A person living with cystic fibrosis has many important responsibilities, such as making sure they stay on top of their medications, treatments, doctor visits, and so much more. As a 20-year-old college student, I have to deal with not only going to classes and studying everyday, but also taking care of myself which is something I struggle with most.
When I first went off to college in August 2020, words could not describe how excited I was. Obviously, I started college during a global pandemic, but it was so nice living on my own. It was difficult to meet people since we all had to wear masks and there were not many students living on campus due to classes being online. Dining options were limited because of places being closed, and there was not much to do in the area since my college is in the middle of nowhere.
Fast forward to the end of September of 2020, I finally went out to my first college party. It became a regular Thursday, Friday, and Saturday thing. Just standing in a basement filled with loud music, smoke in the air, and Red Solo cups all around until the sun would rise.
It was a different type of feeling having all this freedom — I could go out on a school night and not have to be home at a certain time. It was so nice not having to be nagged all the time by my parents; I could just do whatever I wanted.
Except, I became unmotivated. Not with my schoolwork, but with my health. I just didn’t want to do it all anymore. I know it is very ignorant of me to think that this was okay, especially since I had all these medications and treatments in front of me to help me live longer. I thought I would be fine skipping my treatments and medications for one night. It felt so good I started skipping them every night. My immune system became weaker and I was constantly getting these bad coughs and colds. I just thought it was allergies or something going around campus. My mental and physical health started to decline and I became miserable. I wasn’t getting much sleep at night and was waking up late in the afternoon. I still continued to go out every weekend despite how crappy I felt.
Once my doctors found out that I wasn’t doing my treatments, they were very disappointed in me. They just wanted the best for me. They wanted me to have the ability to live a long, healthy life. My doctor told me “If you stop now, it'll decrease your lung function and affect you later in life.” I didn’t listen. I told them I was too embarrassed to do my lung treatments because my vest was “too noisy” and I was scared that the people next door to me could hear the machine. My doctors encouraged me to apply for the Monarch®, a portable vest I could walk around with that has dramatically reduced noise levels. I got accepted and this new piece of equipment was now mine.
In the spring I joined the Delta Phi Epsilon sorority, and one of our main philanthropies is the Cystic Fibrosis Foundation. All these amazing young women have made it their mission to help cure CF. I remind myself every day that my sisters are helping not only me, but all people living with CF. I have all the support, medications and treatments that I need and I take it all for granted, which is something I need to work on.
This past September, I got so sick I could not even get out of bed to attend in-person classes. I am in a handicapped room all by myself, so I did not really eat much because I couldn’t get up to go to the dining hall. I went for a monthly check-up and I was convinced I had a bacterial infection even though my lung function was stable. I was prescribed antibiotics to take for two weeks and advised to call the doctor if I was still feeling sick. After two weeks I felt like I was in worse condition. I was now sick for three weeks, so my mom took me to the ER. I sat in the waiting room for 10 hours with an IV in my arm. My COVID and flu tests came back negative, my chest x-rays looked fine, but I still felt sicker than I have ever felt before. Once they took me back into a room at the ER, they told my mother and I that they would be keeping me overnight. Eventually I was diagnosed with respiratory syncytial virus (RSV), which babies usually get, but for someone with CF it can really drain you.
It was a nightmare. I had no color to my face and could barely pick my body up. I was in the room at the ER for two nights and then transferred to the hospital. When I got moved, they scheduled me for a PICC line operation so that they could quickly start me on IV antibiotics, so I could feel somewhat alive. For two weeks I laid in that hospital bed sleeping the days away and unable to eat, which resulted in me losing 11 pounds. I missed Halloween and my college's homecoming and felt extremely heartbroken that I was missing out. By the last few days of my hospital stay, I was starting to feel more like myself and began to catch up on my schoolwork. I’ve been in the hospital many times before, but this visit was different because this time I was also taking costly college courses.
This experience changed my outlook on life. I realized that you cannot take life for granted and that your health comes first. Because I wasn't taking care of myself I ended up getting really ill and missed some fun experiences. My advice to any CFers that are about to graduate high school and go off to college, or who are currently in college: I feel you.
I know it is extremely hard to put yourself first when dealing with so much. Some days we just don’t want to do what we have to do, but it’ll only hurt you in the long run.
I want everyone with CF to live a happy and healthy life and accomplish all that you want to in your lifetime. As a motivational speaker who travels and shares their life story with CF, I need to really practice what I preach. I am still trying to motivate myself to put my health first, which comes with growth, but we are all in this together!! I know one day CF will stand for cure found and I want you all to be here to experience it! My CF walk team is Maria’s Miracles because I believe that miracles do come true!
Please reach out to me on social media. I absolutely love meeting new people!
Love, Maria Clark
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