CF changes life for entire families
Published 12:00 am Tuesday, September 21, 2010
When the words cystic fibrosis are mentioned, what comes to mind? Usually, the first response is, “What is CF,” followed by a series of questions concerning the amount of medications, hospitalizations and treatments. All of these are great questions and concerns, but what is it like living day-to-day for someone with CF and their family? I will answer all of these questions from personal experience.
CF is a genetic disease that occurs by inheriting two defective genes — one from each parent. CF affects the lungs and pancreas. Thick mucus accumulates in the lungs, which causes several breathing problems. The mucus also accumulates in the pancreas, and it blocks the production of digestive enzymes. People with CF are more susceptible to viruses and bacteria than the average person.
My brother, Joshua Forman, was diagnosed with CF at the age of 5 years old. He is now 21 and is continuing to stay in a healthy state as a result of improved medications and therapy. Medication and therapy must come daily and consistently in order for treatments to remain effective. Each morning, Joshua starts with wearing a vest that provides high frequency chest vibrations to mobilize secretions. During the 30 minutes when he’s wearing the vest, he has to take an inhaled dose of Albuterol (for bronchospasms) followed by an inhaled dose of Pulmozyme (to thin the mucus). Once these therapies are completed, he has to take an inhaled dose of Symbicort (for bronchospasms and inflammation). The process in repeated each night. Then it’s time to clean and disinfect the medication delivery devices for the next day. Some people with CF are required to do their treatments and therapy more than twice a day, depending on the progression of the disease.
Anytime Joshua goes somewhere, he has to allow time to do his therapy first. This schedule doesn’t just affect him, but also the whole family. Multiple doctor visits throughout the year are also required.
CF affects oxygenation to the body. Food is not digested and absorbed properly due to the blocked enzyme, which leads to weight loss and fatigue. These factors limit his physical activities. Joshua becomes frustrated at times, because of the time required to do the therapy and physical limitations prevent him from doing as much as the average person.
Our family is very thankful for the improved ways of doing therapy, and the types of treatment that have become available. Hopefully, as medications and treatments improve, the life expectancy of people with CF will continue to grow.
On Saturday, the Great Strides Walk benefitting the Cystic Fibrosis Foundation will take place at Copiah-Lincoln Community College’s Natchez Campus sponsored by the Respiratory Care Technology Program.
Registration starts at 8:30 a.m. at the Redd/Watkins Vocational-Technical Building, and the walk begins at 9:00 a.m. The walk is a 10k (6.2-mile walk). For information or participation, contact Walt Wilson at 601-446-1161 or e-mail walt.wilson@colin.edu.
Cheyenne Forman is a respiratory care technology sophomore at Co-Lin.