Chapter Twenty-Eight: The Transplant Games

In that dimly lit room, there were hundreds of people with different faces, hairstyles, and body shapes, but all these people shared the commonality of their wet eyes glued to a large screen about The Transplant Games. Emotionally-charged flashes and segments of transplant recipients slicing through the pool, dunking a ball into the netted hoop, slamming a tennis ball across the court, and shiny gold, silver, and bronze medals hung proudly on their necks. Us audience members felt the tears slide down our cheeks when we saw the visual images of donor families hugging and holding on to one another over the physical demise of their loved one, but ongoing and lived on memory in their various transplant recipients with a beating heart, a breathable pair of lungs, or a high-functioning and pumping kidney or liver. My breath was taken away from me when it was as clear as day from the video clip that the Transplant Games were not about the loss of life, but the gain and celebration of life for everyone.

The official logo of the National Kidney Foundations Transplant Games

This was the first memory of The Transplant Games that charged at me when I rewound to my times with **Janice and **Harry absolutely beaming with a sheen to them when they shared their experiences of the Transplant Games with me. I wanted their shine to radiate from me. I wanted to belong and connect. Most of all, I was still on the search of finding my purpose that was sidetracked when I was trying to connect with other transplant recipients and my short time of involvement with the National Kidney Foundation TransAction Council. My gut instinct was saying that I would find my purpose outside of my comfort zone and homeland of New York.

When the 2008 Transplant Games held in Pittsburgh, Pennsylvania came to an end and it was announced that National Kidney Foundation was hosting the 2010 Transplant Games in Madison, Wisconsin, I did not hesitate to hungrily find out all the details about the Transplant Games and how I was going to participate, whether it was as an athlete or a spectator. What exactly were so special about these Transplant Games that Janice and Harry could not fully explain to me, and a 10-minute video clip could not completely capture? Could I possibly participate as an athlete in the 2010 Transplant Games when I was a complete klutz? My questions were soon answered with the facts.

The U.S. Transplant Games were held every two years in a U.S. State where transplant recipients, donor families, living donors, and anyone who was even remotely involved with the organ transplant community merged together as one. Each U.S. state had its very own team of organ transplant recipient athletes that made the decision to join their state team, participate in a specific sport or sports to compete against other state teams, and, above all else, challenge and push them above and beyond in the sporting events to prove to themselves and to the public that an organ transplant saves, preserves, and creates life to the maximum. The sporting events included swimming, tennis, track & field, basketball, badminton, golf, bowling, cycling, table tennis, volleyball, racquetball, ballroom dancing, and a 5K race. In addition to the major athletic events and ongoing partying over “The Gift of Life,” there were triumphant and heartbreaking moments dedicated to living donors and organ donor families in ceremonies and a beautiful and one-of-a-kind quilt that contained patches from donor families dedicated to their loved ones whose organs were donated.

Ah-hah, I concluded, so these were the facts. Now, it was a matter of determining if I was going to compete as an athlete as Janice had done or be a spectator like Harry had done? After I officially signed up with my U.S. Transplant Games team, “Team Liberty,” I researched the athletic participant information with gusto and enthusiasm. I was particularly focused on the swimming because I was already a swimmer in my free time as a way to alleviate stress and the aching pains that my lower back and left hip area often inflicted upon me with sporadic muscle spasms. My excitement about participating as an athlete quickly fell to pieces as fear over the uncertainty and unpredictability of my left hip and lower back flaring as it had in the past. By no means was I going to take any risks or chances with an athletic event that may cause unforeseen damages to my lower back and hip. Sure, I was more than well aware that I would be in the company of people who had also received an organ transplant and were more than familiar with the aftermath health effects, but I also knew that I was going to go alone to the Transplant Games and I really wanted and needed my time to meet with others and digest and take in all the indescribable experiences. After assessing the emotional, mental, and physical factors of the Transplant Games, I finally registered as a supporting spectator. I would attend the various sports as I wanted and cheer and scream like no other! My Dad had asked multiple times if I was really sure that I was going to go alone, and time and time again like a broken record parrot, I said: “Yes, I need to experience all on my own.”

So, I finally experienced and lived the Transplant Games all on my own in Madison, Wisconsin in the summer of 2010. Madison, Wisconsin exceeded any expectations or thoughts I had in cleanliness, friendliness, wholesomeness, and realness. I fell in love with the city, the people, the combined historic and modern surroundings, and the fresh food that was undoubtedly decked with the richest and most delicious of cheese. But, above all else, I fell in love with the Transplant Games that had led me to Madison, Wisconsin.

The 2010 Transplant Games were held for four days, and there was no possible way to describe such the indescribable event. Meeting with my New York/Connecticut/New Jersey Team Liberty team members was my first round of knowing and feeling the excitement of life, the power of organ donation and transplantation, and the majesty of the Transplant Games. I bonded with my teammates before and after a sporting event, agreeing with them that we would continue our bonding by meeting in New York City when we returned back home. In the daytimes were talks and laughs with my teammates who were knots of nerves and excitements before their multitude of sporting events that they were competing in. Most participants on my team and all the other U.S. teams did not know the word “limit” and would participate in as many countless sports as they could until they were aches and pains in their bodies, but alive and exuberant in their spirits. I cheered them on, hung on to every story and word with anyone and everyone I encountered, had pictures taken of happy and lively faces, and gazed adoringly at polished and shiny medals. At night, we partied, laughed, and talked more over fresh pies and cookies that our hotel always had for us. In my bed before I fell asleep, I was hyper with ongoing and whirlwind thoughts about the purpose of my life and how my health challenges had brought me to safe, happy, and free place where I could cry for my donor family that I thought about throughout my trip and where I could befriend the most beautiful, extraordinary, and incredible people that I had ever met in my entire life.

Janice and Harry were right. That feeling of home and belonging was here at the Transplant Games. I belonged to an endless family of strangers by face, but not by life experiences that were touched by organ donation and transplantation. Everyone wore a nametag of where he/she was from and what their involvement with transplantation was along with a signature pin to that state and uniform catered to their particular state team. For example, Team Liberty’s signature uniform was of the Statue of Liberty foamed headband along with a Statue of Liberty pin. I did not have to hide my health that I was married to since I was a tiny toddler when I was at the Transplant Games. With the uniforms and pins individualized to a particular team and bright and hanging nametags, I did not hesitate to ask: “Hey, what transplant did you have?” or “Hey, what immunnosuppressant medications are you on? Oh, yeah, prednisone…HATE IT!!” A typical swapping of state pins was conducted as the connection that I craved for as long as I could remember was forged. I did not have to shy away from the crowd to announce to them: “I have had two kidney transplants. I think about my organ donor families every single day.”

The 2010 Transplant Games Team Liberty uniform and nametag

It was the stories and the faces that touched my heart and held a place there above anything and everything else, especially the stories of organ donor families. One of my team members was a Catholic Priest who I literally bumped into around the ping-pong tables as we awaited to find out the next event that we could go to cheer on our other team members.

With a completely baldhead, gentle smile, and wire-rimmed glasses, he shared his personal transplant story with me when I told him that I was there as a spectator and cheerleader for the Transplant Games: “Well, my story is that I donated one of my kidneys to a stranger.”

He said it so easily and nonchalantly that I asked: “Wait, what? Did you really just say that you donated one of your kidneys to a stranger?”

His laughter warmed me and he repeated again in his thick Irish accent: “Yes, I donated one of my kidneys to a stranger.”

He then told me that he was now residing and doing missionary work in Japan, trying to promote organ and tissue donation and transplantation because Japan was still somewhat behind in their support and understanding of donation and transplantation. I did not know what to say to him. I was speechless. I could not believe that he could donate one of his kidneys to a complete stranger, and so I told him just that, and he said to me: “People like me who donate one of their kidneys to a stranger are known as anonymous altruistic living donors. Well, I’m sure you know about the massive organ shortage and about how taboo organ donation and transplantation still is….not only in Japan, but around the world. You ask someone if they are an organ donor and they get all uncomfortable. I really believe that altruistic living donorship will become more and more common.”

His words about the organ shortage and registering as an organ donor turned a light bulb on my head. I had never really thought about the organ shortage because it just seemed natural to me that people would donate their organs when they died. It never occurred to me that there were people who would not donate their organs—until speaking with this Catholic priest. The wheels in my head began to turn to find out more about this organ shortage and especially in New York and what could be done about the organ shortage. Mental note to self was made.

I befriended a 21-year-old from Pennsylvania who had his heart transplant when he was 8 months old and who won the bronze in swimming, a kidney transplant recipient from Georgia who was studying to be a doctor and received his transplant from his Father, a liver transplant recipient just a couple years younger than me who had her own clothing line to promote organ and tissue donation and transplantation. I became particularly close to two double-lung transplant recipients apart of Team Liberty who had suffered from cystic fibrosis; One was just around my age and with her boyfriend and the other was a few years older than me that I talked endlessly with about food and transplants. I cried at the “Coffeehouse Conversations” event where transplant recipients and donor families came up to speak their personal stories and experiences via microphone. I cried at the Donor Recognition ceremony when smiling and pensive faces of deceased donors flashed one by one on the overhead screen. A heaviness of emotion sat on my chest when I roamed from one Organ Donor Quilt to another with the most unique and bittersweet squares dedicated to their loved ones.

The Donor Quilts

I internally adopted a loving organ donor couple who said to me:

“Our daughter would be your age about now. She died ten years ago and saved as many lives as she could with her organs. She is our hero.”

I was humbled, looked down, and then slowly looked up at her Father who towered over me at 6’4.” A framed pin picture of his smiling daughter with her brown curls in a French twist caught the light wherever he walked. I said softly: “Your daughter is beautiful. You and all the donor families and donors are our heroes and family.”

Her big, hulking Father reached down to my barely 5 foot stance in the tightest of hugs. He was shuddering with tears, which only made my throat close up, tears fill my eyes, and wondering where my organ donor families were and how I could get in touch with them.

I was numb when the last day of the Transplant Games came, and went off with an enormous sendoff in a huge auditorium with anyone involved with the organ donation and transplant community all gathered together. It was almost surreal being with my other Team Liberty team members in one huge room with so many people that had been so touched and impacted by life and by death. I felt so tiny and insignificant in that place and in that time, but I had never felt so larger than anything imaginable at the same time. It was never clearer to me than it was then that my purpose lied in putting an end to my hiding and self-pitying and selfishness about my health, and to start telling the world and anyone and everyone about my story to help so many others who were waiting for an organ transplant and who had not been as lucky as I was today. It was not about me hoping, wishing, and waiting for connections or what the world could give or bring to me. It was about me bringing all my experiences and stories to the forefront and giving back to the organ donation and transplant community and the world. It was about me ensuring that my organ donor families and organ donors’ memories and stories were not forgotten and always lived on through me finally speaking out. The Transplant Games made me see that I was not alone in my health challenges, we were all somewhat connected in this world, and, most of all, it was about celebrating and living life to the fullest because an organ transplant really was a priceless gift.

So many people touched by organ donation/transplantation

My life had forever changed and transformed in that auditorium and especially on the plane and then bus ride back home all because of the Transplant Games. As the sporting events, the transplant recipients and their families, the stories I heard, the streets of Wisconsin, the organ donor families, my organ donor families and the mystery of them, and how the challenges, heartaches, and pain in life can lead to the most beautiful and special of other life moments played and replayed in my head over and over again, I knew I had to do something and that was sharing with the whole world about the majesty of the Transplant Games and the ultimate power of organ donation and transplantation.

When my Father came to pick me up, he took one look at my face, broke out in his warm smile, and said slowly, yet cautiously: “So, how were they? What were they like?”

I stared at him with bright eyes and a grin that stretched across my face. The memories were still playing over and over again in my head. I tried to find the right words, but the only words that came out of my mouth were: “I can’t begin to tell you, Dad. You have to experience it. You have to live it.”

My Dad gave me a quizzical expression, as if saying that he had never seen me this way before. If he only knew. If only the world and every single person knew about organ donation and transplantation and how much it impacted everyone with the facets of life and death. Well, I made that decision that I was going to be the one to tell the world. From here on in, my real journey of living my life to the fullest with my purpose had begun. No vow or promise, but just the way it was from now on.

**denotes fake names to protect privacy of individual