Meet the 2024 Scholars

"Describe a defining moment in your journey with CF that sparked personal growth or resilience. How did this experience affect you and what did you learn from this moment? "

I was diagnosed with cystic fibrosis a mere two weeks after my third birthday, the constant demands embedded into my earliest memories. Although I enjoyed a childhood of make believe and little league, there were moments when cystic fibrosis was front and center. Numerous pills, breathing treatments, surgeries and hospitalizations were a routine part of my life. Having an invisible disease is both a blessing and a curse. People see me for who I am, not the disease that I have. At the same time, it creates a barrier when I need to be heard. One of the greatest weapons in this fight is me, my voice. Unfortunately, I had to learn this the hard way. My journey with CF has given me a number of defining moments. Perhaps the greatest of these occurred when I was 14 years old. Hospitalized for an exacerbation, I knew that my port would be accessed for treatment. This port-a-cath had been with me since I was 12, convenient whenever hospitalized but a burden to be flushed monthly. I was constantly told that I had a tricky port, and this stay proved no different. After two nurses, three attempts, extreme soreness, and a heightened sense of panic, the nurse was relieved to have finally achieved a successful IV placement. However, it didn't feel right to me. I explained this, but my concerns were dismissed. The nurse finally agreed to bring in the IV team, and they agreed with the nurse. These were professionals and specialists. What did I know? I began to doubt myself and reluctantly backed down, nervous and anxious the whole night. The next day, my port site was painful and extremely swollen. An ultrasound verified that it was not, in fact, accurately placed. I knew it! I was right! I was also hurting and stressed out about another placement attempt. This could have been disastrous, and I was lucky that this particular medication was absorbed back into my system without further issue. A different medication could have caused permanent damage or much worse. Right then and there, I made a decision. That decision was to trust myself and not let my voice be quieted. This lesson has served me well. On future stays, I made arrangements for a trusted nurse to do any future IV placements. Additionally, I have established a great partnership with my healthcare team that listens to my concerns. I have also learned to advocate for myself with teachers and professors who sometimes lack an understanding of my needs, despite having a 504 plan or an ODA registration. Cystic fibrosis has provided me with defining moments by being my greatest teacher. It has taught me to advocate for myself, to take charge of my own healthcare, and to work through my anxieties. At the end of the day, I have to be able to rely on myself, so I speak up and advocate for myself. I am determined to make my voice heard.