Spotlight Story Program: Caroline’s Story

Meet Caroline Wallendal

Life as a teenager is challenging and complicated for anyone.  Add on top of that a life-threatening and changing illness like Cystic Fibrosis, and it is clear that every day brings its own unique experiences. Caroline Wallendal has not let her illness slow her down, in fact, she has used her experiences to strengthen her in all her achievements.

Even if I may look like a normal 16-year-old girl, there’s a lot more to me that most people don’t usually see. When I was just three months old, I was diagnosed with cystic fibrosis (CF). CF is defined as a genetic disorder mainly affecting the lungs and digestive system, but most definitions can’t describe the impact that it can take on one’s life. When I was younger, I did get sick and have some days that I felt like I just had to stay in bed, but I have been fortunate that I don’t have long stays in the hospital as often as some patients do. Even though I didn’t get super sick too often, I still had many challenges and I wouldn’t consider myself as having a “normal” childhood. I always had to take extra precautions in school and I couldn’t participate in all activities like everybody else because of my health.

Being a child and teen with a chronic illness means that I had to learn to be more responsible and more mature than most of the people I know. Having cystic fibrosis means that I take around forty pills everyday, I do three treatments everyday, and I have frequent trips to the doctor and I will have to spend a good amount of time in the hospital. My treatments include doing two inhalers, hypertonic saline, and putting on a vest that is connected to a machine which will shake the mucus in my lungs. As for my pills, I take several vitamins, CF-specific medicines, extra antibiotics when I am more sick than usual, and pancreatic enzymes every time that I eat.

High school is stressful for everybody, but balancing high school with a chronic illness is an even bigger challenge. It became necessary to devote a certain amount of time to school, some time to my social life, and even more time to managing my health. While I wanted to be with my friends, I knew that I sometimes had to make a decision to stay home and make sure that I was doing the best thing for my health. During my sophomore year of high school, I had two hospital stays. The second one was especially difficult since I was out of school for a little over a week and I still had a long recovery at home (including doing home IVs and extra treatments). Catching up in school was hard; from making up a large amount of work, trying to explain to some teachers that didn’t quite understand that I still didn’t feel well after I came home, and having classmates wondering where I was for the past week.

Getting special accommodations in school isn’t something that one should wish for, but I had many people telling me, “You’re allowed to turn in assignments late? That’s not fair!” or “Seriously? You don’t have to do gym? You’re so lucky!” Meanwhile, I was struggling with my health and feeling miserable, so it was obviously hard to hear people that didn’t know much about me saying that I was lucky and it wasn’t fair how I had different arrangements on some assignments. What they don’t realize is that managing daily pain, spending hours on treatments, going to several doctors over an hour away, and taking handfuls of medicines everyday is not what most people would call “lucky”. I would rather turn in my assignments on time like most students, but that doesn’t always work out for me. My health comes before school and I always did my best even if I wasn’t feeling up to it.

The time that I have spent in the hospital isn’t always as bad as some may think. While I spent a decent amount of time enduring unpleasant procedures and tests, I always knew that my healthcare team wanted only the best for me. They were there to help my health, but I also know that they wanted to make sure that I was happy and I wasn’t getting too bored in my room. Being a CF patient, I am not allowed to leave my room when I am in the hospital due to cross-infection. For this reason, it was very important for the child life department to make sure that I had enough to keep me entertained without leaving my room for a week.

Since I am treated at the Children’s Hospital of Philadelphia, the main focus is children. I am a teen in a pediatric hospital, and while I do love it, I sometimes wish that there were more options to make teens such as myself feel more accounted for in the pediatric setting. For example, there are several games and activities for younger children, but I feel as if there should be more activities or crafts for teens. Furthermore, I find it necessary to find more activities for teens that are not allowed out of their rooms while staying in the hospital.

Dealing with my health has been a challenge throughout my life, but it has also helped me to become who I am today. Daily life with cystic fibrosis has helped me to become responsible and organized, it has helped me to pick out the few friends that will always support me, and it has helped me to not take anything for granted.