Studying Abroad with Cystic Fibrosis
This June, I had the opportunity to spend time studying Engineering in Global Health in Barcelona, Spain. The program covered a different topic each week, ranging from immunization, diagnostics, pandemics and epidemics, etc. I enjoyed learning about the issues that are being seen globally, and the innovation and creativity used to handle them. It gave me a lot of hope for people living with health conditions around the world.
The preparation for this trip was extensive. It involved a few meetings with my university’s staff members to ensure that I got a single room, so I could do my treatments freely without bothering a roommate. But the main hoop I had to jump through was getting enough medicine to last the Summer. Though my time abroad was just a month, I wouldn’t be back in Texas until August, so I had to get three months’ worth of medicine. Typically, a simple vacation override will be approved easily by insurance, but the more specialized medications required extra effort. After a slew of calls with my care team, insurance company and pharmacy, I was able to get what I needed of all of my medicines for the trip. For my modulator, because it is highly specialized, I had to order a month supply once I got to Boston. In the future, I will allow at least six months to start communicating with insurance and providers to allow a relatively easy process to receive the medicine I need.
Traveling through the airport with my medicines has become a lot easier than it used to be. Now, with a portable vest, it doesn’t alert the x-ray machines at security, like my old one did. The only questionable item is the ice to keep certain medications cold. I always kindly explain what is in my carry-on and ask if the TSA worker could put on a fresh pair of gloves to keep my medicine clear of contamination. In the U.S., they always oblige, but in other countries it isn’t as well received, especially with a language barrier. What has become a bigger issue in the past couple years however, is the gate bag-check. Often times, if the flight is full, gate agents ask for me to check my bag, especially in Europe. Traveling through Europe on the weekends, this happened frequently, and each time I had to make my case. I have relied on my doctor’s letter in these situations, but unfortunately, they don’t provide as much authority in Europe. My carry-on suitcase was jam-packed with tens of thousands of dollars of equipment and medicine, so there’s no way I was going to risk the possibility of losing the suitcase. After a lot of explaining, sometimes in a different language, they allowed it, and sometimes resort to using the flight attendant’s extra space. It has become one of the most stressful parts of flying. But I found recently that if I talk to the people manning the gate before boarding, the process is easier and they sometimes allow me to board first!
When I finally arrived in Barcelona, I had a single room in an apartment with four other girls. We were in the center of the bustling city, and we were all excited for the month to come. We had a full day of class Monday through Wednesday and a half day on Thursday. Friday through Sunday we were free! Fitting treatments in my schedule worked well in the morning, but it was more difficult at the end of the day, when everyone was using the bathroom and getting ready for bed. I usually started getting ready before everyone, so I sometimes had to cut social activities short to do my treatment and go to bed at a reasonable time. Often times, because I was on the same schedule as all of my roommates, I would get an hour or so less sleep, because I had to get up early and stay up later to complete my treatments. So, after a full day of classes, and an average of walking 8 miles a day, I needed to rest. This was a time when my friends wanted to take care of errands or go out, and I simply didn’t have the energy. Sometimes, I felt guilty, because I didn’t want to come across as antisocial; I needed time alone to nap and recharge. Being far from all of my support system was a mental challenge that tested me. I started to get anxious in high sensory environments and think of worst-case scenarios that spiraled outside of health concerns. Luckily, I had a new friend who I was able to confide in and be transparent with, which helped me a lot. I knew I wanted to push myself out of my comfort zone this Summer, and I was doing exactly that.
While abroad, I realized that my digestive enzymes were getting low, though I specifically remember packing at least five bottles worth. I figured I had lost a bottle worth of pills when I was eating out. After scheduling a doctor’s visit using the international insurance I had abroad, it led to me finding “digestive enzymes” as an over-the-counter medicine at the pharmacy. I wasn’t convinced this was the best option, but I bought a bottle and called my dietitian later to confirm the medication. We found that ten pills would provide the lipase strength of one of my usual capsules, meaning I’d have to take 30 with a meal, which was obviously not sustainable. My care team in the U.S. and I brainstormed other options, but with the foreign healthcare system and with the regulation of shipped prescription medication, we were unsure which path to take. With a stroke of luck, I remembered my cousin, who lives close to my parents’ house, would be traveling to Spain before I ran out. My care-team immediately worked on getting proper documentation for my cousin to carry my prescription, and my dad got my medicine to him the night before he flew to Madrid. I took a three hour train ride from Barcelona to Madrid on a Sunday morning, got my medicine, spent the day with my cousin and his wonderful host family, and rode three hours on the train back to Barcelona that night. Thankfully, it all worked out, and I was elated to get to spend time with family while abroad!
The month I spent abroad was a huge learning experience for me, and every single day was a new adventure. Some days were easier than others, but remembering to be present and take advantage of my time there kept me positive. Immersing myself in the culture, friends, and sights was an experience that I will always cherish. Having cystic fibrosis has not limited or infringed on my passion to see the world. In fact, I think it creates a deeper appreciation for the experience, and pushes me to try new things.