Posted in: Ana & Isa's Blog | By Isa

Dear Friends-

In 72 hours, I’ll be mid-flight, somewhere across the Pacific with Ana, Andrew, a film crew of 5, and our dear friend Robin, heading to JAPAN!

I can’t wait! Last week, gratefully, both Ana and I received a clean bill of health from our transplant clinic, as well as many well wishes from patients and staff alike. We requested/demanded prophylactic medication to prevent complications; we pick up our last stash of meds tomorrow, and then… time to sit on, slam, squeeze our suitcases closed on Wednesday night. 

We’ve got the Miralax. We’ve got the TOBI. We’ve even got the Ambien. I think we’re finally ready.

Can’t forget my glasses. And sunglasses. Oh no, they don’t wear those in Japan. I’ve got my epicanthic folds.

Well, our speeches are “as good as they can get.” We’re receiving emails about the final details of many speeches, in which case we have usually overprepared, and will have to cut a ten minute speech down to 3-5 minutes. Oh well. It’s the thought that counts. We Americans talk too much anyway. Ana and I had our last Japanese lesson today, and our teacher said, “You’re ALMOST ready.” Haha! Japanese don’t compliment…:) But I think we’ve come a long way.

Today I prepared a last minute powerpoint slideshow of an array of photos of the American CF community for the Japanese CF community event we are speaking at on October 8. I think I got most of your permissions! Unexpectedly, as I was searching through files and files of photos, I found myself tearful in front of my laptop, holding my head in my hands. I have so many photos of smiling, beautiful families- parents, siblings, CF children, teens and adults, who are all living their best lives. Everyone in the CF world just shines! Seemingly so content, somehow, which means we make the most of the life we’re dealt with. The highs are higher and the lows are lower. We are all so FULLY alive, despite being stricken with this sucky disease.  

Why am I so lucky to know so many wonderful people? These people I’m putting in my slideshow are neighbors, regulars in my life whom I see at CFRI events, but there are also those I know from USACFA, or from our book tours across the country. Even if we’ve just met once, or a few times, I feel a special connection and love. I was so inspired that I’m giving this talk to strangers in Japan who are just like all of us.  All we all want is to just live.

Except, here in America, I have dozens of photos of adult CF peers- some 40, 50, 65- you know who you are! I have pictures of CF friends running, swimming, surfing, scuba diving! I have many photos of CF friends on their wedding days. And many more of CF friends who are parents themselves.  Lastly, and most importantly, I have dozens of photos of dear friends who are just like me: active (hyperactive), healthy, vibrant, thriving with a lung transplant!!

This CF adulthood experience is a luxury compared to the CF condition in most other non-Western European countries. We are so blessed. Yes, our country has problems with its health care situation. But we are so blessed.

I don’t know why I’m one of the few who has grown to adulthood. Last week, I went to Las Vegas for one day to give a talk for the Vascular Access Conference. I flew over the gravesite of Karen, my childhood CF camp best friend. I still remember where it was. If I’d had time, I would’ve gone to her gravesite.  She has been gone nearly 20 years.

So, as I prepared this slideshow, I was overcome with a power- a spirit that wasn’t my own, but one that belonged to a whole generation of people with CF, past, present and future.

 And in 10 days, we’ll meet a whole new world of a small, desperate CF community in Japan that will add to the spirit I felt today.

I think the exact same feeling can be said of the transplant community as well.

Anyway, our team in Japan said the book was released last Friday. Let’s cross our fingers to see what kind of response we get. The “Dream Team” consists of Ms Oyama from Iwanami Publishers, Ohkubo-san from Japan Transplant Recipient Organization, Naomi, our Japanese American friend, Kimura-san, a friend and US volunteer at the Transplant Games, also, Taka-san, a friend and US volunteer at the Transplant Games, Aihara-san, a supporter of transplant in Japan, Mari-san, a journalist and friend, Ueda-san, a journalist and also transplant family friend, and so many others I cannot fully list here. They have all organized an amazing schedule for us, and now the precise details are becoming known. I swear Japanese are the most generous people on the planet. Coordinating schedules, book sales, speeches, translators, meals, who does what, bagpiping, interviewing, powerpoints, arrival times, film crew set-up, film crew transportation, hotel, train schedules,etc etc etc is absolutely bewildering. Japanese culture is all about reciprocity. In the case of the Dream Team’s efforts, there is nothing I can ever give in return that would pay back what these people have kindly given to us.

I’m also deeply grateful for the American side. Today I talked to Professor of Anthropology at McGill, Dr Margaret Lock, who wrote ”Twice Dead: Organ Donation and the Reinvention of Death (2002)”. This is a fabulous academic book that nicely summarizes the history of organ donation controversy in the West and in Japan. It was exactly the resource I needed for my trip. I’m amazed I can just look somone of her prominence up, email her, set up a call, and talk at length about her experience and advice as I venture to Japan to be a Japanese organ donation spokesperson. Same with Dr. Frank Delmonico, Reg Green, Dr Bill Hurlbut, and so many other prominent people in the transplant world who’ve given up their time to advice little ol’ me.

I also watched “Departures”- a 2008 Japanese foreign film (winner of the Oscar this year) about a mortician, and it nicely conveys Japanese stigma towards handling a deceased body. It is a great intro into our discussions on organ donation. I recommend it to everyone- it’s hilarious, touching, has great scenery and music (the cello, sigh…).

Okay, I think my brain is filled with ideas and words, and it’s time to stop learning and just EXPERIENCE.

Well, like my speeches, I’ve gone on and on in this post.  I’ll end for now. Time to get to bed in a timely manner.

Be well, my friends. Thank you all for your kind words of support and well wishes. Wish you were coming with me! Well you just might be! Chances are, you’re in my powerpoint!

Hugs Isa