As we prepare for the next adventure, I forgot that I still had a blog post to share from the last one- the Washington DC trip. So here it goes, last but not least. Thanks for your interest.
7/17/10 Day 4 in Wash DC
After a short night, I awoke on Saturday morning around 8:11 am. I walked with Andrew and Isa to a local breakfast joint and enjoyed a real breakfast for a change , rather than the usual grab and go. The film crew picked us up around 10 AM and we headed towards Richmond, Virginia, which was 2 hours away. We were scheduled at 1pm for a visit and interview with staff members of UNOS, the United Network of Organ Sharing. UNOS is the main government appointed agency in the USA that coordinates the organ transplant waiting list, creates ethical distribution policies and spearheads public education. UNOS is also the site of the National Donor Memorial, which is a small garden next to the UNOS building. It would be our first time visiting UNOS, the place that saved our lives and the lives of everyone else who has ever received a transplant in the USA. In the van, the group chatted and joked happily, making me feel like it is impossible to ever be in a bad mood amongst these friends. Just outside of Washington DC, we hit a horrible traffic jam on Interstate 95 and we spent the next hour or so crawling at less than 10 miles per hour. Doni and her sister, Liz, were heading to UNOS from their home in Maryland and were going to meet us as well. After miles of horrible traffic, it suddenly ceased for no apparent reason (not even construction or an accident!) and we were on our way.
As we got off the freeway , I saw the building in front of me with a giant sign on it in blue and green that read “UNOS United Network of Organ Sharing” and I was swept with the desire to bow to my knees. UNOS is where it all starts for every listed transplant candidate and the actions that occur within the building are a matter of life and death to so many. It was extremely humbling. We met Anne Pashke, public affairs director for UNOS, who took time on a Saturday to show us around. Lolly, another lung transplant recipient who was 11 years post transplant, came to join us. Her husband had passed away and became a cornea donor so she attended coming from a unique perspective as a donor family member and recipient. Her mannerisms, facial expressions and style of speaking were almost identical to my dear friend Nahara, so I instantly felt connected to her. Though she faced a lot of complications due to side effects of medications, and had difficulty walking, she was eager to participate and persevere in the tour of UNOS to the best of her ability. Doni , her sister and George (the 35 year kidney recipient whom we had met at the happy hour) were also there. Together, the five of us chatted liked united brothers and sisters. All over the lobby of the large building were photos, memorabilia, brochures and wall art that celebrated the gift of life. We were also met by Freda, a social worker who works for UNOS for patient affairs. Because Isa is on the Patient Affairs Committee for UNOS, she had met Freda, who exudes angelic love and kindness. All of us stepped outside in the heat, which in my best estimate was in the mid-90’s , to have a tour of the beautiful National Donor Memorial garden. This artfully created garden was full of symbolism- a dripping water wall that read “wife, husband, brother, sister, friend, son, daughter” to symbolize the tears of sorrow from the donor family and the tears of joy from the recipient. Inside, the enclosed memorial, there was a wall of names of donors next to a beautiful heart shaped fountain. Instantly Doni and I were drawn to the name, James, on the wall. We embraced and went up to it to touch it and give thanks together. I felt like I had gained another sister. No words needed to be spoken; we knew that there was a reason we crossed paths, and that a man named James from Oregon saved both of our lives.
On the wall I counted about 8 names of Japanese people who had donated their lives, and I secretly hoped that someday such a memorial tribute will be erected in Japan to honor all deceased donors there. On the second story was a beautiful lawn, surrounded by a flowering plant called the “Butterfly plant” to symbolize renewal and life. At the end of the lawn was an interesting sculpture of about 100 6 foot long thin poles erected close to each other. When the wind blew, the poles would touch each other and a chime would sound. The sculpture was a monument erected in 2008 in honor of the University of Michigan lung transplant team that died in a plane crash in June 2007 while flying in bad weather to retrieve a donor’s lungs. I was so moved. Heathy, compassionate, caring health care providers whose own lives were taken in the attempt to save the lives of another. How unfair, how unlucky and how incredibly poignant. I thought about the wonderful rapport and relationships I have with my own transplant team and the mere thought of losing any of them as they tried to save me would be utterly devastating. I was moved to tears. Freda then led us in a group prayer as all of us recipients held hands in a circle. In this beautiful garden surrounded by new friends who share the gift of life, below the bold UNOS sign, we praised God, with whom “ all things are possible.” Freda , who also holds a Master’s in Divinity, led the most poignant prayer, a prayer of remembrance, honor, celebration for not only organ donors but for our healthcare teams and our own lives too. Again, I was moved to tears, realizing that I have outlived two people who were movers and shakers in my own transplant – Dr. Theodure, my transplant doc died in 2003, and Mary Wallace, who worked at CTDN.
Following the moving time in the garden, we entered the lobby of UNOS again to cool off and have a late lunch at 4pm. Sadly, the big difference between this “American” filming trip and our Japanese filming trip last October is the food. I hate to admit it but I just don’t care for sandwiches or popular American foods. It seems like there are a limited range of options for quick foods here- pizza, burgers, hotdogs, and sandwiches. WTF! All contain overly salty meats and too much fat. So on our fourth day of ham sandwiches and an intestine that hates me, I swallowed yet another sandwich. Sorry about the bitching, but when we were in Japan, our food choices – which were cheap, plentiful and everywhere- included sushi, ramen, curry, bento, donburi, okonomiyaki, and so much more. Ah… my cravings. My stomach is so Japanese!
Anyway, after lunch, we had a quick interview with the camera as five of us recipients reflected upon what it meant to be at the Donor Memorial together. Also, today was July 17th, the day that the new Japanese transplant law goes into effect. Now, children under 15 can donate and receive transplants, and brain death legally becomes death for those who chose to donate organs. It also allows new provisions to allow families to consent to organ donation. This law, passed in August, 2009 after the lobbying of many of the key players in the Japanese transplant conversation, is a step in the right direction, although many fear that the hospitals may not be equipped, educated or willing to facilitate donation with limited staff, funds and infrastructure. I pray that this will open some doors, and at the very least, allow the public to be more aware and start thinking about organ donation. I realized that after visiting the UnitedNetwork of Organ Sharing, which was designated by Congress in the eighties, that the infrastructure for organ donation must start with the government’s willingness and belief in the process, and must lead to a centrally organized institution that sets the policies and processes to make it fair and efficient. Will Japan’s donor network ever be as big as UNOS?
After our filming, we headed upstairs to visit the Organ Center, the room where the central database is held and where staff work around the clock matching organs to the correct region and ultimately to a patient in need. We saw on the wall a large map of the United States and the 11 regions that UNOS oversees. Region 5, which is our region, covers California, Nevada, Arizona, Utah and New Mexico. Wow. That’s a lot! Above the map were five clocks with each time zone. There were computers, phones, notebooks, files all over each desk. In the room next door was a huge computer, THE COMPUTER- that contained information on the 108,000 Americans waiting for organs. I know of at least two people I care about deeply whose names are in that computer. It was truly impressive to see the combination of information technology, software/hardware, round-the-clock manpower, policies, medical personnel and amazing orchestration that occurs in that building. So many things are happening behind the scenes when we receive our “call” that an organ is available. Our main focus is survival-getting through the surgery- yet so many people are involved in matching, procurement, transport, surgery preparation and aftercare. We saw familiar logos decorating the walls of UNOS- pictures of the Rose Parade Floats, the Donate Life logo and other more historic photos and posters showing historic milestones in transplantation. The staff we met in the Organ Center stated that they rarely meet recipients in their job and what a gift it was to them that we visited. What a gift it was for us!
The afternoon was so meaningful. Not only did we meet new friends, not only did I share the intimate moment of remembering James with Doni, not only did we see behind the scenes in UNOS, but I gained a new meaning of what UNOS really means. We are UNITED from organ transplantation, we have a NETWORK of comraderie that surpasses geography , age and race; we SHARE so much not only with fellow recipients but with transplant professionals, policy makers and donor families. It was truly impressive.
As we departed we all hugged, but rather than saying “goodbye” we said “see you at the transplant games!” because in two weeks we will all meet in Madison , Wisconsin for the ultimate celebration and remembrance event.
The ten of us piled into our white van again. Just down the street were the headquarters to Phillip Morris, USA (makers of cigarettes) and we found it an incredible irony. We joked as several of us gave the building the bird. We drove around downtown Richmond to observe the cobble stone street, plantation –like capitol building, and railroad tracks. There was a confederate feel to the place and a strong tobacco culture made evident by historic brick tobacco warehouses and a column of shops named “Tobacco Row.” How ironic that UNOS was here!
We headed back to Washington DC, hoping for better luck with traffic. In the car we debriefed about the day; the most valuable thing about our film crew , in my opinion, is that everyone “gets it” and that this is a labor of love to each of them, and they enjoy what they’re doing despite limited rest and food, bad traffic and long hours.
Marc wanted to get some footage of the sunset so as the sun dropped in the sky we began to seek out a nice scenic location made evident by road signs. Maybe Stonewall Jackson’s memorial? Maybe a civil war battlefield? We couldn’t find anything and were getting nervous. Around 8:10 we pulled off towards the Virginian town of Frederickberg, which is near another Civil War battlefield, and the site of George Washington’s birth. We drove through the flat town with more historic streets and quaint Southern houses, with their non-disabled-accessible elevated front porches decorated with rocking chairs. Marc didn’t like any thing he saw. Just as we were about to give up and head back towards the freeway, we came across a bridge over a large river. We pulled over to the side, jay walked to get on the bridge, and saw the most scenic view ever- a curving river embraced by woods, a church steeple in the distance and most importantly, a blazing red, orange and pink sky of the sun seeking new beginnings. We stood there for a while admiring the sky, watching a group of canoers enjoying a summer’s evening below, and blew our traditional soap bubbles in honor of our donors over the bridge . We watched as the bubbles floated into the sunset, holding on to life as long as they could – just like all of us. The heat had waned and the temperature was perfect. It was hard to believe it was close to 9 pm. After five days in DC it was the perfect way to spend our last evening- just to stop, be together and just BE. It was the type of scenery that invites prayer or invites the urge to sing.
We headed back on Interstate 95. During the drive we played a game in which Dan recited all the States and we all counted how many of them we’ve been too. Then we recited all the countries and counted . Whomever had been to the most won. In our group of ten, we had all been to anywhere from 5 states to 40. I myself counting 33 states and 12 foreign countries. Not bad for someone with CF and two lung transplants. I am truly blessed. Within that van, I realized more so than ever, that the people I am dealing with are truly “yoooshuu” which is the Japanese word that means “noble, educated, ambitious, well achieved” or some combination of all of that. I was amidst people ranging from age 29 to 41 who had really made something of their lives and were smart, passionate, driven and goal oriented. I really felt connected to that spirit. Why were we so lucky? No doubt because of our upbringing, our genes, our own drive to live FULLY.
We arrived in DC around 10pm. One of the wishes of our crew members was to eat at Ben’s Chili Bowl, a historic restaurant that was famous for their chili dogs. We arrived around 10:40pm. The restaurant was established in 1958 in a predominantly African America neighborhood called the U street corridor. It was one of the only businesses that survived the riots of 1968 that broke out in the neighborhood after Martin Luther King, Jr. had died. The restaurant was packed even so late at night. Its walls were packed with historic paintings and photos of famous African Americans- MLK, Malcolm X, Jessie Jackson to name a few – as well as celebrities who had eaten there – Bill Cosby, Oprah, the Supremes, and of course, Obama.
Now there is a term I used when I eat at places like this. It is called “GI suicide.” I know that eating this kind of food will tear up my intestines but since the crew was so excited about eating here and it was after all a historic place featured on my favorite channel, the Food Network, I was eager to try too. I started the meal with 5 enzymes. Then half way through I had four more, then I topped the meal off with 3 more. So I hope I ate enough to help me digest cheese fries, a pineapple milkshake , potato chips and a large hotdog with onions, mustard and chili on top. The cheese fries, which I had hoped would be sprinkled with grated cheddar cheese, were instead bathed in a yellow orange concoction that is supposedly called cheese, that is a mix of cheese whiz and what my father calls “petroleum oil”. Is this really food? Does the yellow gel have anything to do with real cheese? Yet, I have to admit it was tasty… in the small quantity it was. I can’t say I would eat more than one by any means. It was an experience I enjoyed but, like Naomi and Yasu, we probably wouldn’t return.
It was past midnight when we had enough fries and chili, so we returned to the hotel to pack and prepare for our next day, our last day. At 12:45 AM when I finally laid down for bed, I had one of the great feelings of satisfaction. My day was full with friendships, laughter, beautiful scenery, rare opportunities, and topped off with famous chili. Thankfully I only had one episode of GI upset during the night : ) which was a lot better than my first night in Washington DC when we had Indian food.
I woke early with my heart racing as I imagined the swimming race at the upcoming Transplant Games. My anxiety grew as I imagined being up there on the starting block looking into a deep blue and unwelcoming cold pool of water and hearing that pistol go off resulting in the adrenaline and pressure of racing. Then I imagine the gasping for breath, the burning of my muscles, and the hypoxia involved with a swim race. Of course, I couldn’t get back to sleep as my nerves began fueling my brain with stress about the Transplant Games coming up in 2 weeks. Back to reality, I realized this was our last day in Washington DC, a free day , where we could explore DC for a few hours. Our goal: to go to 2 Smithsonian museums. We wanted to take our Associate Producer, Jennifer, to the Air & Space Museum so she could take photos of the space ships and buy souvenirs for her 3 year old son who is fascinated by anything space related. Then we had a strong craving to visit the Smithsonian’s Museum of the Native American. Our time was too limited to actually visit the museum, but we wanted to eat at their fabulous restaurant- one of our favorites in DC – for their delicious “FIVE REGION PLATTER”- a mix of Native American foods from the five regions of Native tribes- the Southwest, Pacific Northewest, Plains, North Eastern Tribes and Southeastern tribes.
We were picked up by our van and first went to the Jefferson Memorial, which was buzzing with tour busses in the blazing morning sun. The temperature was already approaching 90. Amazingly there were many joggers around Rock Creek park and on the banks of the Potomac. I am convinced that East Coasters are heartier and evolutionarily advanced to deal with temperature extremes that us Californians. I just don’t do well in heat- my feet swell, my skin turns to a prune and I get tired, dizzy and unmotivated easily. In the Jefferson Memorial, we walked around with Nick following us with his camera. We looked up at Jefferson, and read his famous words scripted on the tall marble walls that American allows “life, liberty and the pursuit of happiness.” Amen. What an honor to read his words, to embrace them, to live them fully.
Afterwards we headed to the smithsonian for a quick scoop of the Air and Space Museum in a record 40 minutes, followed by another 20 minutes in the gift shop. Air and space- such a far world away from anything I have ever thought of.
We headed across the street to the Smithsonian’s Native American Museum, where there happened to be a special festival celebrating the music, art and culture of Peru. Since this is the place that I envisioned going to someday for our honeymoon, I saw this as a sign.
However, time was short and we headed straight to the most famous and loved cafeteria. We bought three “Five Region Platters” plus three servings of Navaho fry bread. Each platter had a buffalo steak (Plains indians), wild rice (Northeast Indians), bean salad (southwest indians), salmon (Northwest Indians) as well as various sides such as mushroom bread pudding , squash, beat salad, and cod salad. Very interesting, fresh, natural and healthy food- so refreshing after last night’s processed chili dog. We devoured the food like Californians who were deprived of vegitables for days.
Unfortunately, our time was limited and we had to head back to the Stanford dorm to pack our bags and head to the airport. Our tourism aspect of our trip was short but sweet, and by this point we were pushing to keep going , and quietyly looking forward to all passing out in exhaustion in the plane ride home to the cooler Bay Area.
Thank you for your interest in our stories. I hope you all have a chance to eat at the Smithsonian’s Museum of the Native American some day.