חיים ללא דאגה

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Abhijit Tirumala, an adult with CF.

Even though I can’t remember much from when I was a kid, some of my earliest memories involve doing airway clearance treatments to help loosen the thick, sticky mucus that built up in my lungs. 

By elementary school, I had gotten so used to living with CF that I didn’t know what life without CF was like. Still, I felt the impact of my disease. At lunchtime, I had to go to the nurse’s office to take pancreatic enzymes, a medication to help me digest food due to pancreatic insufficiency, while my friends quickly ate and then ran to play basketball. I remember all the uncomfortable conversations when curious classmates watched me down seven huge pills. On top of that, I was always missing school or leaving early to take my antibiotics or go to a CF doctor’s appointment with my parents.

The hardships of living with CF hit me most in high school when I was hospitalized twice. One stay was nine days; the second was an agonizing two weeks. The worst part about these hospital stays was not the treatments or countless medications. It was the feeling of waking up in a hospital room and being hit with the realization that I had no idea when I would be going home. 

The challenges of living with CF have only increased during my time in college. In the first quarter of college, I was hospitalized twice. One of those times was for an entire month. Being stuck in a hospital room is one thing which always causes my anxiety to spike. Even when I was discharged, I found it hard to smoothly integrate back into society, which is something nobody really warned me about. 

Another big challenge I face with CF is the treatment burden. Currently, I do multiple airway clearance treatments that include inhaled medications and a vest machine. These treatments take around 45 minutes and I do them twice a day. Often, after treatments, I bring up so much phlegm by coughing that I must lay down and rest, which takes additional time away from my schoolwork, hobbies, and spending time with my friends. It’s hard to stay on top of my treatments along with school and other responsibilities. 

But perhaps the most frustrating part of CF for me is that even when following my entire treatment schedule perfectly, my lung function still declines and I can’t live the life I want.

Last year a professor told me that it may be better for me to not pursue medical school because of my CF, since it may be too demanding to keep up. Even though he was coming from a good place, that was the first time when I really realized that CF has limited me in so many ways.

Many of my peers don’t have to worry about the limitations of their health. I feel that CF has stopped me from exploring the world and taking on new opportunities. My friends can live wherever they want. They can have the careers they dream of. They don’t have to worry about falling sick or being hospitalized. 

Just like my friends, I have a lot of goals. I’m interested in biomedical science and I hope to work in the healthcare field. But unlike them, I have never really known a life without worry. 

For me, a future with a treatment for CF means a future where I can be fully present and curious instead of cautious. For me, a future with a treatment for CF means a future without worry.

תודה מיוחדת ל-Vertex Pharmaceuticals, Inc. על החסות שלהם ברמה 1 לקמפיין חודש המודעות שלנו ל-CF.