Life in Japan with "Shisuchiku Faibloshisu"

by Isabel Yuriko Stenzel, age 23

Fall, 1995

I traveled to Japan so I could live life fully and take advantage of every opportunity that was offered to me. I wanted to show myself and people around me that my life was not controlled by CF but rather that I had choices. I have always wanted to live abroad ever since I was a child when I had occasion to travel frequently to my parents' homelands of Germany and Japan. As an adolescent, I realized that my health limited my travel dreams, so it wasn't until the end of my college days when my health care stabilized (with the help of Pulmozyme) that I felt confident enough to pursue my dreams.

After a friend recommended Stanford University's Volunteers-in-Asia program, I applied to see if I could qualify for a job teaching English in Japan. Even then, I doubted my ability to pull off living in a country where CF is a virtual unknown, and where the language and cultural barriers are difficult to cross. My twin sister Ana (who also has CF) was also interested in spending a year in Japan. She ultimately got a job teaching English privately. As each other's chest physiotherapists, it was imperative for us to travel together.

Ultimately, I couldn't have asked for a better group to teach-mostly physicians at Kagawa Medical School in Takamatsu, a relatively temperate region of southern Japan, on the island of Shikoku. I also had immediate access to medical facilities and advice. As my mother is Japanese, I also had relatives in Tokyo on whom I could rely in an emergency. I worked 30 hours per week, nicely suited to my own stamina. Even so, I often struggled to manage both my work and my CF lifestyle, consisting of five hours per day of therapy, mandatory meals, at least eight hours of sleep, and finally exercise which sadly took a low priority. As a recent college graduate, this was my first "real" job. I quickly learned that full-time employment would be impossible for me. Many days, I returned home exhausted and many weekends I simply slept all day despite the unexplored world outside my windows. I often felt frustrated that my body prevented me from taking advantage of my limited time in such a beautiful country. Still it felt good just to be there.

My early months in Japan were extremely difficult. I felt totally lost, yet remained thrilled at the adventure of my unfamiliar surroundings. The weather in late summer Japan was a CF nightmare: the air was permanently suffocating, and it was hot and extremely humid. I was often dizzy from loss of salt and became obsessive about drinking "Pocari Sweat," the Japanese version of Gatorade. Later, I found winter a challenge. Housing in Japan is built without insulation and temperatures outside can drop to below zero degrees Farenheit at night. I administered my own flu shot in November and took compulsive sanitary precautions, thus avoiding the flu as we eagerly awaited the spring.

My CF-related experiences in Japan were highly educational for both my doctors and me. Upon arrival, I contacted a doctor in Tokyo to whom we had been referred by the International Association of Cystic Fibrosis Adults (IACFA), Dr. Yamashiro, who had three CF patients. He invited Ana and me to a pediatric gastrointestinal conference in September where he planned a lecture on CF in Asia. We learned that there have been 104 cases of CF in Japan since 1952. We were informed that one out of 90,000 people in Japan carry the CF gene. At the time of our visit, there was a total of 12 CF patients in all of Japan, most of whom live in northern Japan. Ana and I, at 23 years of age, were the oldest CF patients in the country!

We were able to acquire National Health Insurance, and, because CF qualifies for the Rare Disease Fund, we were exempt from the 10% payment for medical expenses required under the standard system. I found a very enthusiastic pulmonologist, Dr. Jiro Fujita, in Takamatsu at Kagawa Hospital, who spoke English and was eager to learn about CF (pronounced in Japanese as "Shisuchiku Faibloshisu"). Dr. Fujita was especially interested in researching the similarities between CF and a relatively common disease in Japan know as DPB, Diffuse Pan Bronchiolitis, where previously healthy adults suddenly become chronically infected with Pseudomonas aeruginosa. He ordered a CT scan of our lungs, rarely performed in the U.S. because of the cost, and he collected, froze and stored Ana's and my sputum samples in their research lab, eager to have "precious bacteria from America." Dr. Fujita also prescribed a Japanese antibiotic called Klarithromycin, which he claimed was very effective against Pseudomonas aeruginosa. As an immunomodulator, it has the effect of changing the bacteria's resistance to antibiotics. I noted no major change, but did not feel any worse either.

My relationship with Dr. Fujita also yielded many enlightening conversations. He was the first doctor whom I had to inform about the prognosis of CF patients. He was very surprised at the median survival rate and exclaimed, "That is so young!" and asked me how I felt about early death. I went on a quick tirade about how I do not live by statistics, and that I live each day to the fullest without worrying about the future. I think he got my point. He also was unaware that the pancreas is also affected in CF. I never blamed him for his ignorance regarding CF since I am convinced that he'd never met before, nor will probably ever meet in the future, another CF patient in his career. It was a great pleasure having a doctor who was ready, willing and even eager to accept advice and respond to questions in a country where that practice is contrary to most Japanese physicians. In fact, by the following spring, Dr. Fujita requested that Ana and I give a presentation to his Respiratory Medicine class.

During the year we were away, Ana's and my health was a bit like a roller coaster, especially during the winter. Many times I felt great, with plenty of energy and confidence about being abroad. But other times, our poor health lingered over us like a black cloud, and alas, there were many days when we missed sightseeing in Japan. Some times we felt so rotten, we had to struggle even with our therapy. When our lungs felt "junkier" and tighter, we performed "therapy marathons," doing CPT an hour each, twice a day. We developed these intense therapy sessions because we could not fall back on IV antibiotics. There is no home IV system in Japan; in fact, it is illegal to prescribe any IM or IV antibiotics at all, even if they are used for inhalation. In order to receive IV antibiotics, one must be admitted to the hospital. After our doctor informed us about both a dreaded Methecillin-Resistant Staphylococcus aureus (MRSA) and Pseudomonas outbreak in immunosuppressed patients two years ago at Kagawa Hospital, Ana and I were determined to stay out of the hospital in Japan. With little physician knowledge of CF, our limited language ability and no private rooms to limit cross infection, the hospital represented another CF nightmare. Despite our helpful doctor, Ana and I were truly on our own in terms of health care. Nearly all of the medication we self-administered was either brought with us or mailed from America. Just before our departure, we shipped almost three boxes of medication. Amazingly, the medication we brought lasted only three months. Acquiring DNase (Pulmozyme) was another challenge. Due to refrigeration requirements, my parents shipped it Express mail. It usually arrived four days later, warm but reasonably effective. I had several visitors who also became benevolent DNase couriers. During these health dilemmas, my friends and parents urged Ana and I to come home for a two-week tune-up. Perhaps we were stubborn, foolish or crazy, but we just wanted to stay and "make it," enjoying Japan and our jobs. We lived out the Japanese expression "Gambate," which means "endure and do your best."Outside of the medical world, I had many adventures meeting new people. The most difficult part in socializing in Japan is that nearly 90 percent of the men smoke. I reverted to an adolescent habit of stating that I had asthma or else I simply went out with my women friends. The issue of disclosure of my CF was complex. Typically, in Japan, topics like illness can be stigmatizing or burdening so they usually are not shared with others. However, I often braved being a "cultural ambassador" and behaved freely as an American, saying and doing what felt natural to me. Reactions from people varied, just as they do in the U.S. For some, there was basically no reaction, others were shocked and typically exclaimed, "But you look so well!" One man asked to read my palm and he said my lifeline was actually quite long (classic Asia for you)!

By far, the greatest times in Japan were my traveling adventures. Although it was quite a challenge to lug around all my medical stuff everywhere, it was worth it. During my stay I went to Tokyo twice to visit relatives and tourist spots, to Himeji to see Japan's oldest and largest castle, to Hiroshima to see the Atomic Bomb Peace Park, to Atami to visit Japan's famous natural hot springs, and even to Kobe ten days before the city was devastated by the earthquake! It was equally enthralling to explore local sites, the true "Inaka" or rural Japan. Pre-war sod and bamboo homes were standing next to modern Pachinko Parlors (casinos) with flashing neon lights and loud music. I observed old, wrinkled, bowlegged grandmothers riding motorcycles and old men in traditional kimonos talking in the street on cellular phones. I walked through narrow, deserted streets at midnight feeling completely safe. Once a hunchback, wrinkled old man approached me as I sat under a blooming plum tree in a park and said, "Nijuisseiki ni gambatene" or "Do your best in the 21st century!" I hiked on hillsides strewn with bright red Japanese maple leaves and cruised the Inland Sea. I stood next to a wild Japanese monkey and roamed abandoned temple grounds and ancient graveyards. While walking the bustling shopping streets of downtown Takamatsu I heard loudspeakers of a right-wing group proclaim that the Emperor is still politically powerful. Other times I met people who idolized and respected Americans and treated me like a queen. In short, I have experienced the part of Japan that I had hoped to: that which a book or class could never teach me.

Despite all this, I often felt homesick for people and a culture I could truly relate to. I missed familiar foods (especially burritos) and longed for relationships without language barriers, friends that I could hug and kiss without inhibition, and, of course, a hospital familiar with CF that could provide a good tune-up. I feel satisfied with my Japan trip. The experience was incredible and I highly recommend travel to my peers with CF. Make the necessary arrangements and GO FOR IT! CF does not have to control your dreams of seeing the world.

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