Receiving My CF Diagnosis at Age 20

I felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.

| 9 min read
Madison Patterson
Madison Patterson
Madison in a hospital gown with her husband.

“Just take more NyQuil™, you’ll feel better then.”  

“Let’s call the doctor to see what medicine they can give you since that didn’t help.”  

“It seems like you have really bad allergies and sinus infections, but here is some medicine that should help clear you up.”  

“That medicine didn’t help? Just take more NyQuil, and you’ll feel better then.” Repeat.  

This was my endless cycle for 19 years. I always wondered why my “bad sinuses” didn’t land me in a specialist’s chair to be evaluated sooner. Once I got married at age 19, I took my health into my own hands and had an allergy test done to see what might be setting me off. The test results came back and the only thing I was allergic to was dust mites. I was told I could have more tests done and, of course, I wanted to! However, a hospital trip beat me to it.

Living in rural Kentucky isn’t for everyone, but I sure love it here. From being involved in the National FFA Organization in high school, to hunting, fishing, watching University of Kentucky play, knowing all my neighbors, cooking great Southern recipes, being patient behind a tractor on the road because I know they’re helping feed the world, the list goes on! I love my life, but there is one thing I would change, which is the mindset of “that would never happen to plain ole me, especially around here.” Because — trust me — it did happen to me.  

While growing up, I had always had a cough and a lump of mucus in my throat. I thought it was normal to feel like this. In school I discovered that no one else could relate to this feeling. I was in and out of the doctor's office frequently. Tests at school were what I hated most. Not because I didn’t study — I was actually an honor student — it was the quietness that I hated. I felt bad if I coughed too loudly or for too long. I would hate to disrupt a classmate! So, I tried to muffle my coughs; but, even then, I still felt as if everyone in the room was watching. Teachers would offer me mints and cough drops to help. If only they knew that it wasn’t that I didn’t feel good that day, it was that I didn’t feel good for years.  

I remember during my senior year of high school I was tired of coughing. I was exhausted from not being able to sleep while laying down — I had to prop myself up. I was tired of hearing comments about how I always coughed, and I needed to get it checked. I was tired of always feeling a lump in my throat and could never get it out. I was tired of being the friend that woke everyone up at a sleepover because I could not stop coughing. I was tired of being the person that watched everyone drink their favorite milkshake while I settled for a Dr. Pepper because I knew the milkshake would really make the lump worse. I was tired of being so scared to even talk because I didn’t want the lump in my throat to make my voice sound badly. I could not live life the way I wanted to.

I watched everyone around me take their voice, their sleep, and their health for granted. I ended up telling one of my friends that I must have a secret disease with no cure because no one else that I knew struggled like I did.

Flash forward to May 2021. I went to the local ER for sharp pains in my chest. My X-ray showed that I had double pneumonia. They ran a lot of tests, and even wanted to have a test done for COVID-19 pneumonia! I tested positive for the flu, and negative for COVID-19, so I politely declined that test. Then they transferred me to a hospital in Evansville, IN. It was the first time in my life I had ever been in an ambulance. While I was there, I was asked so many questions, such as, “do you smoke?” “Have you been exposed to a lot of mold?” “Have you ever been hospitalized?” “Do you always cough like this?” No, no, no, and yes! The doctors then came in and told me that they believe that I have cystic fibrosis, but it is beyond their capabilities to diagnose me, and that I would need to go to Vanderbilt Hospital in Nashville to be seen. My eyes had never been so big. A small-town person like me, going to Nashville to be seen by a doctor? This must be really bad. Paducah, KY seemed more in reach, but not for my case.  

After I healed up enough for discharge, I went home to realize that I won’t be enjoying views of palm trees, but instead I will be seeing the maple and oak trees of Kentucky. You see, I was supposed to be on my honeymoon but, instead, I was in the hospital, and my husband couldn’t even stay the night with me due to COVID-19 restrictions. I guess we should’ve gone somewhere after we got married in March, but it was too cold to go to the beach then! So, we waited until May. Just our luck. 

Our “hospital moon,” however, was one of the biggest blessings in our lives. I was able to cherish the simple things. My husband still took off work and spent the week with me. I had time to watch my sister play softball, I played with my dogs, I cooked supper, and my husband and I ate together when normally one of us would be working. What I cherished the most, however, was my life. I got curious about my expected diagnosis. I looked up cystic fibrosis and found out that there are others that struggle more than me! I found out that our life expectancy is growing as the years pass. I passed judgment to peers because I thought they took their health for granted, yet here I am with a tolerable CF life.

I am blessed to still be here, and I am blessed that I was undiagnosed for 20 years instead of being dead. This has given me a new outlook on life.

In Fall 2021, at age 20, I took a sweat test and was officially diagnosed with cystic fibrosis. I am in no way upset with anyone for not catching that I had CF earlier than the age of 20. There is no one to blame for this and I know God had this planned for a reason. I am forever thankful for His plan, and it has allowed me to look back and be so thankful that I am still here today! Receiving my diagnosis was one of the best days of my life. I am also grateful that Vanderbilt is an hour and a half away from my hometown so that I can get the care that I have long desired. The Vanderbilt pulmonary team is phenomenal and they take great care of me and many other patients. Along with them, my hometown doctors are great, and they are always on the lookout for me. With my diagnosis came breathing treatments and Trikafta® — which has been life changing! I now know that the lump of mucus in my throat is not normal, and it is so freeing to feel like everyone else does. My symptoms are constantly improving with treatments.  

My secret disease, cystic fibrosis, has been the biggest blessing of my life. I am so happy to have my CF diagnosis and I am hopeful for a cure for this awful chronic illness. I can’t thank my husband, family, friends, and care team enough for watching over me and praying that I find answers. Dayquil™ and Nyquil don’t hold a candle to the wonders Trikafta does and I am grateful for that as well. If you take anything away from this blog, I hope that it’s this: Never give up on your gut feeling; trust that your day is coming! Anything can happen to anyone. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Madison Patterson

Madison is a Kentucky woman living with CF. Diagnosed at age 20, her story looks a little different than most. She works as a paraeducator at the middle school in her hometown. Madison is new to the CF community and is learning more and more each day about life with CF and how others face challenges in their lives with CF as well. She is a wife to her husband, Zach, and a mom to three dogs, two of which are blind! Madison can be reached via email with any questions or comments.

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