The U.S. Transplant Games--Part 2

Soon after the 2002 U.S. Transplant Games, I knew I had to find a way to attend (and participate in) the next games.  While attending the games as a spectator was enjoyable, I’d heard from countless people that being in the games and competing made it more fun.  One problem: the word “athletic” was not one of the Top 10 adjectives to describe me. 

I joined the Team Florida e-mail listserv and I learned the where (Minneapolis, Minnesota) and when (July 28^th-August 1^st) of the 2004 U.S. Transplant Games. 

After many months of fundraising (via corvette raffle tickets), I finally registered and booked my flight (just under $240 roundtrip!).  For my first games, I decided give Bowling and Table Tennis a shot as my “sports.”  I practiced for months on my bowling but forgot to do ping-pong—oops!  I created business cards with my info (name, team, type of transplant, e-mail address, etc.) and with plans to hand them out.

These are the pins I collected during the 2004 U.S. Transplant Games

I arrived to Minneapolis a bit of a novice.  I didn’t know anyone on my team except for the few I met at the uniform party in Tampa.  I figured winning a medal would be easy since my age group (18-29) had one of the smallest numbers of participants.  I forgot to consider the fact that many people had been to these games before me or they’d been in great physical shape even before their respective transplants.  Let’s just say I wound up learning a very humbling lesson. 

What was especially moving was that 2004 was the 50th anniversary of the very first (successful) organ transplant.  Dr. Joseph Murray (who performed said transplant--kidney) and Ronald Herrick (the living donor to his identical twin, Richard) spoke at, and were honored, at the Opening Ceremony.  Another highlight of the ceremony was watching the donor families enter the stadium with the donor quilts and hearing a donor mom speak.

Like I said in my previous post, it wasn’t until the games that I had any idea as to what my donor family had gone through at the time of their loved one’s death and their feelings in the transplant spectrum.  On the days leading up to (and on) my anniversary my family and I are joyous that I have survived another year post-transplant. For my donor family it is a somber occasion. Another year has gone by without their daughter who should be an adult.

Team Florida's sign: "We Will Rock You Like A Hurricane....And Yes We're On Steroids."  At the time, I wasn't a fan of the slogan but now I think it's hilarious.

While in Minneapolis, I finally attended the Lung Gathering I mentioned earlier.  I got to meet so many lung recipients (most of them due to Cystic Fibrosis) including my new friend, Ana, who I had met at the last games.  When I first saw her I waved but she looked at me funny, as if she didn’t know me.  I thought, why doesn’t she remember me?  While leaving, I saw Ana again but with another person. It eventually dawned on me that Ana is a twin!  That was my first encounter with the Stenzel twins and the one who looked at me funny wasn’t Ana at all but her (very identical) twin sister, Isa.  Over the years, I’ve gotten to know both women and admire them for their desire to live life to the fullest. 

It was almost immediately after these games that I took a big step towards independence: I got a full-time job.  Between the 2004 and 2006 games, I started working for the state.  I was making money, paying my parents rent, purchasing things on my own dime, traveling, etc.  Three months before I was supposed to leave for Louisville, Kentucky (the location for the 2006 games), I experienced something I never thought I would: chronic rejection in my lungs. 

For the first nine years and nine months post-transplant, I was the “ideal advertisement” for organ transplantation except for one little problem: I abused the “increased appetite” side affect from Prednisone.  I’m not flat-out saying that the chronic rejection was specifically due to my weight gain but I’d be very surprised if the extra weight I was carrying around didn’t play some part in the damage that had been done to my lungs.  

I was diagnosed with chronic rejection on March 21, 2006, the day before my youngest sister’s 18^th birthday. 

I had to go to the hospital the very next morning to start IV treatments of Solumedrol, receive a sudden increase in my Prednisone (from 5 mg daily to 40 mg daily), and a big change in my main anti-rejection medicines.  From Cyclosporine and Imuran to Prograf and Rapamune.   I became very swollen, very quickly.  My legs were shiny, I couldn’t move my ankles or wiggle my toes and I had to buy new shoes, pants and tops.  I went from having thick, dark, curly hair (that I was just starting to manage!) to having my hair become very thin and falling out in clumps.  As you might imagine, this change in my appearance had in affect in my experience at the 2006 U.S. Transplant Games (June 16-June 21) but I’ll get to that in a moment.

June, 2006: actor Larry Hagman and me.  You can tell how bloated I was at the time.

Two days after my 10 year anniversary, I arrived in Louisville, Kentucky swollen but excited at seeing my old friends and making new ones.  I had leftover business cards from the last games to distribute and decided to “tweak” my events.  I discarded bowling (I ended up in last place though I still think those lanes were rigged ;-)) and added track and field.  The 1500m race-walk to be specific.  Why? I’m still not sure but I figured that walking for a sporting event couldn’t be all that bad. 

While in The Bluegrass State, I slept more (due to the pain I experienced while walking on my puffed-up legs) and accidently missed the chance to compete in table tennis.  No joke!  I took a morning nap, walked up to the check-in table during the afternoon, and learned that I’d been disqualified because I wasn’t there for the preliminary trials earlier that day.  I don’t even think the term “oops” describes this big goof of mine.  At first I was angry but within moments, I was literally laughing off the moment.    

While the sporting events are fun, one of my favorite things about the games are those little moments that make these gatherings so memorable.  A conversation with a donor family, meeting someone who had the same doctor you once had, being reunited with a friend from previous games, cheering on a teammate.  During the 2006 games, I vividly recall becoming friendly with a donor family.  The mother and daughter had come all the way from Fairbanks, Alaska and felt bad that I still didn’t know my donor family.  So much so, that the mother practically adopted me as her recipient daughter!  Though we did not keep in touch, I hope to run into her again at future games.   

These are the pins I collected during the 2006 U.S. Transplant Games.  You can see Team FL, Team Rocky Mountain, Team New Mexico, and others.

The morning of Track & Field I awoke with a big knot in my stomach.  I’d never done something like this before and was scared at how I’d perform.  I was very tempted to chicken out but I plucked up the courage and walked out onto the field.  I was able to stretch and warm up before my age group had to compete.  As soon the gun went off, I started walking very fast.  Or at least, as fast as my swollen legs would take me.  Whenever I’d race-walk towards where the restroom was, I was extremely close to walking in that direction instead of finishing the race.  That’s how nervous I was!

But I didn’t change my route. I walked around that track like I was supposed to and since I was the last person in my age group to finish, I got the loudest cheers.  I’d forgotten one of the main themes of the games: you’re already a winner just by being there.  Surprisingly, I did win a medal—bronze!  Though technically by default, I won the bronze medal in the 1500m race-walk in the 18-29 age group for women.  I was floored and was so happy to win.  While winning a medal isn’t the end-all-be-all of these Olympic-type events, it’s still nice to receive the recognition.  

Swollen, acne-ridden me with my bronze medal.  If I ever meet my donor family, I'll give this to them.

The time between the 2006 U.S. Transplant Games and the 2008 U.S. Transplant Games (which would be held in Pittsburgh, Pennsylvania, July 11-16) was an era of highs and lows.  The highs were awesome but the lows were difficult for me.