Chrystal Moldenhauer, a cystic fibrosis (CF) patient diagnosed at three months old, has seen a dramatic improvement in her quality of life thanks to advances in medicine and a dedicated care team at Sanford Health. Once burdened by daily treatments lasting up to eight hours and frequent hospital stays, Chrystal now enjoys a life with fewer limitations, highlighting the significant impact of modern CF therapies.
A Lifetime of Managing Cystic Fibrosis
Cystic fibrosis is a genetic disorder affecting the exocrine glands, leading to thick mucus secretions that primarily impact the lungs, digestive system, and sinuses. For Chrystal, the main challenge has been recurrent lung infections. As a child, she faced a grim prognosis, as CF was often considered a childhood illness due to low survival rates. However, medical advancements, including the vest machine for clearing lung secretions and improved medications, have significantly extended the life expectancy and quality of life for CF patients.
"I’ve found real lasting partnerships with the care team here in Sioux Falls at Sanford," Chrystal said, emphasizing the importance of a collaborative approach to her healthcare.
The Impact of Kalydeco and Comprehensive Care
Chrystal has actively participated in drug trials, including those for Kalydeco, a medication that has revolutionized CF treatment for many. The third iteration of the drug, which she began taking in 2019, led to a near-immediate improvement in her condition.
"When I took it the first time, within an hour or two, it was like reverse drowning, in a way," she explained, describing how the medication thinned her lung secretions, providing significant relief. Her husband, Lucas, noted the physical toll CF had taken on her, with severe coughing fits sometimes leading to cracked ribs. Now, she can laugh without fear of triggering a coughing episode.
A New Lease on Life
Since starting the new medication, Chrystal's daily routine has transformed. She now spends only a fraction of the time on therapies, allowing her to homeschool her daughter, engage in extracurricular activities, and manage her farm. "Basically, I can do whatever I want," she said.
Chrystal's care team at Sanford Health, including nurse practitioner Nancy Foss and pharmacist Stacy Peters, credit her dedication to treatment and proactive approach to managing her condition as key factors in her improved health. Foss emphasized that "Cystic fibrosis is a lifetime of having to diligently perform treatments, monitoring your symptoms and being so careful about infection."
Improved Survival Rates and Future Outlook
The Cystic Fibrosis Foundation reports that in 2022, the median age at death for people with CF was 66 years, and their life expectancy was only 12% lower than that of healthy people. This represents a significant increase compared to when Chrystal was born, when life expectancy for women with CF was less than 20 years. Improved survival rates are attributed to better lung function, fewer lung exacerbations, and the development of new medications targeting the CFTR gene.
Chrystal's story exemplifies the progress made in CF treatment and the importance of comprehensive care, patient involvement, and ongoing research to further improve the lives of those living with this challenging condition.
