Living with Cystic Fibrosis
Hi, I am Paige Filipe and I have Cystic Fibrosis. For those of you who are not familiar with Cystic Fibrosis, it is a life threatening genetic disorder affecting the lungs and the digestive system. Approximately 30,000 children and adults suffer with it in the United States and 70,000 worldwide. In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs causing lung infections which eventually leads to needing a lung transplant. It also obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
I was born in Massachusetts where my parents had to constantly feed me because I was very malnourished, I persistently ran a low grade temperature and I was always spitting up mucus. The doctors in Massachusetts could not figure out what was wrong with me. It was until we moved to Florida and after some horrifying events concerning me I was finally diagnosed at the age of two. The doctors diagnosed me by performing a “Sweat Test”. A sweat test is still the golden standard of diagnosing people today.
Initially after being diagnosed I was required to take all the standard medication they had available back then to maintain CF. They had told my parents that I probably would only see my teens or early 20’s and that I would only have a 40 percent chance of being able to become pregnant and have children. I can’t imagine what was going through my parents head, nor have I ever wanted to know. The treatments and maintenance of CF on a daily basis is extensive. I personally am required to do 4 breathing treatments a day, my vest that loosens up the mucus so I can rid my lungs of it and prevent infection twice a day, and take around 30-40 pills a day to maintain my digestive track and keep my vitamin levels up. This takes about 3-4 hours a day of my time that I must dedicate to maintain my Cystic Fibrosis.
Throughout my life I have been constantly hospitalized for different infections in my lungs and routine cleanouts. The purpose of routine cleanouts for CF is to minimize infection in the lungs, improve lung function, and improve nutritional status. Depending on your personal situation determines how often you are hospitalized. Once your lungs reach a certain lung function 30% or below, they cannot recover and you are put on the lung transplant list. I luckily have not yet experienced that low percentage of lung function as my lowest has been in the 50% range and I try to maintain around a 70%. I know one day I will have to go down that road, but I am not ready for that yet. Many CF patients opt out of receiving new lungs because it is trading one problem for another. The risks and after care of a lung transplant is overwhelming. Most CF patients would like to live out the time they have left being happy and carefree with no added stress.
Unfortunately at this time the government doesn’t provide any help to improve our medications or for finding a cure, although with fundraising and awareness we can help our CF community to live a better life. The advancements they have made over the last 15 years are incredible. With new research, medication, and ways to maintain our CF has brought the average life expectancy to 37 years old compared to children only living to see elementary school in the 80’s. I am 24 years old, have a beautiful daughter, a wonderful fiancé, amazing family and friends, attending college to have an exciting and enjoyable career and trying to live and love life to the fullest. I don’t let Cystic Fibrosis control me, I control Cystic Fibrosis.