Lola Ferguson (12) takes 20 pills every day. Having done so from a young age, she said that over time, she’s gotten used to the process and can swallow up to 15 at once.
“Every meal, I have to take a few pills to help me digest my food,” Ferguson said. “And then I also take a bunch of vitamins and liver pills, pancreas pills, and the Trikafta drug. I take about 15 or so for every meal. And I have to make sure I’m eating enough fat and protein to accommodate for that.”
Ferguson is living with cystic fibrosis (CF), a genetic disease she was diagnosed with at birth.
“It affects pretty much every organ system in my body,” Ferguson said. “My lungs and my digestive system are the most affected. It also causes diabetes because it affects my pancreas.”
While her day-to-day routine is affected by CF, it also affects what she can do in school. For example, she can’t play sports because of the effect CF has on her lungs, and she has to plan her classes to accommodate her daily treatments and overall wellness.
“Generally, I have to keep very good track of my health: eating well, exercising, and getting enough sleep,” Ferguson said. “There are a lot of things that I might miss out on because I can’t juggle that and my health. Sometimes it means taking fewer classes because I need more sleep. I have to be very independent with a lot of things. I need to stay on top of treatments and keep myself healthy, which can be difficult when juggling college applications and high school things.”
Part of her everyday routine that looks different than someone who doesn’t have CF’s is hour-long treatments called chest percussion therapy.
“I have a vest connected to a machine, it pumps air into the vest and it shakes me up to loosen the mucus in my lungs,” Ferguson said. “I can get infections really easily because there’s a lot of mucus in my body. Doing [chest percussion therapy] limits the mucus and prevents infections.”
Ferguson, like many other high school seniors, is now preparing for her life after high school graduation, even though when she was younger, it wasn’t something she expected. She said that this has been made possible thanks to new treatments that have emerged in recent years.
“When I was born, the lifespan for someone with CF was in the 30s,” Ferguson said. “Now, it’s in the late 50s. There’s been a lot of changes in the science community around it. There’s a new drug called Trikafta, which is by a company called Vertex that does a lot of really good work for people with CF. I used to be really sick when I was younger. I would be in the hospital a lot. I had to do hours and hours of treatments, but now it’s very manageable. It’s a lot more accessible to get medications now, which makes having CF easier.”
Ferguson has also taken an active role in volunteering and speaking at events for the CF Foundation.
“Since I was really young, I’ve been a kind of poster child for the CF Foundation,” Ferguson said. “Some experiences I’ve had are seeing others’ perspectives when at speeches or events, and finding similarities and differences with my own. Everyone faces a different CF battle, but most of us can relate to frequent infections, illness, diabetes, and other extreme complications. It’s been interesting to go to these events and see the people who are either fundraising for the foundation or actively creating drugs to help cure me.”
Ferguson plans to stay in California for college and study creative writing. She said that her brother, who also has CF, is currently studying at UCSD and living in a dorm there. She’s found that staying closer to home will make receiving the medical care she needs easier.
“My mom helps us with getting our prescriptions and filling our pill cases, and she brings them to my brother,” Ferguson said. “It’s convenient to stay in California because I’m closer, and I have more access to CF stuff. There’s a big population of people with CF [in San Diego] and there’s a lot of really good doctors, clinics, and hospitals for it. ”
Ferguson expects she will need to adapt her college experience to accommodate living with CF. She’ll have to create a schedule and a living situation that works for her while staying organized with her treatments and medications.
“I have to bring my treatments with me,” Ferguson said. “They’re kind of loud and they take up space. One nice thing is that I’m going to have a room by myself.”
When she was younger, Ferguson said that she didn’t think her life would look like how it does now. She said that as she’s gotten older, more and more doors have been opened for her future.
“My whole family didn’t totally expect that I would be this healthy right now,” Ferguson said. “When I was younger, I was in and out of the hospital, I was sick with so much stuff, and I was barely going to school. It was surprising to see how, during the end of elementary school and going into middle school, there were a lot more opportunities to be involved in things because my health slowly got better as treatments got better. I’m grateful that I can engage with the high school life that I wanted because I never thought that I would.”
While maintaining her health is still something she has to think about, she has found ways to balance that with enjoying the high school experience.
“Moments like Prom and other events when I could stay up late, dance, be away from home for a long time, and sometimes skip a lung treatment so I had more time were unthinkable when I was younger,” Ferguson said. “My #1 concern was my health and everything else was second. But now those things are still burdens but they don’t run my life.”
