July 28, 1 p.m.
Some of us literally poured blood, sweat, and tears to be there laughing. Transplant recipients, like me.
Others thought they’d never see their loved ones laugh again, much less years later. Caregivers.
Others doubted they’d ever laugh again after they lost the one. The one whose organs now power the body of a person who once was actively dying. And now they live. Donor families.
It’s the Team Northern California (NorCal) kick-off picnic to celebrate the Transplant Games of America’s Salt Lake City opening next week. Dozens of people have made it out for the event, as NorCal is home to two major transplant centers: Stanford University and University of California, San Francisco (UCSF).
I made some fascinating new friends at my picnic table:
- A fellow UCSF double-lung transplantee. She has cystic fibrosis (CF) and had Mycobacterium abscessus, just like me.
- A double-lung transplantee who is successfully keeping chronic organ rejection at bay — she’s never stopped fighting.
- Isabel, a double-lung transplantee who has CF and co-wrote the memoir, “The Power of Two.” When I was 16, she gave a speech at my hospital in Hawaii. Her story was the first positive testimony of transplant I’d heard, and she’s a big part of the reason I considered getting the surgery seven years later.
- Kathleen, a heart-lung transplantee and a caregiver to me.
- A woman who received the healthy heart of a person with CF, who in turn got a heart-lung transplant. A domino transplant — how cool is that?
- The mother of an organ donor. I am honored to be in her presence.
I am honored to be in the presence of all who sit at the table. Warriors.
July 28, 4 p.m.
Kathleen and I hit the birdie, also called a shuttlecock, to my immature amusement. Back and forth, back and forth, back and forth. Badminton. We’re a duo for the sport at the Transplant Games. For now, we’re still learning the rules. But man, can we hustle, darting across the court repeatedly for two and a half hours. We have big blisters on our toes, we’re running so hard. Once upon a time, we needed wheelchairs and supplemental oxygen. We couldn’t get out of bed. Now we’re training to compete.
In a Facebook post, I wrote, “We are … dare I say? Pretty athletic now.”
“Bradminton” and “Shuttlecock Sheffer” (she prefers “Short-Serve Sheffer”) likely won’t win at the Transplant Games this year. But watch us dominate next time. We’re only getting stronger.
July 30 – Aug. 1
Kathleen and I charged through thick California wildfire smoke and past the gambling Sirens of Nevada to reach Salt Lake City for the Transplant Games, along with Mary (heart transplantee) and Mari (“interested in transplant stories”), in a hulky, white Chevrolet Tahoe SUV.
Mari later posted on Facebook that she has renewed gratitude for her life after listening to her three transplanted friends discuss their trials and blessings.
While walking in a Salt Lake City neighborhood at 4,460-foot elevation, Kathleen stepped on a snake. She screamed and ran while I kicked the snake in the face. She’d tell you I was the one running and screaming, but who do you trust more?
I’m in the bustling conference center hall that hosts the Transplant Games. In 2002, the city hosted the Winter Olympics. I’d say the new competitors in town have worked just as hard as Olympic athletes to be where they are today. There are hundreds of donor family members, caregivers, and recipients — from places like the U.S., Brazil, India, and Australia. Recipients are here to show off our newfound health and have fun while we’re at it.
I’m laughing with a fellow CF transplantee. It’s fitting that so many CF patients are meeting at Salt Lake City — one of the classic CF symptoms is salty skin. The conference center is called “The Salt Palace.” I haven’t met many others with CF. That’s a privilege afforded by transplant, thanks to cross-infection risks that eliminate the possibility for pre-transplant CF folk.
Yes, we’re laughing. And we also cry together, in the middle of that busy conference hall, while recalling how depressed we were in the first weeks following our transplants. We aren’t only sad. Our tears carry gratitude for having survived that dark, dark pit.
On the back of my ID tag, there are rules for the Transplant Games.
“Rule 7: Remember that each day is a gift and strive to bring happiness to myself and those around me.”
I talk with a donor family member, and she asks me how I’m doing.
“Honestly, this is the best period of my life. I could die tomorrow and be com – ”
She finishes my sentence: “Completely happy. That’s what all the recipients here have told me.”
There’s so much laughing in that conference hall.
The Transplant Games officially begin the day after I’ve written this. Join me on my adventures through my Facebook Page.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.