5-18-10 I am sitting on the Shinkansen , or bullet train, on May 18 enjoying the beautiful scenery of Japan. We are passing rice fields, bamboo forests and traditional homes sprinkled between narrow roads, man-made canals, and dense forested mountains. Between traditional views are modern buildings, industrial centers and a milieu of railways and roads. We are passing at speeds over 100 mph which makes photography difficult, so I am left to reflect by writing instead.
We are enroute from Takamatsu to Osaka, after spending the most splendid two days in the city where we lived 15 years ago. Never in my wildest dreams did I think I would be back there. After almost five days straight of 4-6 hours of sleep per night due to jetlag, I am delirious but infused with adrenaline with my eyes wildly open to the realization that I am back to a place that I once called home. We were greeted by Dr. Kiyomoto and Dr. Tokuda at the Takamatsu airport on May 16, 2010. In March, they had come as chaperones with a group of Japanese medical student s to Stanford and we lectured to them about organ donation as part of our volunteer work with California Transplant Donor Network. These two physicians are organ donation supporters so we informed them we were coming to Japan in May and they invited us to speak at Kagawa Medical School , the same med school where Isa taught English back in 1995. These two gentlemen arranged the most generous welcome for us, including flowers, gifts, two nights stay in a traditional Japanese inn where we slept on futons on a tatami floor and enjoyed an “onsen,” or hot springs. The hotel had the most scrumptious Japanese breakfast of the region’s specialty of udon, as well as other goods like natto, fish, rice, and various roots, seaweeds, and radishes. Dr.Kiyomoto is a nephrologist, who studied in San Antonio and spoke wonderful English. I have never met a physician as personable, caring, humorous, supportive and open minded as him. Unlike most Japanese men, he was verbose and outgoing, a non-smoker, highly familiar with American lifestyle, and didn’t hesitate in sharing his opinion, humor and compassion with a huge smile. When we commented to him how wonderful he was, he smiled and shouted ” I am a samurai!!!” and made us laugh aloud.
Upon our arrival we headed straight to a press conference where we did an impromptu TV and newspaper interview about organ donation and our goals, efforts and experiences. I couldn’t believe that I was speaking Japanese again with relatively little pain.
The next morning, the day began with a lecture in the morning to Kagawa University undergraduates. As is typical, due to severe sleep deprivation, several students fell asleep immediately, but the majority were wide eyed and interested, since organ donation and the patient’s experience are very rare topics to cover.
After the lecture we had two hours free and Dr. Kiyomoto took us sightseeing to Mt. Yashima, one of the most famous battlefield sites of ancient Japan. At the top of a mountain, we could overlook the Seto Inland sea, which is speckled with dozens of islands that stick out of the sea like triangles covered in dense pine and bamboo forests. One of the islands is famous for caves; the other is famous for an overpoplulation of monkeys. We could see far and wide during the beautiful clear spring day. As we walked Dr. Kiyomoto shared his family background, that his grandfather was a imprisoned for war crimes and as a result became Catholic and donated his body for research after his death. He also told about his relative who received a cadaveric kidney transplant after waiting many, many years. At the end of a short walk, we headed to a 200 year old traditional restaurant for more famous Sanuki udon; we were served the freshest homemade udon I had ever tasted. I decided on the large size which was over a ½ pound of noodles and I downed the carbohydrate overload over conversation with Dr. Kiyomoto abou the buying and selling of organs in China and the Philipines. The stories we heard were so disturbing. For large sums of money, some people from Japan who are desperate for kidney transplants are going abroad to receive them. Dr. Kiyomoto accompanied one of his kidney patients to China to oversee medical matters. The Chinese hospital requested that the patient arrive on a specific date for their scheduled surgery date for the cadaveric donor. When the doctor inquired how the cadaveric transplant could be a scheduled event, he was told that was the date of the prisoner’s execution. After the successful transplant, Dr. Kiyomoto asked what the prisoner was executed for … and it was for selling porn! The prisoners don’t have any informed consent for donation. This is, to me, wrong and an abuse that is painful to hear about. We also heard stories about falsified medical records about a potential donor’s HIV or hepatitis records. Yet, because there is a demand, this continues. This demand will continue since organs are not available in Japan. It creates ethical dilemmas on so many levels, it is beyond the scope of my blog.
After lunch, we headed back to town for a meeting with the state of Kagawa’s Ministry of Health government officials. Dr. Kiyomoto arranged all these meetings in his passionate attempt to increase awareness about donation at a government level. In disbelief, I found myself sitting at a table with six older Japanese men, all dressed in dark suits , sipping tea (served by the female secretary of course) discussing what can be done to increase donation in the state of Kagawa. Apparently organ donation is regional so that a donor in one region can only donate to people waiting in that region. Kagawa has had only 4 donors (mostly cardiac death donors) in a year, and there is only one transplant coordinator in the entire state. She is on call 24 hours a day every single day of the year. Although my ability to communicate was a bit limited, the purpose of our meeting was really to present ourselves to the government officials as seemingly healthy, functional, happy recipients who are able to travel and thrive. In a way, our presence was supposed to inspire him to be supportive of donation. Each meeting is very formal and typically goes like this: We arrive at a scheduled time (any tardiness is frowned upon), we bow a million times to each other, while profusely thanking and apologizing, then each person takes out a business card, and a formal exchange of cards occurs (not that I can read them) while bowing , and then we sit down for tea. We speak formally and do a lot of smiling and nodding and communicating in our very verbose American style (in broken Japanese) of our sharing our opinions and experiences. Everyone in the room seemed to agree that Japan is behind the rest of the world in donation and that the issues of donor/recipient shame, brain death , lack of support by physicians, and a poor transplant infrastructure are the main barriers. They seemed to agree that some change is needed. Whether or not this conversation translates to actual action is a different story. I just hope and pray that their interest and support of transplant is sincere. At some point, the conversation carried on in Japanese by my mother and the officials seemed to turn to a tone of “our culture (America) is better than your culture” and that made me uncomfortable. I explained that we are not here to criticize Japan; rather, we are here to find the best of both cultures and melt those aspects into an organ donation system that is culturally sensitive and works for them to increase the availability of organs.
At the end of our session, we said our goodbyes and I presented the Star of Life lapel pin to each of these officials. This silver pin is handmade by Marcie, a pancreas-kidney recipient from team Northern California. The pin is typically a tribute to donor families but really, in my mind, represents the cycle of life of transplantation in general. It is wonderful that this beautiful art piece, which is given to every donor family in Northern California at the annual CTDN donor family recognition ceremony each April, has now found a presence in Japan.
After the meeting with the government officials, we headed back to the hotel for a short break. Fifteen years ago, I taught English to a young woman named Saeko (often mispronounced “psycho”). We kept in touch and arranged to meet for a brief time. While engaging in nostalgic conversation, we walked the streets of Takamatsu and found our way back to the apartment where we once lived. We enjoyed reminiscing about the coin laundry facility and the public bath house nearby, and the train station and shopping arcade. So many shops changed and the old post-war train station was completely renovated into what is now typical for Japan- a 10 story department store build above train tracks. Everywhere we looked there were shops and restaurants. I couldn’t help but wonder at what point does the need for material goods reach capacity? How do the Japanese store all this stuff in their tiny houses, their tiny cars, their tiny closets? How do all these stores stay in business? At one department store, I saw a diamond necklace for $20,000, a hairbrush for $50, women’s shoes for $200 and a roomba for $800. Unbelievable!
After too short of a time, we headed back to the hotel where we said our goodbyes to Saeko and returned to our hotel room to prepare our lecture. Shortly thereafter, we were picked up by Dr. Kiyomoto and driven to Kagawa Medical school. We were escorted to the president’s office, where we met the Dean of Kagawa medical School, as well as two medical doctors- a pulmonologist and a gastroenterologist. Both had keen interest in lung and pancreas transplantation, respectively, and we sat around a table sipping tea, speaking about organ donation and CF. Apparently, the pulmonologist is trying to establish a lung transplant program in Kagawa. He said that no American hospital would accept lung transplant candidates from Japan, which I found hard to believe . He said there are about 100 lung transplant recipients in all of Japan, and that their 5 year survival rates are90%, which is almost double what the USA’s rate is. I wondered why. Could it be the diet? Exercise? A very strict and sheltered post transplant life? Again, the atmosphere of our meeting was formal and I struggled to understand his Japanese. When I turned to my mother for translation assistance, she flustered some, so the Dean and Dr. Kiyomoto chimed in; apparently, they spoke English, as most physicians do, but our fluency tricked them into thinking we could understand everything they were saying.
After this meeting, we headed to the lecture hall for the 6pm lecture. Immediately upon entering the building, we were greeted by dozens of students, staff members (including several whom we had taught English to in the past) and even the press. I felt like I stepped into some sort of twilight zone, in a surreal blur of attention and celebrity status, of the need to impress, share and communicate while taking everything I could to conversate in Japanese. Books were sold and we were asked to sign them, while the press wanted to interview us, while our friends wanted to pin a handmade corsage on my shirt- all at the same moment. It was moments like these that I thank God I am a twin, so that there are two of us to share the demands.
We gave a lecture to an audience of approximately 100 medical students, staff and former friends from Kagawa University Medical School, as well as two other remote audiences from other state medical schools who viewed our lecture via webcast. In the audience was Mrs. Watanabe, who was the host sponsor for Isa’s job in 1995 for the Volunteers in Asia Stanford program. Mrs. Watanabe was a progressive professional woman back then, and we were impressed to see that she is now running for governor of the State of Kagawa. She attended our lecture to learn about organ donation, since it is such a hot topic politically.
I think our talk went well , but as usual we ran out of time and in our efforts to rush, we stumbled in our Japanese a bit more than I would have liked. I hope the students could understand our foreign accent.
Following our lecture, we headed toward the cafeteria, where the school hosted a party for us. On a large table in the center of the cafeteria were dozens of trays of catered food- delicate tiny sandwiches (white bread with the crust cut off- very Japanese), sushi, vegetables, karage (fried chicken), fried shrimp, and much more. Beverages included iced tea and juice. Amazingly, Japanese don’t drink much soda, which I think is so healthy compared to the USA. Interested guests poured in, and soon the table was surrounded by students and a few staff members. A toast was given by Dr. Tokuda, with incredibly kind and sincere words expressing their gratitude for having us come to speak for them, and well wishes for our health and my upcoming wedding. I have never felt so honored and welcomed by such kindness. As we toasted, I felt a warmth and connection between multiple generations and a kindred spirit among these healthcare providers and aspiring medical doctors – they truly cared and were genuinely interested in organ donation, patient care, and our story.
While the Q&A session of our lecture yielded very few students brave enough to ask questions publicly, immediately after the toast, about ten students surrounded me with multiple questions. In soft spoken and broken English , they struggled with questions like, “My father has a chronic illness. How do I help him?” or “ What did your parents think about your organ donors?” or “Do you want to have children?,” just to name a few. Some struggled so much with English that I honestly couldn’t make out what exactly they were asking. I caught a glimpse of Isa at the other end of the table, only to see her engulfed in a sea of students also. The students were young, so sincere in their desire to learn from us, and seemed to cherish this rare opportunity to speak to Americans, patients and especially, lung transplant recipients. I truly valued the experience of teaching this next generation of medical doctors. One young woman who was about twenty (Medical school in Japan is six years long and starts right after high school) told me about her aspiration to open up a school within a hospital for chronically ill children who are hospitalized frequently. Apparently, there is no system for providing education to chronically ill children in the schools or in the hospitals. Those children just fall into the cracks and their mothers are left to educate them. To me, it starts a cycle of underachievement and master status of disability for chronically ill children that prevents integration into normal societal roles.
Two hours later, with nothing to eat or drink and my feet burning from standing so long, Dr. Tokuda called for everyone’s attention for a group photo and to close the evening. I quickly took this as an opportunity to swallow several bites of food. Dr. Kiyomoto saw that we hadn’t eaten, and he began packing us leftovers in plastic boxes so we could eat back at our hotel.
After a very long day, we headed back to the hotel around 9:30pm. We were utterly exhausted. The temptation to try the Japanese hot springs within the hotel was ignored as we were too tired to do more than change, flush our sinuses (to rinse out the germs from the crowd) and take our meds. We had survived a jetlagged day of five hours of sleep, then two lectures, two meetings with government and hospital officials and four hours of sightseeing. It was the busiest day of my life. My body lay on the futon that evening feeling like every bone was sinking into the mattress, the kind of exhaustion one feels where one groans involuntarily and within a few minutes my mind, too tired to process the day, drifted off into another six hour night of sleep.
Thank you for reading this very long blog post.