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It has been an eventful week with little time to blog about the US Transplant games until now, as I fly back to the Bay Area. For the fifth time, I attended the biannual US Transplant Games as a member of Team Northern California. This was the 20th anniversary of the US Transplant Games- an Olympic style athletic competition whose goal is to raise awareness about organ donation and transplantation. Amazingly, not many people in the transplant community have heard of or experienced this exhilarating event. To me, I was introduced to the Games in 2002 by my dear friend, Tony, who received a double lung transplant six months after me, but unfortunately passed away from rejection in 2003. Since his death, I have promised myself that I would attend every Games while I am alive and able. Praise God, I was able to attend on the tenth anniversary of my transplant. Words can’t really describe the range of emotions that come with attending this event. At the transplant games, over 1500 transplant recipients come together to celebrate the gift of life and to give it their best in over 13 athletic events. It is the only Olympics where steroids are legal (and often required), scars are in, and your competitors cheer you on. Most importantly, over 500 donor family members come as well, to be honored, remembered and to receive thanks from all of us recipients. Other organ and tissue donation supporters, healthcare providers and friends of the community join as well. It occurs every two years in different cities. Past years have brought me to Orlando, Minneapolis, Louisville, Pittsburgh and now, Madison.
For a quick news segment on the Games from Madison TV see: http://bit.ly/9vyyx7
What made it extra special is that our Power of Two film crew and support staff joined in order to film the Games, and exhibit a special booth at the Transplant Games Exposition- a sort of open house for all transplant related companies, non-profits and events. For two days, the Power of Two booth invited Games participants to come into a specially made “Power” studio to share their story for 2.5 minutes. In addition, information was given out about the Power of Two, while bubbles were distributed, and our trailer was shown on a small TV screen. It was a great way to spread the word about the film to thousands of people. I am so grateful to our team who made this happen! Thank you Jenny, Marc, Clive, Dana, Carl, Andrew, Marcie and Perkins Coie volunteers!
As with all Transplant Games, I try to train beforehand for months. But with our increasingly demanding lifestyle, my wedding and job, it has been very difficult. I have faced health challenges that made exercising daily cumbersome, so I went to the Games with low expectations to win. When I saw that Isa and I were the oldest in our age group – the thirties- and that the vast majority of our competitors were kidney transplant recipients under 35, many of whom do not take prednisone or take very low doses of immunosuppression- my first reaction was “Oh shit, they’re all kidneys. I’m screwed.” But thanks to a combination of inhalers and a lot of sports gels – each with 25 mgs of caffeine- I gave my swim races everything I had.
The first day was the 100 yard IM swim in which one swims all four strokes –butterfly, breast, back and freestyle- for one lap each. I was so nervous I felt nauseas, shaky and slept like shit the night before. I kept imaging being on the starting block and hearing the referee say “take your mark” as I tried to sleep! Not a good way to doze off! Nonetheless, we arrived at the University of Wisconsin swimming facility the next day just to meet my dear friend, Missy, who was a CF double lung recipient from Team Rocky Mountain (Colorado) in the locker room. Together, we passed around our bronchodilator Ventolin inhalers as we “doped up” for the swim, while we lamented about how hard the competition was and how we would just do our best. Missy, who had her transplant 13 years ago, faced triple rejection in 2008 and found herself on a ventilator during the 2008 Games. We had swum together in previous transplant games and to know she was facing major setbacks in 2008 was heart breaking. Well, fortunately, due to her fitness level and immense determination, Missy made a comeback and was ready to race in the 2010 Games despite a lung capacity under 50%. When I saw her swim, I got teary eyed. She had worked so hard and now she was back, although she struggled and her mother met her at the finish with an oxygen tank. Those are the beautiful and inspiring stories that one witnesses at the Games. I believe that transplant recipients who go to the Games possess a special determination, a drive and motivation beyond the ordinary and in the pool, track, court, it shows. Some athletes are amputees, some are mobility impaired and some are visually or hearing impaired. Some are die hard, competitive athletes, and others are not able to do a whole lot but come anyway to cheer others on, and to feel the immense spirit of life, love, strength and gratitude. Our amazing team manager, Cathy Olmo said that she was asked to describe the Games to someone who had never been. Truthfully, the Games are hard to describe. They are like a summer camp full of love and support for the entire transplant community. They are a respite from the challenges of daily life and an escape into a world where people “get it,” where you are not judged for your scars, your body, or its limitations or inabilities. It is a place where people bond instantly even in the airport because we know who is “one of us” based on their green bracelets. It is at the Games that I feel healthiest, because I am strong and proud to represent the success of re-do lung transplants, and all the setbacks and anxieties of my lungs disappear because for a few days I can just be the best I can and feel “healthy.”
The opening ceremonies are especially moving. Each team lines up its athletes and a parade of teams enters the large arena with unique costumes signifying their state. This year, Team NorCal wore orange/yellow tie dye t-shirts, and foam hats with the Golden Gate Bridge on them. Other examples included Team Maryland, who wore crab hats, and Team Liberty (NYC) who wore Statue of Liberty foam hats. The spirit is amazing and everyone is high on life. The room is steaming with adrenaline. After the procession of teams, the donor families enter. Each team has 5-80 donor family members and they enter caring photos of their loved ones and carrying pieces of the national donor quilt. Instantly the audience stands, and applause lasts for more than ten minutes. There are tears from all and lots of hollering. The opening ceremonies also include a donor-recipient union, and music. For the first time, Isa was invited to play the Star Spangled Banner for the opening ceremonies on her bagpipes, representing the potential of lung transplant recipients. I was so proud of her when she stood up there, playing bagpipes in her full Scottish outfit, blowing as hard as she could. Soon after she started there was a hum coming from the audience as many people started joining in chorus to the words of our country’s song. It was so moving to feel the spirit. The opening ceremonies end with the Athlete’s Oath of good sportsmanship and the Lighting of the Games flame by the previous Games’ strongest male and female athlete of the year.
Because of my previous year’s experiences, we knew fellow recipients and donor families from many teams and like old friends, we reunite with embraces every two years. I blew me away how many people I knew and how many people knew us, probably because of our book and online presence. I also met Doni on Team Maryland, who received the pancreas from James, my 1st lung donor from 2000. I had met her for the first time in July during our Washington DC trip, but now I was excited to see her competing in bowling. I met amazing donor families who stories touched my heart. For example, we met a family whose 22 year old daughter had CF and received an 11th hour double lung transplant from a non-blood type matched donor. Unfortunately, she had severe complications and then died two years later. When she died she became a kidney donor and tissue donor. What a legacy to leave. See www. life4cora.com. I also met a woman from Team Kentucky who had six organs transplanted- stomach, pancreas, large and small intestine, liver, and spleen- two years ago, and was well enough to compete in swimming.
On Saturday I swam only one race – the 100 yard IM- so it wasn’t too challenging. I remember jumping off the starting block and giving that damn swim everything I had. I swam so hard, so strong and gasped like there was no tomorrow. In the final lap, every muscle in my body burned and I was so hypoxic that I could no longer see and could only feel my way to the wall. All my technique flew out the window when I all I could concentrate on was going as fast as I could to finish. Though I didn’t earn a medal (darn kidneys beat all the lungs!) I had satisfaction knowing that I swam the best damn race I could and truly gave it 1000%.
One humorous moment was when I sat next to a 60-something year old man who was competing for the first time in swimming. I forget what team he was from but he was very nervous. He had never dived off a starting block before and wasn’t sure if his goggles would stay on. I explained to put your chin down when you dive off and the goggles will stay on. His response was, “Which chin?” and I had to laugh aloud. The joke is that many transplant patients get a double chin from the prednisone and the fact that we could laugh about this mutual side effect made the games all the more enjoyable.
After another anxious and sleepless Saturday night, I woke early on Sunday to face my biggest swim day of four races. We arrived at the indoor pool around 8:30 and began to warm up. Luckily the pool’s depth and temperature were perfect and I quickly made friends with the pool- a great advantage when racing. At 9:00 am the swim meet started and Isa was up for the 100 yard breaststroke. Pumped with caffeine and inhalers, she swam the best she could in less than 2 minutes. Later in the day Isa won a bronze in the 50 yard breaststroke. Go Isa!
At 10:40 I swam the hardest race of my life- the 100 yard butterfly. I had always wanted to do that – the most challenging swim event- because that is my nature to beat myself to the ground in challenge. Training was hard- I had only completed two 100 yard butterfly practice swims without stopping since my last hospitalization for parainfluenza in June and I feared my lungs would not cooperate. There were only two people in my age group who were crazy enough to sign up for this so I was guaranteed a medal. My competitor was a living donor kidney recipient who had swam competitively in the past. Well, of course, she blew me out of the water with a 1:20 minute time. I did my very best and my goal was to finish without stopping, since it is so lung challenging. At the 75 yard mark, the rhythm of my stroke was disrupted as a huge splash of water entered my face and mouth; as a result, I sputtered and gasped and had to take a 2 second break at the wall to catch my breath. Darn! But as I came towards the end of the 100, with my body burning and my eyesight gone once again, I could only feel the power of my entire body pushing forward, thinking, “I’m doing it! I’m finishing! I ‘m going to make it!” and that I did in 2:04 minutes. Though I earned a silver medal out of default, I came in second in my heat (which included many great forty something swimmers – almost all kidneys). Can you tell I have kidney envy?
About 20 minutes after the hardest race I ever did, I joined a team of four fabulous Team NorCal women for the 200 yard IM relay. Lara (lung) was going to do 2 laps of backstroke, Nancy (kidney) was going to do 2 laps of freestyle, Isa was going to do 2 laps of breast stroke , and I was going to do 2 laps of butterfly (again). Being on a relay team was absolutely exhilarating because we cheer each other on IN ACTION. Not only are these lungs good enough to swim, but they can YELL!! I almost lost my voice after cheering for so many of my teammates and friends. We did our best in the relay and ended up with a silver medal (for the second games in a row!). We were thrilled.
After a short lunch break, I continued in the afternoon with another 50 yard butterfly race (can you tell it’s my favorite stroke?) and a 50 yard backstroke. Competition felt harder as post-lung fatigue set in. There were seven women signed up for backstroke and eight for fly. One woman from Team Northwest had huge muscles and looked like a marathon runner. Of course she was a kidney transplant recipient, and I looked at her and thought for a moment, “I’m screwed. Why even bother?” But I still did my best , gave it my all… dedicating my swims to Anna Modlin, my dearest friend who just recently got listed for a double lung transplant at Stanford due to CF. But during my races, all thoughts disappeared from my mind as I can only concentrate on moving and breathing. For the backstroke I don’t even remember swimming, I only remember following the lights on the ceiling and struggling to breathe despite the near drowning sensation of water splashing in my nose and mouth. It is likely the closest thing to water torture method (water boarding?) I will ever experience. With the Grace of God and my donor’s spirit, I was able to get a silver medal in the 50 backstroke. For the butterfly, I came in fourth and Isa came in fifth, much to her disappointment since she trained much harder than I did.
We left the pool around 5:30pm, after being there ALL day. My spirits were relieved that two days of competition were over. I was coming down from an incredible high. In disbelief, my expectations were NOT met; I did not walk away from the Games without a medal. I did not suffer performance consequences after my rejection , CMV and parainfluenza in the last year. Thank God for performance enhancing inhalers and steroids!
After an exhausting day, it was hard to believe there was more to do. We enjoyed Wisconsin cheese and brewed beer for dinner with Isa’s very supportive in-laws and extended family- our greatest cheerleaders-, and then headed to the “lung gathering” party that night, organized by the most famous and fabulous Joann Schumm from Team Upstate New York. There were over 30 lung recipients there but to the best of my knowledge no one at the Games with a repeat lung transplant. The lung gathering was a very humbling and grounding place for me to be after a day of intense competition that was, truthfully and shamefully I admit, all about the medals. In my competitive spirit , I sometimes get so caught up with competing, going for the gold, lamenting about my kidney envy and own inadequacies in the pool, yet forgetting what it means to really be at the Games- it is about SURVIVAL, not speed, for many lung recipients. I met a woman named Cathy who was 25 years post heart lung transplant. What a gift! I can’t imagine living that long after my transplant so she gave me so much hope. Wow!! Several lung recipients that I met were facing chronic rejection and were on oxygen. They were not well enough to compete but came just to experience the games. Their courage and positive attitudes were so inspiring. It hurt me to see them on oxygen suffering from hopeless chronic rejection without the option of a re-transplant. How courageous of them to come to the Games to see other lung recipients with better luck and odds than they. Yet they harbored little resentment and were thrilled to be there. With our film crew there, we were able to capture by film some words of insight and the amazing stories of many of the lung recipients at the party. At the Games, there are 1500 athletes and only about 120 lung recipients, so though we were far and few between, we celebrated being there and each other.
The night grew late as we filmed what turned into an informal support group among the lung recipients. We missed watching Team NorCal compete in basketball, and we missed the very emotional Quilt Pinning ceremony in which donor families who made a quilt square for the National Donor Quilt in honor of their loved ones pinned it up and shared their story in front of an audience. Though I was sorry to miss other events, I needed the lung gathering to ground me after my competitive spirit got the worst of me at the pool. With fellow lung transplant recipients, I was humbled and reflective as I learned from so many wise lung “teachers.” One of the greatest parts of the evening was when we returned to the hotel, I saw the biggest smile on Lara Borowski’s face. She had taken a ride on a Harley back to the hotel with a lung recipient from Madison. What a thrill ride that was for her!
On Monday, we headed early to the University of Wisconsin Track and Field. After some scheduling confusion, we learned that woman running the 100 meter dash were supposed to check in at 9:30 AM for their preliminary race. Lara, who signed up for the 100 meter dash, was with us at the hotel at 9:20 when we heard this. Within a flash, we piled into the rental car and Andrew drove like a maniac towards the University, swerving through lanes, honking at traffic and cussing like a true Northern California. Lara was in heat 7 so there was hope. At 9:46 we opened the car in front of the track and she ran out, barely eating breakfast. We parked, walked in the main entrance a few minutes later, only to see in the distance Lara crossing the finish line. She made it, not only in the nic of time, but also in first place. She made it to the finals!
For the rest of the morning, we struggled to find shade and coolness as the Madison temperature rose into the high eighties with high humidity. The sun peaked out from clouds raising the temperature considerably but providing relief when it hid behind clouds again. Isa, Lara, Tiffany (a five time kidney transplant recipient) and I were supposed to do a 4 x 100 meter running relay. We had trained together every Wednesday for the past six weeks at the Stanford Track. On the last training run last Monday, I felt a snap in the bone of the ball of my right foot and felt excruciating pain ever since. Darn osteoporosis! There was so much pain that I even got an x-ray of my foot prior to leaving to the Games. Though the x-ray did not show a fracture, it may still be an undetected hairline fracture and it still hurts like hell. So, with much disappointment, I had to refrain from joining the relay, realizing that I would either slow my teammates down or I would injure my foot further. So we recruited Kay- who was from Central California and joined Team NorCal for the first time. They did an amazing job with the relay, not letting the relay team of four teenage girls from Mississippi intimidate them. Our stellar relay team ran the 4 x 100 meter run in their record 73 seconds, earning a bronze medal. As I watched Lara fly in the last leg of the relay, I thanked God, knowing that she had a rough year, with severe pneumonia and other setbacks. What a gift that she was here and well enough to run.
Unfortunately, the managers of the track meet lost the results of the women’s 4 x 100 relay and it wasn’t until past 3:30 pm that our relay team was awarded their medals. In the three hours of waiting, we were able to cheer on several teammates and friends, including the famous CF lung recipient, Dottie Lessar who is 16 years post transplant and runs like the wind despite lung functions in the 60’s. What a hero! We also cheered on James (CF double lung) from team Rocky Mountain as he won medals in the men’s 4 x 100m dash. We cheered on Tom Martin and Reggie from our team as they ran the men’s 4 x 100 meter dash alongside team Rocky Mtn. Unfortunately, it was painful to see Reggie buckle on his 200 meter run as his Achilles tore. As the day went on, more and more people fell as their ligaments and tendons tore from overstraining and the side effects of prednisone. The medical tent was busy, to say the least.
We watched Tiffany from Team NorCal do the high jump and jump 3’6″. Wow! Just watching that made my bones break!
Heat, sun, salty sweat and more salt…. The combination engulfed me with fatigue. I did no running because of my injured foot, no competition, yet I was exhausted. We rushed from the track and field to the air conditioned main expo hall so Isa could practice volleyball for the next day’s competition. I joined the practice since there weren’t enough teammates present, and it honestly felt great to play volleyball. I had played in junior high and hated it because I always bruised from hitting the ball or had the ball slammed in my face. But this time, it was wonderful, even though my mobility was limited by a bummed foot.
At 4:30 we finished, headed to the restroom to wipe off our sweat, and changed into nice clothes in the car. After all our time with the film crew, changing in the car with them was no more than a sign of how close we had become.
We rushed off to a law firm in downtown Madison called Perkins Coie. Through Andrew’s connections, they became a sponsor of the Power of Two project. They were so gracious to make a wonderful generous donation which allowed the Power of Two to have a booth at the Transplant Games Expo. As part of their contribution, they offered to host a cocktail hour to honor the Power of Two on the scenic rooftop of their law firm in downtown Madison. From the rooftop, we enjoyed delicious hors d’oevres, and grand scenery of the famous Madison capitol building and distant views of the city. We had invited several friends and teammates from the Games and spent the evening under the warm evening air chatting and reflecting on the Games. Our friend from Japan, Taka, who is awaiting a kidney transplant at the Univ. of Iowa, came all the way from Japan for the Games and we were able to enjoy her company at the event. The day was long and rewarding and the bond that organ donation made between lawyers, Madisonians and Californians was truly impressive.
The following morning was Tuesday and Isa left the hotel early to head towards the Volleyball completion at 7:30 AM to represent Team NorCal. In the past Team NorCal had a very strong team, and had medaled against its rival Team SoCal. This year, the strongest players were not able to come and, although there were a few experienced players, Isa had signed up for the fun of it.
I headed with the film crew to the local bowling alley mid-morning where several of our teammates and Doni (who shared a donor with me) were competing. The bowling alley was filled with energy and enthusiastic happy spirits. There were crowds of people with their team shirts on, hollering at their participants, cheering the bowlers on. I watched Doni bowl and three of our teammates including liver recipient, Kathy Clark; heart recipient, Sharon; and fellow Stanford lung transplant recipient, Jenn Julian. It was Jenn’s first games and the previous day she had won the gold in golf. Her spirits were high and her enthusiasm contagious. One of the best memories of the Games was watching her gleam with the biggest smile from ear to ear as she hit a strike in her bowling competition. I was truly impressed how talented so many people were. They were hitting strikes and spares frequently. Many were on bowling leagues and hit three digit scores pretty quickly. This is by far, not the sport for me since I suck in bowling!
Following the morning, we headed back to the volleyball arena to hope to catch Isa playing the game on the court. Unfortunately, Team NorCal got out within two games. I guess it just wasn’t the year for the team to win!
But the good part of the loss was that we were free for the remainder of the day and, for the first time ever at the Games, we could return to the hotel for a much needed nap. But first… we had to experience Madison’s most famous and raved about frozen custard at Michael’s Custard. After a quick lunch of burgers, pizza and sandwiches (do American restaurants ever serve anything else?) we headed in the 90 degree weather to eat frozen custard in the historic drive thru diner. I need not say how easy it was to fall asleep for my nap!
Later that evening, we headed to the Hilton in Madison for our team dinner, the final team event before the closing ceremonies. As we devoured loads of delicious food, teammates went up to the open mike to share stories about their Games experience. In these stories the true spirit of the Games came out. There was a standing ovation when Reggie, our track player who tore his Achilles running the 200 meter dash, entered the room. I learned of Shawn, a teammate who rode his bike in the 20 km ride, who stopped before the finish line to wait for the very last rider so he could accompany the struggling rider to cross the finish line. I cried with Phyllis, our team’s donor mom, who broke down when, at the request of Lara, I gave her Lara’s silver medal since Lara had to leave early. Every teammate I spoke to was moved by the experience of being at the Games, and we were all motivated to return to the next Games in 2012. The spirit and love in the room is beyond anything I can ever express. You just had to be there.
After the dinner, we walked across the street to the convention center for the Closing Ceremonies. All of us were in our orange and yellow tie-dye shirts and orange hats. Many of us made metallic “clinking” noises as we walked with multiple medals around our necks. With pride we stood high in the stadium knowing we had won the most medals per capita of all teams- 34. The closing ceremonies included speeches and awards for transplant recipients who work hard to promote the cause of organ donation, and for those who overcome the most health challenges to get to the Games. The Courage Award is sponsored by Astellas, makers of Prograf (a standard immunosuppression medication). I was nominated for that award in 2008 after I had my second transplant, but I was not permitted to win this after Astellas learned that I am a lung transplant recipient. Prograf, the main immunosuppression drug taken by almost all transplant recipients, is only FDA approved for heart, kidney and liver transplants. Therefore they do not acknowledge lung recipients at all, not even as a recipient of their award or for any promotional materials such as brochures, scholarships, etc . Am I the only one who finds this offensive and discriminatory?
Anyway, after a number of music routines, dance displays, awards, and speeches, the Transplant Games highlights video was shown on the big screen in which the best visuals from the past four days were shown. You can see the Games highlights video by clicking the link “2010 Highlights Video” on this site: http://www.kidney.org/news/tgames2010/index.cfm.
With team pride and a celebration that all of us did our best, the Transplant Games torch was extinguished and the Games were over. We were tired, fulfilled, accomplished and for me personally, relieved, to have survived yet another Transplant Games experience.
After the Closing ceremonies, we mixed and mingled with friends on a large dance floor for the closing party. The night was long, the heat was dissipating and my hotel room beckoned me.
On Wednesday, Aug. 4, it was our final day in Madison. My mind and spirit was eager to head out for some last minute sightseeing. But, ironically, my body wasn’t so enthusiastic. By 10 AM, we headed out to the famous Madison farmer’s market to purchase some Wisconsin cheese. We toured the State Capitol building and downtown. Not sure why I was so lethargic, I hobbled through the streets with my painful foot and drenched in sweat. Trent, Tom Martin and I had anticipated renting bikes or canoes on the nearby lakes but the heat just invited us to be lazy. We set up a picnic on the shore of Lake Mendota and enjoyed a lunch of cheese, fresh bread from the farmer’s market and snacks from home that no longer fit in our bags.
Ultimately, we headed back to the airport, where we reunited with our film crew and headed back to San Francisco. Unfortunately, their final interview for the film with renowned transplant surgeon, Dr. Shaf Keshavjee from Toronto General, who was willing to fly to Madison for our interview, fell through due to flight cancellations. We were truly disappointed.
Our final filming trip was complete and all of us were deeply moved by the experience. In fact, the two filmmakers who videotaped the 2 minute stories of Games participants in the Power of Two booth, needed some time to recover emotionally from the intense stories they heard while filming. I can think of no other more meaningful final filming experience for the Power of Two that the US transplant Games. There is a book I live by called “1001 Things to Do Before You Die.” I believe that going to the Transplant Games should be #1 on the list for all transplant recipients. I highly recommend everyone involved in the transplant world to consider attending. Rumor has it that the Transplant Games 2012 will be In San Diego, California, but that was not finalized or announced officially at the closing ceremonies like it usually is. Hopefully we can confirm this soon.
Thank you for reading this immensely long post. I will end with a reflective THANK YOU to God who allowed me to survive my fifth Games and Isa to survive her fourth Games without illness or severe injury. Together again, we were able to celebrate the love of donor families, the camaraderie of over 7000 people who appreciate renewed life, health and fitness after transplant, and reflect on this great country’s support of organ donation.
Now… onward to the CFRI Teen and Adult Day Retreat, which started two days ago. We are late, but look forward to experiencing this next high.