Reflecting on what she’s learned from her daughter, what comes to mind first for Shonda Allen is strength. “So many times, I just don’t know how she does it,” she says. “Alyssa just keeps pushing along. When I see her being so strong, it makes me be strong and say to myself ‘Why can’t I face this little thing in life when she faces something so big every day.’”
Alyssa was diagnosed with cystic fibrosis, a breathing-related condition, when she was just two. To this day, people can be surprised to learn about it when they get to know her. “Sometimes my situation seems out of this world to someone when they find out,” Alyssa, 16, explains. “People can’t see CF. They can’t see if I’m not feeling good. You look healthy even if you’re struggling.”
The question Alyssa is most often asked about CF is if it’s contagious. (It’s not.) It’s a disease people are born with that causes a thick buildup of mucus. The mucus can trap bacteria, clog the airways and lead to recurring infections that damage the lungs and make breathing increasingly difficult over time. It can impact other organs as well.
There is no cure for CF, but managing the condition by keeping the lungs functioning at the highest level possible can make all the difference. Pulmonologist Dr. Ronald Williams and our CF Care Center team have worked with Alyssa through the years. Our program is central Virginia’s only Cystic Fibrosis Foundation Accredited center and they travel from their home in Fredericksburg for this service.
“We couldn’t ask for a better team,” Shonda says. “They really are like family. They’re easy to talk to, really listen to what you have to say, and ask Alyssa for her opinion now that she’s older.”
The team monitors Alyssa’s lungs with special tests and she works hard every day to help keep her lungs functioning as well as possible, or to stay at her baseline – the highest level of function they’re currently able to do. She does two to four 40-minute breathing treatments daily (including one before school) where she’s connected to a nebulizer machine and breathes in medicine to treat bacteria in her lungs. She wears a vibrating vest “designed to shake up my mucus so I can get it out of my system.” A deep-coughing technique helps as well and she takes medicine to maintain function. “They’re coming up with new medicines every day,” Shonda says hopefully, “and she’s currently trying a new one.”
Still, for various reasons, at times her lungs decline. It can happen quickly and when it does Alyssa’s short of breath, extremely tired and coughs a lot. “And I feel frustrated a lot because it messes up my school schedule,” she adds.
At these times, Alyssa sees her team more frequently so they can adjust her regimen to help her get back to her baseline. This can involve more breathing treatments and intravenous drugs given by a home health nurse. Alyssa has a port in her chest (a surgically inserted piece of equipment that connects to an IV) as her arm had so many IVs through the years it caused vein problems.
There are times Alyssa’ lungs reach a point that she needs inpatient care. Shonda estimates she’s been hospitalized 10 times in the past four years with stays lasting two weeks to a month. She’s given IV antibiotics for long periods of time and chest therapy that can’t be done at home every four hours. Thanksgiving and Valentine’s Day are among the holidays she’s spent at CHoR. She celebrated her “Sweet 16” here too. “The nurses sang and brought ice cream and cards,” Alyssa remembers. “They made it special for me and tried to get me home that day too.”
The world goes on while she’s recovering, so Alyssa is very focused on doing everything she needs to do to get back to her baseline. “She’s experienced lots of bumps along the road,” Shonda admits. “Sometimes I’ve been surprised she’s been able to bounce back as far as getting her lungs back to where they need to be. She’s tough.”
A junior in high school, she’s also been able to stay in her grade, even if it means staying up late to get things done. She’s on the yearbook staff and makes time to be social and for shopping (“I love to shop for anything, but I LOVE to shop for other people because it’s more fun in my opinion”). She’s very strong in her faith and the Young Life faith-based program is an important part of her life.
Determined to make plans work
Alyssa’s goal of becoming a nurse practitioner is inspired by the nurses and nurse practitioners who have cared for her. She also has a great role model close to home. Shonda is a nurse and works the night shift at a nursing home so she doesn’t miss appointments and can be by Alyssa’s side during the day if she’s hospitalized. It’s a powerful example of making things work despite challenging circumstances.
Attending community college is the first step in her plan, and Alyssa hopes to start this sooner by graduating a semester early. She also plans to learn to manage her port on her own. This way she won’t have to work around someone else being there.
Alyssa’s determination to have the future she wants reminds Shonda of what she was like as a young child first learning the ropes of battling a lifelong condition. Shonda was preparing to mash up pills to put into her applesauce when Alyssa reached out, grabbed the pills, and took them on her own with water. “And that was that,” Shonda recalls. “She’s always been that way. If she wasn’t, what she has to go through in life would be too hard.”
With such a positive and independent spirit, Alyssa has always found a way to make what’s hard in her life a source of strength. “Cystic fibrosis is not a burden,” she says when she tells people about CF. “It’s what makes me stronger.”