My Cystic Fibrosis

Most people who have Cystic Fibrosis are diagnosed when they are still babies. I, on the other hand, wasn't diagnosed until I was 6 years old. Because I was so active when I was little, I didn't show much of the lung symptoms that come along with CF. I had a lot of problems with my digestion, and my mom had to take me to 3 pediatricians before one could figure out what was wrong with me.

As soon as I got the diagnosis, I started seeing a CF specialist at Children's Hospital. My parents decided to do everything they could to help find a cure. They started raising money for the Great Strides walk that first year and have every year since then. That has rubbed off on me which is why I started this blog and work so hard to raise money each year.

After starting with my CF specialist, I quickly accumulated new treatments and medications. When I was 10 years old, I got my first vest. The machine was a lot bigger than the one I have now. I thought it was the coolest "toy" ever. My how times change!

My health stayed relatively good through high school. For college, I moved away from home and quickly got used to the freedom. I didn't have my parents reminding me to do my treatments all the time, and I loved it! I started skipping treatments. It got to the point where I was skipping more than I was doing. My lung function started declining pretty drastically. August after I graduated from MTSU, I went to the doctor and found out that my lung function was down to 34%, and I had lost 10 pounds. My doctor told me that it was time to start thinking about the future possibility of a lung transplant.

So, the next thing I had to do was go to a Vanderbilt transplant doctor to get set up in the system. Since finding out the terrifying news that I might be close to needing new lungs, I stepped it up and began working really hard to take better care of myself. Since then, I have raised my lung function almost 30%! It is an on-going battle, but I'm going to keep fighting.

2 comments:

  1. Hi Kayla, I have CF too. At the moment my lungs are really struggling and I desperately want to increase my lung function. How did you do it? My email address is lorna.roche@hotmail.com . Hope you're keeping well :)

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  2. Hi Kayla! My name is Alexa. I just discovered your blog and I love it. I have CF too! Its nice to read about your journey and sympathize with your struggle. I hope you are doing well.

    I would love to connect with you and talk more! My email is alexaciancimino@gmail.com :)

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