Isa’s report on Japan #1: 5-18-10(belated)

Dear Friends:

Thanks for reading this blog! I’m in the airplane, flying back from Japan as I write. For 8 hours I’ve been unable to do anything. I can merely sit here, reflect, and feel my body and mind’s exhaustion after an 8 day whirlwind tour of Japan.

Another visit to Japan has been completed. Ana and I are more comfortable in Japanese and have created a network of friends all over Japan. We have eaten way too much, wandered train stations til our feet burned, and piled tons of boxes of gifts into our suitcases. What a journey. Throughout the week, we were in disbelief that we are alive and well enough to be ambassadors to Japan for CF and organ donation awareness.  My mother says her dreams have come true; that she’s so proud of us.  It seems like this mission is hardly over; that it has become a new purpose for us that we never expected. According to our hosts, they need us to help them promote CF and organ donation. That’s perhaps why we’re still here.

Ana reported on the non-stop activities of Takamatsu. Well, now I’ll report on our final two days in Japan- our trip to Sendai.

On May 18 we woke way too early lying three in a row on the traditional tatami floor. We go to bed late and wake up early every day; this day started the day by going to the Onsen- a Japanese bath that was located in the hotel. We normally don’t go into hot tubs, but this was a cultural experience we couldn’t pass up. Mother and daughters soaked in overly hot water. There were giggles and words of gratitude shared that we are all together and can partake in such an extraordinary life. We then went to breakfast and enjoyed an amazing spread of udon, natto, rice, miso soup, vegetables, fish, seaweed dishes, and kiwi fruit. Ana and I were extremely verbose with pleasure. It was awesome and we embarrassed ourselves with our appetites.

The day started with Dr Kiyomoto picking us up to take us to the JR Train Station, just 5 minutes away. We could’ve easily taken the taxi but Dr K insisted on driving all the way from the medical school (30 minutes) to bringing us to the station in the University car. That’s Japanese hospitality! Such devotion and service. At the station, we were greeted by 4 of our former English students, Ms Morita, Sato, and Koseki, and Saeko-san. There were loud words ofappreciation and gratitude before we rushed to catch the 9:55am train to Okayama. This “Marine Liner” was famous for the scenic ride across Seto Inland Sea’s Bridge, Seto Hashi, which is the sister bridge to the Golden Gate Bridge! We enjoyed a 45 minute ride to Okayama, a city on the main island of Honshu and where my grandmother’s maternal family came from. We rushed out of the train with our big heavy bags and rushed, rushed, rushed, through a sea of people to find the Shinkansen line to Osaka. We barely made it , because we’re like rats lost in a maze.

Another 50 minute ride on the Bullet Train brought us to Osaka. We stored some of our stuff and shopped and ate a yummy sushi lunch casually for an hour. There were so many nice things to buy but I refrained… Then we boarded the bus to the Osaka Airport. Another 40 minutes later we arrived way too early at the Osaka Itami Airport. We sat around for 2 hours and just relaxed, eating our favorite manju and random vitamin drinks from the vending machine.

The flight arrived in Sendai around 5:30pm and we took the Sendai train, connected to the airport, directly to downtown Sendai. Gosh, I wish the USA airport and train system was this efficient! Everything is so smooth, so cheap, and so clean. At the Sendai Metropolitan Hotel, located right at the Train Station, Ana , Mom and I were greeted wonderfully by CF moms Rumiko Aoyama and Mayumi Adachi. Rumiko brought her daughter Reiko with her, a gorgeous tall 27 year old woman who lost her sister to CF.  After freshening up, we met this ladies for a nice dinner at a local restaurant, enjoying random bites like fried onion, fried chicken, more fried chicken balls…. We were eating like CFers! We talked and talked late into the night, about everything and anything. Mayumi had questions about her son’s CF care, and shared with us his struggles. In Japan, because he has CF and needs a private room, this family must pay $300 per NIGHT in the hospital. The family has to pay hundreds of dollars a month for medication, so despite the father being a university professor, they live in an apartment to make ends meet. Akihiro has a pre-existing condition, so he doesn’t qualify for supplemental insurance that is offered to the general public to defray these costs. He goes to a pulmonary doctor, so when he is admitted for a “tune-up” he must be admitted to the “Respiratory Floor” where there are only 4 beds to a room. Can you imagine the germs around there?!? And soon he’ll be going to Kyoto with his family for a transplant evaluation. Apparently, JUST FOR THE EVALUATION, he’s required to be admitted for 3 weeks!  His parents are considering living lobe donation, since the chance of getting a lung from a cadaver is extremely low. But because Akihiro is 22 and nearly the height of his parents, if each parent gives a lobe his lung capacity can be at best around 44%. So the parents are struggling with what to do.  It is such a desperate situation, and I feel for his family. Our lives were hard enough with CF—the worry, the therapy, the feeling miserable—yet our struggle PALES in comparison to the Adachi family’s.  I can’t imagine … needing and wanting a transplant, staying hopeful in the face of nearly no organ donors, having my parents make such a difficult decision. And meanwhile, Rumiko remains posed, supportive and loving, despite the death of her daughter 6 years ago, without any transplant.

I need to crash out right now and I’ll write more later. These posts are probably too long anyway! I’ll post about the big day at the CF Charity Concert in Sendai tomorrow. Thanks for your interest and I hope you have had a great week.

Hugs and love,


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