Cystic fibrosis is a chronic, life-threatening, genetic disease that affects the lungs and digestive system by producing abnormally thick mucus that is hard to clear out and prone to trapping bacteria and viruses. Frequent lung infectious damage the lungs of CF patients, making it progressively difficult for them to breathe.
My name is Maddie and I am a 25-year-old living with cystic fibrosis. I was diagnosed with CF at birth and have been managing it my entire life. Taking medicine and doing treatments has become second nature to me. Every day I take 25 pills, including 4-5 pills every time I eat, and I spend three hours or more doing airway clearance therapies and inhaling five different types of nebulized medications. I have to remind myself to try and eat high-calorie meals as much as possible -- I struggle to gain and maintain my weight just as much, if not more, as those around me struggle to lose weight. I spend countless hours at the doctor's office, performing anxiety-inducing pulmonary function tests, having blood drawn, and getting x-rays or CTs. I spend even more time on the phone with hospital financial people, insurance companies and a variety of pharmacies trying to get procedures, appointments, and prescriptions approved, covered, and refilled. Every year I spend several weeks in the hospital or at home doing IV antibiotics for pulmonary exacerbations. This last year I spent more time on IV antibiotics than off of them. I can't even remember when exactly I started my current course of IV antibiotics because it has become that routine.
Most people don't even know I have CF, and it certainly does not define me. Despite my CF, I played varsity soccer and tennis in high school and studied abroad in Spain for a year during college. I graduated from UW-Madison with a BS in biology and Spanish. Last Spring I started pursuing my MPH in epidemiology at the University of Minnesota and I have been fortunate enough to work part-time at the Department of Health. However, despite my optimism and can-do attitude, life with CF has many challenges that have become increasingly difficult and frequent over the years.
Since graduating from college, my health has taken me on a physical and mental rollercoaster ride, with what seems like more downs than ups. Gone is the naivety of my childhood and teenage years where I was not concerned with the gravity of my disease nor its progressive nature because I truly thought that either I would never get THAT sick or, if I was going down that path, there would be a drug or a cure to save me in time and I would lead a perfectly normal and long life. Well that time has come, and there is no miracle drug or cure for me. But, I still have hope, hope that has been generated through years and years of fundraising that started before I was born, before anyone in my family even knew anything about CF.
Since the CF Foundation was founded in 1955, billions of dollars raised by people like you and me (and $0 in funding from the government) has culminated in life-saving medications, therapies, care, and education that have increased the life expectancy for children with CF from 5 years old in 1955 to 47 years old for children born today; it has brought us to 2019, one of the most exciting times for everyone affected by CF. This year, a new drug that addresses the underlying cause of CF, which has shown remarkable results in clinical trials, is slated to be approved by the FDA. This drug has the potential to benefit 90% of CF patients, including me. Usually I am hesitant to place all of my hope on one new drug or therapy, but to be honest, this is my last chance at regaining lung function, maintaining stable health, and avoiding the physically and mentally grueling challenge of listing and hopefully receiving a double lung transplant, so I am all in. Had it been up to my care team, I would be listed for a double lung transplant right now, but I told them I at least want the opportunity to try this new drug; to endure another year or more of uncertainty, endless IV antibiotics, shortness of breath, crippling body aches, and extreme anxiety about getting so sick I no longer have a choice about transplant, or, god forbid, become ineligible for transplant.
2019 has certainly tested the decision to put off transplant -- I've been on IV antibiotics since the end of January, been hospitalized twice, spent 43 hours waiting in the ER on 3 different occasions, endured chest pains and acute kidney failure, thought I was going to die from the flu, had to withdraw from classes, and missed over two months of work. When I've been home the only thing I've had time and energy to do is sleep and do my treatments. On several occasions I have wanted to give up -- I don't exactly know what giving up even means to me, but I knew I didn't want to keep feeling the way I felt; unable to live my life the way I want to. I often don't have the energy to make dinner or clean my apartment let alone enjoy the things I love most -- playing sports, hiking, walking my dog, biking around town, traveling, hanging out with friends and family. The only thing that keeps me going is the hope that things will get better, and that I have an amazing group of friends and family to support me along the way. Every single dollar raised brings me so such happiness and positive energy -- energy that I desperately need right now.
Help me end the year 8,000 times better than I started it by contributing to my walk team. Your support will strengthen my own fight and the fight of thousands of others affected by CF, many of whom are in the same position as me. Your gift is 100-percent tax deductible. Any amount is greatly appreciated. Thank you for your support!
P.S. check out the video I made about my life with CF by clicking on the youtube link found after the photo above.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.