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Post by Samantha Johnson

The Uncertainties of Life as a CF College Student

When deciding to attend a college 1,000 miles away from my home and care team, I always had daunting thoughts of “what ifs” swirling around in my head, but I was determined not to let CF dictate my life and force me to stay close to home. My doctors, family, and team at Boston Children’s had developed a thorough plan for my move for months- everything from theshipments of medications to potential unforeseen health issues. However, there was nothing they or I could have done to prepare for what had happened to me my first semester.

I woke up on the morning of Halloween, a crisp October morning with a burst of energy and attended my classes as per usual. The day started off as my version of “normal”, with completing my vest, nebs, puffs, sprays, and pills. I was more exuberant than normal that day because it was Halloween, and I was excited to get dressed up with all my friends. As the day progressed, I developed a persistent case of heartburn, despite how many antacid pills I took (which are usually my savior). At this point, it was 2 hours before my friends and I were going to celebrate our first ever Halloween at college. They had already started getting ready, and, as I try to rise out of bed, my heartburn and stomachache consumed me. I ran outside in a panic as the pain became so severe I was unable to walk. I was engulfed and suffocating in pain, as the pulsating heartburn turned into severe stabs of stomach pain unlike anything I have ever experienced before. By this time, I was unable to stand up. I was on the ground, doubled over in the lobby of my dorm building, trying to hold in my sobs, filled with suffering and fear. I did not know what was going on or why this wave of debilitating pain came over me. I held on as long as I could, but at 2am, I rushed to the Emergency Department, alone and scared. All my friends were still out having a good time and I did not want to be a burden to any of them, so, I summoned all my inner courage and convinced myself I could do this all alone. Off I went to the ED.

As I entered the ED with tears in my eyes, I struggled to explain the extent of my pain tothe triage nurse, while also ensuring they were taking the right precautions for my CF. This hospital was completely foreign to me, the only emergency room I have ever been in was Boston Childrens’. All I wanted at that moment was for my mom to be there. I kept wishing that some miracle could happen and she could be right there by my side, because when she is there, everything is okay. I had to navigate this alone. I was admitted, received multiple tests, x-rays, blood draws, IVs, scans, and pain medication, which revealed I had strangulating bowel adhesions as a result of the surgery I previously had to treat my jejunal atresia when I was born. Amidst my grogginess from pain medications, I was startled when the doctor came in and told me that I must undergo emergency surgery. I remember thinking to myself, “I never thought this could happen, not to me. I had heard these stories of other CFers going through similar situations, but I was feeling so well, I was blind-sided that this happened so quickly”. It felt like I was in a nightmare hoping to wake up any second. When the reality of surgery set in, anxiety overwhelmed me. Fortunately, my dad was able to make it to the hospital just a few hours before my surgery, and my mom flew in the next day. My memories of the pain before surgery consist of flashes of images of empathetic nurses surrounding me, squeezing my hands as stomach pain pulsed through my body. Through my screams and cries for help, all they could do was assure me it was going to be okay, but in the moment, I felt like I was stuck, stuck in a broken body that is set out to hurt me. CF had never affected me in the way this acute incident had, and I was scared. Was this pain going to become a new normal? Are more events going to happen like this one? Is this just the beginning?

These images melted into the blinding lights and astringent smell of the operating room, and next thing I know I am awake, and my mom was beside me holding my hand. With the pain of my surgical incisions, it made it difficult to take deep breaths and move around or complete any respiratory treatments. My oxygen saturation was dropping, and my chest x-ray results worsened.

I was shocked when a pulmonologist came in and told me I needed to begin a 2-week course of IV antibiotics to treat a new lung infection. Right when I thought my stomach suffering was enough, now I had to complete a course of IVs? It all seemed unfair. After 10 days in the hospital, I completed another week of IV’s by myself in my dorm room. Three times a day, I administered and mixed my medications, while still recovering from my surgery. This was very difficult, and the questions of “why me” filled my head. Looking back, I can now say that this experience made me grow immensely, and fostered my independence and self-reliance in ways that I never thought I was capable of.

Going back to my dorm, I was scared and nervous about how I could manage IVs and recovery by myself. I had never done this before without the help of my family. However, I felt empowered after every dose of IVs I completed. I was also nervous about returning to my dorm and my roommate, and how my new friends were going to see me, with the PICC line, IV pole and a new 7-inch scar on my stomach. They were aware that I had CF, but it had never been so visible before. Were they going to treat me differently or pity me? All I wanted was to feel like

me, not like a girl who was sick. My friends offered to help me, whether it was running errands or wrapping my PICC line for showers. Even though I just met these people months ago, we had formed an amazing supportive friendship. I am now writing about this experience 4 months later, in my second semester at USC, and I made it! I am stronger, wiser, and a more independent version of myself today because of the struggles I have overcome. As I get older, I have discovered I have the strength inside me to persevere through anything life throws at me. I realize I have the power over CF, it does not have power over me.

Other posts by Samantha Johnson

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.