procedures like hers are expected to last around 20 hours. However, thanks to two doctors teaming up on her lungs, her surgery was completed in record time: just under 10 hours.
After surgery, Norris had to practice walking again. She even had to relearn how to eat, drink and cough, because lung transplants destroy nerve endings in the throat.
Despite the struggles of recovery, Norris was determined not to let it get her down.
Through it all, Norris’ family, friends and boyfriend provided unending support. She had family and friends from across the country visit during her recovery, and her parents were her rocks during the process.
“My dad was one of my biggest supporters, and he went out of his way to do stuff for me,” Norris said, recalling him doing her pedicure each week.
Although it’s been seven months since her transplant — nearly as long as she waited for her new organs — Norris said that it is an “ongoing story.” There is always the chance of rejection, and doctors say to anticipate at least one case in the first year.
In addition, the process is expensive and requires that Norris return to Duke every three months for follow-up visits.
“The costs are never-ending,” Norris said. “Transplant doesn’t cure you. It just exchanges one set of problems for others.”
To help offset the expense, her dad started a GoFundMe page during the early stages of her transplant. The page is still up and active for anyone who wishes to donate, at www.gofundme.com/breaths 4kath ryn.
Finishing her degree
Norris is back in Maryville with her family and still adjusting to a lifestyle that is not filled with daily treatments, shortness of breath and tiredness.
Simple things continue to surprise her, like the ease of walking up hills on the Maryville College campus.
Currently, Norris is finishing her final semester at Maryville College.
Even while she was awaiting the transplant at Duke, she was contacting her advisor about her thesis and preparing to finish classes and walk at graduation.
“Kathryn has always been an exceptional student and skilled designer, but her drive and relentless pursuit of her degree, even in the most physically challenging times in her life — fighting for her life — is nothing short of incredible,” said Adrienne Schwarte, associate professor of art and chair of the college’s Fine Arts Division.
A future in focus
Norris’ senior study involves designing a post-transplant-friendly gym, combining her design major with her passion for fitness.
The gym will minimize the spread of germs with copper doorknobs or electronic doors. It will also comply with disability codes. However, Norris stressed that the gym she’s designing would be open to the general public as well.
“It won’t be a medical environment because that really psychologically affects sick people like me,” Norris said.
Durham would be a great place to open a similar gym, she said.
Although she was away for over a year, Norris knew she had to return to complete her degree. “I’m a big overachiever, and I have high expectations for myself.”
She is a personal trainer at National Fitness Center in Maryville, and several of her clients have medical conditions or complications.
Norris hopes to continue growing in the fitness industry and obtain more personal fitness certifications while getting into the best shape of her life.
She also plans to take several trips in the next couple of years, now that traveling is easier than ever.
“I think I was raised to be the best I could be, and that’s what I’m doing,” Norris said. “There’s really no other option.”