My Two Favorite Dorks

My Two Favorite Dorks

Thursday, July 21, 2016

Transplant Games, Cleveland Ohio (June 10-15) Part II

I told you in part I about the 5K, the Opening Ceremony, my poker playing experience as well as a couple of awesome workshops I attended. That puts us up to Tuesday...
Pinwheels were placed all along the lawn across from the convention center. They were marvelous! Lake Erie barely making an appearance in the background.


My second event to compete in was group trivia. I did not know that I was supposed to come as a team with my state group so I ended up being placed with a bunch of random people who were fun to play with. Our team consisted of an older heart transplant man, an intestinal transplant woman my age (!), a cool vegan hippy kidney transplant guy from southern California, a liver transplant man who was the only living man with some crazy liver disorder, his brother (possible liver donor?), and me, a double lung transplant. We were quite the diverse group! Anyway, we didn't do great, but we did okay, and we had fun coming up with some of the answers.

Our trivia score sheet

After trivia was done, I wandered around and ended up meeting a couple of amazing women: a mother (liver recipient), her daughter (her living donor) and her daughter's friend. I ended up talking mostly to the friend, who told me the story of the daughter's donation and what a mess it had been, a story I'm not sure the daughter herself would have shared.

First of all, the initial surgery had gone great, both mom and daughter did fine. Subsequently, the daughter's incision had gotten infected with MRSA while in the hospital in Upstate New York. She ended up being in the hospital for months. The scar wouldn't heal for a year. Her abdominal muscles had nowhere to reattach since the fascia wasn't healed. She had a long series of hernias, something like ten surgeries over the last ten years. Finally, she came to Cleveland Clinic last year and things are looking up. What an ordeal! (Apparently I'm not the only one who thought she has an incredible story - she was going to be interviewed by NPR's Story Corps later that day.) The crazy thing is that she doesn't seem to have any hard feelings or regrets. Wow! 

The Lung Gathering 

I'd actually been really looking forward to a special gathering Tuesday afternoon for lung transplant recipients. It turned out to be a bit disappointing. First of all, I hate things that are disorganized. It was well after 4, when we were supposed to meet, and the woman in charge and her friends had set up a table for us to sign in and other than that, it was total chaos. She had been assigned a cubby hole area for the meeting but there were no chairs there while outside the area, about ten feet away, were about 500 chairs that no one was using.

Me getting pecked in the head by the Transplant Games mascot

Trying to be outgoing, I stepped up to get a name tag and then tried to mingle. It was weird; I had expected a lot of CF-people to be there. But there weren't! At least not the typical CF-looking ones. (I don't mean that in an offensive way, I mostly fit the criteria for that, too.) It was a bunch of normal-ish looking people young and old. I did meet an older biker dude from Missoula, Montana who has ridden 500,000 miles across the country since his transplant. Amazing! I chatted more with a man who'd been sitting at my trivia table earlier. He was a really cool guy, double lung transplant. The one person there who I "knew" and had wanted to introduce myself to and chat with was Isabel Stenzel Byrnes (aka Isa Stenzel) but she came late and had to leave early. Overall, I noticed - both at the gathering and at the Games in general - that there seemed to be more people starting to live longer with lung transplants. Several people had gone 10-15 years. I guess that is encouraging, but the statistics are still really scary. Thank goodness I don't believe in them! 

Closing Ceremony

Wednesday, the last day, was a free day for me except for the Closing Ceremony in the evening. Before the closing ceremony, our team met at a pizza place not far from Fourth Street to enjoy some fellowship. One of my teammates, Robin, and her husband had bought a bunch of fun stuff like crowns, princess tiaras and glow jewelry at the Dollar Store which we decorated with Sharpies and donned for the closing ceremony after we ate.

Team North Carolina, in our ugly orange shirts, before the closing ceremony

Turned out there wasn't much of an official closing ceremony - everything was very informal, people were milling around with drinks, music was performed in the background, there were food trucks. My teammate Robin had won the singing competition and was selected to be one of two individual singers to perform! But there wasn't much organized activity. (I had been eagerly waiting for the announcement of the location of the next Games, but that never came.)

Mary Ann and I sat for a bit, wandered around looking for ice cream, I picked up my last pin (the highly coveted frog from Puerto Rico!) By the end of the night, Mary Ann and I ended up eating an ice cream bar, a gourmet "tiny doughnut" and the best gelato I've had in my life (chocolate sea salt). 

Overall Thoughts and Impressions

I think that the Transplant Games is something that every transplant patient should experience at least once in their post-transplant lifetime. A lot of the closeness, kindness and kinship that I felt is hard to put into words. I guess it's kind of like when I first discovered the online CF forums almost 15 years ago - like I was coming home to this place of understanding that I didn't know existed: I had found my people, my tribe! I would not be like I am today without them.

The amount of love, support, listening and learning that takes place both in the CF and now in lung transplant communities have been such an important part of my ability to deal with everything I've been through. These friends can be completely honest without having any sort of agenda. They can take a lost you and help you find yourself again. It's different than support from friends and family, your doctors encouraging you to be diligent and exercise. They're folks who know the exact way to pick you up when you're down because they have been through it themselves and have figured a way out. 

The other thing is, I'm pretty sure I met a few people at the Games who meet the definition of what it means to "beat the odds." You wouldn't believe the stories...transplanted at the last minute, having been through ungodly side effects, never having been expected to make it. But they did. They did make it. And honestly, that's why I don't put so much value into statistics anymore. You only know as much as what's possible for one human being to accomplish.

So I will leave you with that. I fully intend to go to the Transplant Games next time (they are held every two years.) I still await anxiously to know where they will be held (please, universe, someplace awesome!) In fact, my friend Jess is heading up our 2018 team, and I am going to be her right hand woman, so I'm expecting a much smoother, fun and organized time of it. There's so much to look forward to! I may even try to do some "real sports" next time. :)

 This Is Important!!

Please consider helping all of the amazing people like me who are depending on life-saving organs by becoming an organ, eye and tissue donor today. It doesn't matter how old or imperfect your health is - one person can save as many as 8 lives and enhance as many as 50.
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