Joe Rivera is desperate to live — for his family and himself.
The 61-year-old Oro Valley man needs a kidney transplant, but first, he has the daunting task of finding a donor.
“I’ve been a giver my whole life,” said Rivera, whose blood type is O positive. “It’s really difficult. It’s not like I’m asking for a $100 donation.”
Rivera has polycystic kidney disease, an inherited disorder in which clusters of cysts develop primarily within the kidneys, causing the kidneys to enlarge and lose function over time.
“My dad had a kidney transplant (from a deceased person) 17 years ago,” he said. “All of his kids have polycystic kidney disease. I’ve been watching it, but over the last year and a half, my kidney started to deteriorate at a faster level. The disease is spreading quickly.”
His wife, Keri, has been tested but is unable to donate. Their four children tested positive for polycystic kidney disease, so they have been eliminated. Rivera wants to get the word out in the hopes of finding a living donor and spreading the word on the importance of donor programs.
“In the back of my mind, I knew, based on family history that I would need a transplant,” he said. “It just seems sooner than imagined.”
Rivera — a U.S. Navy veteran who is a vice president at Gulfstream — may have to start dialysis at some point. To try to stay healthy, he walks a couple of miles four times a week. However, it leaves him “very fatigued, and that’s the biggest issue right now.”
“They have me watching for loss of appetite and nausea,” he said. “Once I get that, I have to go on dialysis.”
Rivera is a patient at the Mayo Clinic, where he sees a “phenomenal” nephrologist who helped him be added to the kidney transplant list.
“I had no idea how difficult it is,” he said. “You don’t think about the process of being able to get on the transplant list as being so hard.”
Gulfstream has been understanding, he said. Responsible for service centers around the world, Rivera works remotely.
“That’s been a saving grace,” he said. “I’m on travel restrictions now. Being on the transplant list, I have to be within eight hours of the Mayo Clinic. Plus, they don’t want me traveling on airlines with COVID or flu and everything that’s going around.”
Rivera said the search for a kidney has been a learning experience; he’s impressed with the National Kidney Foundation.
“There’s a supply and demand issue,” he said.
“The National Kidney Foundation assigned me a coach and the coach has been amazingly helpful. He’s a gentleman out of Texas who went through a kidney transplant. He’s helped me come out of my shell and come up with fliers. My kids are helping me with social media.”
Disseminating fliers comes with its own set of challenges. He generally gets a negative reaction.
“It’s society in general and what’s going on,” he said. “There’s such a lack of trust. You try to engage with somebody, and they don’t want to take it or they think you’re asking for money. I can see it by the reaction in their face.
“My goal is to pass out 25 fliers a day. One day, two people stopped to read it and they realized it was me. My coach called me. I said I was having a bad day because I couldn’t believe people’s reactions. He said, ‘You got two people to talk to you. That’s fantastic.’ I was focusing on the 23 who didn’t talk to me. It’s changed my view. It’s the little wins that count.”
Rivera is inspired by his father, who takes his medication religiously. On average, kidneys from a living donor last longer than those from a deceased donor.
“Knowing his kidney is now 17 years in, it really showed me that if someone is deceased and they give up their organ, that is so special to the family. I should respect that and honor that.
“If someone is going to donate an organ to me, especially as a living donor, I feel obligated to live the rest of my life taking care of that kidney. I know I want to take care of something that as precious as what they’re giving me.”
Joe Rivera’s needs
For more information about Joe Rivera’s need for a kidney, visit https://bit.ly/JoeRivera
This article appears in Jan 18-25, 2024.