What is cystic fibrosis?
From CFF.org (the website for the Cystic Fibrosis Foundation):
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
As a pediatric nurse, I have the privilege to take care of young people with cystic fibrosis on a weekly basis. Because of the nature of their disease, and the rigorous courses of their treatment, these children are often with us for weeks and weeks at a time. We have some children that are fortunate, that we see only every six months to a year or so for a general (what we like to call) “CF Tune Up”. We have some children that are with us five and six times a year for sometimes a month or more at a time. Either way, you can imagine that we get to know these kids pretty well. :) We know their parents, their siblings, their families. Their stories. There are nurses on the floor that have worked there for ten years and have watched some of these children, who are now in their teens, grow up. Every nurse on the floor has a story about at least one of them. We probably each have our “favorites”. :) When I started working at the children’s hospital just over a year ago, it didn’t take long for these patients to become some of my favorites to take care of. They have an undeniable spirit.
Some of you may not know what cystic fibrosis is. Most people tend to think it’s just like living with a chest cold all year long. Growing up, I knew one boy with CF in my high school class, and that is how I remember him. The kid who coughed a lot. I had no idea what a toll this disease takes on the entire body. It affects each and every body system in it’s own way. So many of these kids struggle keeping weight on because of how it affects their digestive system. Most of them have to take several pills with every meal to help their body digest food and use the nutrients. Many of my patients have G-tubes… tubes that go straight into their stomachs. These kids usually are on tube feeds – meaning a pump feeds them a formula either over night, or at scheduled times during the day. It can be a struggle to keep these kids at a healthy weight!
The regimen that cystic fibrosis patients must do on a daily basis is intense. It involves inhaled medications in the form of breathing treatments, chest PT for up to an hour a day, and so many pills and vitamins. All of these things take a lot of time.
Needless to say, it’s hard sometimes to just “be a kid”, when you have CF.
Watch this video to learn more about living with Cystic Fibrosis!
Knowing these kids, loving these kids and their families…. this is why I want to walk for CF in the Great Strides Event. The Cystic Fibrosis Foundation is a leader in medical research, and with their help – we can find a cure for this disease in our lifetime. Last year they raised over 40 million dollars for the cause!
If you are touched, like I am, by these kids and their stories – please consider donating to my Great Strides Campaign! I have a little over a month to hit my goal. Every dollar counts. With your help, we can make CF stand for CURE FOUND!!!!
Click here to donate: