The Living Breathing Wendy on Cystic Fibrosis

My cousin Wendy from America has very kindly written a blog on Cystic Fibrosis and what it is like living with CF.  Please visit her blog on www.thelivingbreathingwendy.com for more of her posts!

What is Cystic Fibrosis?

As defined by the Cystic Fibrosis Foundation, “Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.” However, it is so much more than that. Treating Cystic Fibrosis requires hours of treatment and taking several pills every single day just to prolong life. Currently there is no cure for CF, but the life expectancy has almost doubled in the last 20 years.

What was it like growing up with Cystic Fibrosis?

I grew up just like any other kid. I went to school, played with my friends, and just had a little extra to do. I had to get up a little earlier to get treatments done before school and come home right away to do another treatment. I also never got a perfect attendance award because I was constantly missing school for doctor’s appointments, and when I was sick it often took me much longer to recover.  Luckily, my diagnosis was caught very early because I happened to be born just as they were starting a new screening study. Therefore, they were able to start treatments early on and prevented a lot of permanent damage that many kids acquire before they are diagnosed. This along with the hard work of my parents to make sure I kept with my daily treatments allowed me to have an extremely healthy childhood. I wasn’t even hospitalised until I was 15 years old, which is incredible!

Transitioning into Adulthood

This is probably the hardest aspect of life with Cystic Fibrosis that I have had to deal with. I am a part of the first major group of Cystic Fibrosis patients to have made it to adulthood, which means that there aren’t a lot of wiser people out there to look up to or get advice from (who have actually been through what I am going through). This is one of the reasons that I am so adamant about sharing my story and making sure people feel welcome in talking with me. Going off to college was a really big change that took a lot of work to get used to. All of a sudden I was completely accountable for my actions. I was also totally responsible for my health on a daily basis. All at the same time I was gaining other responsibilities, such as rent and food. It was a lot to bear, especially on top of the stress of a full-time college curriculum. It definitely got to me and was a huge struggle to overcome. I got really sick one summer and knew that I needed to be focusing on my health better or all of my efforts in school and other parts of my life wouldn’t matter. I began writing about my experiences to cope with the struggles of everything I had been going through. I then learned that I could help others cope with the struggles of living with Cystic Fibrosis. Since then I have become a huge advocate for Cystic Fibrosis awareness. I love connecting and helping others who are affected by CF.

What does a typical day with Cystic Fibrosis look like?

When I wake up in the morning, I am already exhausted. I spent a lot of the night coughing and sleeping horribly because of it. I have to wake up almost 2 hours before I need to go anywhere so that I have time to get ready. It takes me quite a while just to get moving. I spend the first hour sitting, waking up. If I get moving too quickly in the morning, then I just fall into huge coughing fits and feel miserable. After I am awake enough, I do my morning therapy. That takes about 45 minutes. Then I usually go to work or do housework or whatever else I feel like doing. In the middle of the day, I do another therapy session that takes another 45 minutes to complete. Then I can go about my evening business. At the end of my day, I finish off by doing a slightly longer therapy session. This one takes about an hour or so to complete. On top of all the airway clearance therapy, I take an incredible number of pills every day. By the end of the day, I have usually consumed about 30 pills. They consist of pancreatic enzymes to digest my food, vitamins to keep my body healthy, ibuprofen to control my sinuses, steroids to control inflammation, and others. Between coughing and all the energy I spend on treatments and breathing, I am almost always extremely exhausted by the end of the day. I am happy that at this point, I am still able to live my life fairly normally.

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