Norris finishing final semester after life-saving transplant
March 22, 2019
On June 29, 2018, Kathryn Norris ’19 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.
Her whole life, Kathryn has lived with cystic fibrosis (CF). It’s 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, Kathryn woke up early for hour-long treatments that helped manually clean her lungs.
While bearing the burden of CF, Kathryn continued to live life as normally as possible. Before her transplant, she was a full-time student at Maryville College, majoring in design. She danced on the dance team, participated in choir and was an ALANA diversity scholar.
Despite remaining active and following her treatments, her condition continued to worsen.
“Everything was an effort,” Kathryn 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.
She was admitted into the Duke University Medical Center’s transplant program and moved to Durham with her dad, Allen Norris, in October 2017. At that time, her lung function was around only 28 percent.
Since Duke requires that transplant patients have a full-time caregiver for at least one year, her dad quit his job to take on the responsibility. However, Kathryn’s mom, Cristina Norris, stayed behind in Tennessee to maintain the health insurance at her job. It was a necessary but tough decision.
“For 22 years Cristina has fought for Kathryn, making sure all the meds were available, organizing, administering,” Allen wrote in a journal post. “She makes the tough calls to the insurance companies, which on its own is like a part-time job.”
The transplant program at Duke is no breeze. According to Kathryn, some refer to the program as “boot camp.” Transplant patients are required to 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. However, the level of precautions at Duke was only reassurance to Kathryn and Allen that they had come to the right place. They knew it was important to properly prepare for the transplant.
“The sicker you go into surgery,” she explained, “the sicker you’ll come out.”
Ups and downs
Her eight-month wait for new organs was full of ups and downs and 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, Kathryn’s 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 doesn’t remember feeling scared. She just remembers feeling ready.
“I did not cry; I was not emotional; I was just ready for it,” Kathryn said.
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. In just under 10 hours, Kathryn’s entire life changed.
What she remembers the most in the days immediately following her transplant was the pain. She required an epidural and several pain medications to manage it.
“Every day is a different day,” Kathryn said. “You could be completely fine one hour and the next in excruciating pain.”
After surgery, Kathryn had to practice walking again. She remembers only taking a few steps the first time they stood her up. She even had to relearn how to eat, drink and even cough since lung transplants destroy nerve endings in the throat.
Despite the struggles of recovery, Kathryn was determined not to let it get her down.
“You really have to be mentally strong about it,” Kathryn said. “Even if you’re hurting, you have to push through.”
Through it all, Kathryn’s 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,” Kathryn said, recalling him doing her pedicure each week.
However, she knows the transplant process put a strain on her parents. Not only was it difficult being apart for nearly a year, but it also was difficult for them to see her in such a deteriorated state.
“I think it was honestly harder for them [my parents] than it was for me,” Kathryn said. “I’ve always been mentally tough just because I’ve lived with it, and I know nothing different from it.”
Although it’s been seven months since her transplant – nearly as long as she waited for her new organs, Kathryn said that it is an “ongoing story.” There is always the chance of rejection no matter how far along in the process you are, and doctors say to anticipate at least one case in the first year.
In addition, her family is still bearing the financial burden of transplantation. The process is expensive and requires that Kathryn return to Duke every three months for follow-up visits.
“The costs are never ending,” Kathryn said. “Transplant doesn’t cure you. It just exchanges one set of problems for others.”
To help offset the costs, 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.
“Kathryn’s mother and I have covered her medical expenses to date, but this next step is beyond us,” Allen wrote on the GoFundMe homepage. “Relocation expenses, lost salaries and medical expenses add up fast.”
Finishing her degree
Kathryn has now recovered from her transplant and is back in Maryville with her family. Allen is relieved to see his daughter full of so much energy, but in a journal entry about Kathryn’s journey, he acknowledges that Kathryn’s freedom came at a heavy price.
“All this was made possible by her donor, who in losing his life, gave her life, gave her hope, gave her a future,” Allen said. “Thank you, my friend.”
Kathryn and her family are still adjusting to a lifestyle that is not filled with daily treatments, shortness of breath and tiredness.
“You get used to not doing therapies so easily,” Kathryn said. “Now I wake up like 30 minutes before I have to go somewhere to get ready.”
Simple things continue to surprise her, like the ease of walking up hills on the MC campus. She doesn’t find treks from the Clayton Center for the Arts to Sutton Science Center daunting anymore because she can finally breathe properly.
Currently, Kathryn is finishing her final semester at Maryville College, a feat of which her advisor, Adrienne Schwarte, couldn’t be prouder.
“All throughout Kathryn’s time at Duke University Hospital, while she was patiently waiting for her transplants, she was in contact with me regarding her thesis work, preparing plans for her return to campus to finish her classes and be ready to walk at graduation,” said Schwarte, associate professor of art and chair of the College’s Fine Arts Division. “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.
“I’m proud of every student that graduates from our program at MC,” Schwarte continued, “but this is one designer that when she walks across that stage to get her degree, well, I’m pretty sure my heart will skip a beat.”
A future in focus
Kathryn’s Senior Study involves the design of a post-transplant-friendly gym. The project combines 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, Kathryn 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,” Kathryn said.
The concept for her thesis is something Kathryn said she may pursue in the future, and she thinks that Durham would be a great place to open a similar gym.
Although she was away for over a year, Kathryn knew she had to return to complete her degree. She didn’t want to leave any unfinished business.
“I wouldn’t feel proud of myself if I didn’t finish,” Kathryn said. “I’m a big overachiever, and I have high expectations for myself.”
In addition to finishing school, Kathryn is a personal trainer at National Fitness Center in Maryville. Several of her clients also have medical conditions or complications. And although she’s not accepting new clients right now, she hopes to open her schedule to full-time after graduation.
Kathryn hopes to continue growing in the fitness industry and obtain more personal fitness certifications while getting into the best shape of her life.
She has a lot to look forward to in her personal life, as well. She’s taking several trips in the next couple of years, now that traveling is easier than ever, and she’s excited spend more time with her boyfriend, Kenneth Horne ’18, whom she met at MC.
The transplant has opened Kathryn up to a future full of opportunity, and most importantly, she can now breathe easily.
“I think I was raised to be the best I could be, and that’s what I’m doing,” Kathryn said. “There’s really no other option.”
Written by Evy Linkous ’16