MC senior with cystic fibrosis preparing for lung and liver transplant
Just Breathe: MC senior with cystic fibrosis preparing for double lung and liver transplant
By Amy Beth Miller, The Daily Times email@example.com
Hiking up Max Patch in North Carolina with friends recently to watch the sunset, Kathryn Norris told herself reaching the top was a matter of focusing her mind.
Just breathe, she told herself.
A friend’s boyfriend carried the 17-pound oxygen concentrator that Norris must rely on these days.
At the top they celebrated with sparkling apple cider.
Diagnosed at 3 months of age with cystic fibrosis, Norris has never been able to take breathing for granted. Now 21, her lungs have lost nearly 80 percent of their capacity, and her liver is scarred.
As she begins her senior year at Maryville College, Norris is preparing to relocate to North Carolina for a double lung and liver transplant at Duke University Hospital.
Although the transplant and recovery could take up to a year, she is determined to make it back to walk across the stage to graduate with her classmates this coming spring.
“I’ve worked so hard for it,” she said.
Growing up with CF
New parents often check their sleeping infants to see by the slight motion of the blanket that their child is breathing, and that is something Al and Cristina Norris have done now for more than two decades.
“We do that every day,” Al Norris said. “Every time we go into her room, we check the blanket.”
When she was first diagnosed, Kathryn’s parents were told she probably wouldn’t live past the age of 10. The average life expectancy for people with CF has quadrupled since then.
CF is a progressive genetic disease that causes thick mucus in a person’s organs. The warm, sticky liquid in her lungs is a perfect home for bacteria, and simply catching a cold usually will put Norris in the hospital. It also interferes with the function of her liver and her pancreas.
Her mother, Cristina, is from Spain, and the family moved there when Kathryn was young because of the medical coverage available.
“We thought that we would never be able to come back to the U.S. because of a pre-existing condition,” Al Norris said, but when their daughter was 16 they were able to return.
Although their insurance is more than double what it would cost for a family without a member who has CF, he said, “We know we have to pay our share."
Each morning Kathryn Norris goes through a routine that takes about two hours.
She begins with an inhaler, followed by three medication in a nebulizer before she dons a vest that shakes her chest to break up the mucus. That’s followed by breathing exercises, an antibiotic in a nebulizer and two inhaled steroids.
“Then I just do the regular girlie things,” she said.
She takes 15 pills in the morning, 10 at night and four to seven pills every time she eats, to provide the enzymes needed to digest her food.
“Even if we look healthy, it’s an effort to do what other people take for granted,” Norris said of living with CF.
To her, it’s a point of pride to not have a special hang tag to park closer to a store and to walk up the stairs at school rather than take the elevator, but walking up the stairs with her books and laptop takes effort.
Her usually soft speaking voice reflects her frustration when she mentions otherwise healthy people who say they can’t breathe when they have a cold. “It drives me crazy,” she said.
An active lifestyle
Norris remembers when she was a child and breathing was much easier. “I would have one of my friends on my back and would run races,” she recalled.
She was a ballet dancer for about a dozen years and later danced hip-hop for two years before taking some time off after her family moved to Maryville.
Her senior year at Maryville High School, Norris was a sprinter on the track team. After a two-hour practice, she said, “I’d go home, throw up, sleep and do my treatments.”
“When I came to college I found the dance team,” she said.
Dancing on the football field at halftime has been one of her favorite parts of the dance team for the past three years. “It brings you so much energy,” Norris said. In her senior year, however, she will be watching from the sidelines.
That isn’t a description of how Kathryn usually lives. “I’m always on the go,” she said.
She worked for three years at Old Navy. In addition to the dance team, she has been a member of the Maryville College Community Chorus and been a ballroom dance assistant.
As an ALANA Diversity Scholar she attends several diversity events, and she has made the dean’s list.
Norris also is a member of a local philanthropy group that performs different services, from visiting assisted-living facilities to cleaning up streams.
A new calling
A graphic design major, Norris said she always was crafty and enjoyed painting and making gingerbread houses.
When her father made custom woodwork for their houses, she said, “I always wanted to nail the nails.”
And when the family visited the United States each year when they lived in Spain, she wanted to go to the Michaels store to stock up on craft supplies for the entire year.
During one 26-day hospitalization, she worked on about 10 adult coloring books. However, recovering also gave her a new goal.
“I got really sick,” she said. “They didn’t know if I was going to make it.”
A strep infection, pneumonia and sepsis took a heavy toll, leaving her too weak to sit up. “When I would breathe, my whole body would shake,” she said.
“I was on seven antibiotics at one time, she said. “Ever since I left the hospital, I haven’t felt like myself.”
It took both a physical and emotional toll.
However, she began weight lifting at Workout Anytime to regain her strength. “I learned to love it,” she said, and now she wants to earn her certification as a personal trainer to help others.
“I love the progress I’ve made,” she said.
Previously she was lifting 55 pounds and leg pressing 100 pounds. Now she has to take her oxygen to the gym. “I feel defeated,” she said.
As the Norris family prepares for Kathryn and her father to relocate to North Carolina to wait for the transplants, last week she was still trying to process all the information.
“It hasn’t clicked in my head that I’m getting a transplant,” she said.
Al and Kathryn will move to North Carolina for up to a year for the surgery and recovery. Cristina will keep her job as an interpreter at East Tennessee Children’s Hospital so they will retain their insurance but take family leave immediately after the surgery.
As part of the transplant requirements, Kathryn must have a full-time caregiver with no other job, so Al will give up his work landscaping and doing commercial photography.
Kathryn must complete a month of physical therapy before she is put on a transplant list. When the call comes that a transplant is available, they must arrive at the hospital within 30 minutes. If the organs are a good match, the surgery will take more than 20 hours.
To financially prepare for the transplant, Duke has advised the Norris family to raise $85,000 to $100,000, to cover things such as post-operative medication not covered by insurance and other expenses.
A GoFundMe account they set up “breaths 4 kathryn” has raised more than $14,000 in 17 days.
Planning for the future
When she thinks about all the things she’ll be able to do a year after the transplant, Norris said, “That’s what inspires me.”
“I’ll be able to gain weight,” said Norris, who is about 5 feet, 5 inches tall and weighs 114 pounds. “I’ve always wanted to not have chicken legs.”
Norris also looks forward to being able to finish the YouTube training videos of some of her favorite trainers, including Nikki Blackketter and Whitney Simmons.
“I’ll be able to scuba dive,” she said. Because that is so dangerous for people with CF she has only been able to snorkel in Belize, where her father is from.
She may even train for the Transplant Games.
Norris also noted that after a double-lung transplant she no longer will have to do any breathing treatments, which will give her an extra two hours a day.
In the long term, she said, “I want to travel a lot and have a family.” She wants to visit California and scuba dive in Australia. “I would go to Asia just to eat,” she said with a laugh.
A few weeks before the North Carolina hike, Norris had been unable to finish a hike to the Devil’s Bathtub in Virginia.
“That’s one of the things I can’t wait to do, finish all the hikes I haven’t finished,” she said.
Her father said, “I’m going to lose a tear when she takes a full breath of air for the first time.”
**To donate to Kathryn's GoFundMe account, please visit https://www.gofundme.com/breaths4kathryn
Maryville College is ideally situated in Maryville, Tenn., between the Great Smoky Mountains National Park and Knoxville, the state's third largest city. Founded in 1819, it is the 12th oldest institution of higher learning in the South and maintains an affiliation with the Presbyterian Church (USA). Known for offering its students a rigorous and highly personal experience that includes an undergraduate research requirement, Maryville College is a nationally ranked institution of higher learning that successfully joins the liberal arts and professional preparation. Total enrollment for the Fall 2017 semester is 1,181.