Hard-working patient knows cystic fibrosis care then, now
For 31-year-old Jenna Baier, cystic fibrosis (CF) “is definitely a challenge, but you have to realize how blessed you can be even with it. I have met some very inspiring people along my journey, and I realized as I grew up that I wouldn’t have had my work ethic and discipline without CF, and those are things I’m really thankful for now.”
Daily treatments for the lung and digestive disease can last two hours or more.
“I have a vest treatment two times a day to break up the mucus in my lungs, five to six nebulizer treatments a day, and I take around 20 pills a day,” Baier said.
Despite the routine, Baier remains active and works to be healthy.
“The biggest struggle is finding the time to do the things I want to do,” she said. “But I am very involved in my church and love the outdoors. It is so important for patients with cystic fibrosis to stay active because it keeps us healthier.”
Baier credits much of her success to the doctors and staff at Carle.
Carle’s CF team members are Kristin Kieft RN, CPN; Janice Douglas, RRT; Nancy Mings, SW; and Martha Trenkamp, RD, LDN, CDE. Led by Dr. Donald Davison, the team collectively offers more than over 120 years of experience.
“My doctor is the smartest person I have ever met. Dr. Davison has been crucial for me and been tremendous in my support system. Carle responds very quickly to any requests I have, and it has been a life changer,” she said.
For kids with CF, having a good support system makes a huge difference.
The care team at Carle’s Pediatric Specialty Clinic prioritizes individualized care for children.
Because children with CF can be in the hospital for weeks at a time, Carle’s Child Life Specialists create customized plans to help kids cope both with their treatments and the extended stay.
Baier remembers how treatment as a child consisted of her parents pounding her back and her chest.
“My treatment is more advanced now, and new medications developed in the last five to 10 years allow me to further sustain my lung function,” she said.
Kieft knows Baier well and applauds how she manages her CF.
“Jenna is very proactive and responsible in her care. She is highly organized, motivated and successful in life, despite having a serious chronic illness,” Kieft said. “She manages to work her daily CF care into her schedule, even when traveling.
"She has a very supportive husband and family that understand her CF care must be a priority.”
Baier offers these tips for others living with CF:
- Do not be afraid to ask others’ questions—your doctors and care team, other patients and their families.
- Use any and all resources available, especially from your care team and the Cystic Fibrosis Foundation.
- Always stay on top of your medications and doctor appointments.
- Be as active as possible because the more you sit around, the more risk there is for your CF to progress.
- Educate people whenever possible about cystic fibrosis.
Education is important to Baier. She said most people don't realize how complex the disease is and how it can affect many organs of the body. And others likely don’t know that people with CF can’t come in close physical contact with other CF patients because of the possibility of spreading bacteria.
That doesn’t mean they can’t support one another.
“There are opportunities to contact (other people with CF) over the phone, and thankfully now days with social media they’re only a Facebook message, video call or text away,” Baier said.