Team Jill seeks kidney donor

Transplant recipient wants to pay it forward by helping local woman



TEAMING UP— Above, Simi Valley residents, from left, Evelyn Garfield, her husband Tony Falato, Jill Abele and her husband Ed team up to find a kidney donor for Jill at the Junkyard Cafe on Sept. 27. Jill has polycystic kidney disease, which is genetic. At right, Tony and Jill talk about the process of finding a donor and the importance of donor awareness for any organ.

TEAMING UP— Above, Simi Valley residents, from left, Evelyn Garfield, her husband Tony Falato, Jill Abele and her husband Ed team up to find a kidney donor for Jill at the Junkyard Cafe on Sept. 27. Jill has polycystic kidney disease, which is genetic. At right, Tony and Jill talk about the process of finding a donor and the importance of donor awareness for any organ.

It’s been three years since Tony Falato received the gift of life in the form of a new kidney. The Simi Valley resident was diagnosed with advanced renal failure in February 2015 at the age of 51 and suddenly found himself in dire need of a transplant.

To aid in Falato’s search for a kidney, Team Tony was formed shortly after the diagnosis by Deb Holler, a friend of his who is a member of the Rotary Club of Simi Valley Noontime. Within five months, fellow Rotarian Rocky Rhodes was deemed a match. Falato underwent a successful transplant in January 2016.

Falato, co-owner of the Junkyard Cafe, now seeks to pay it forward by helping Jill Abele, the wife of Ed Abele, a Rancho Simi Recreation and Park District director.

“There’s no blueprints when it comes to finding a kidney beyond doctors telling you to just find a kidney. So my wife, Evelyn Garfield, spent all this time researching and finding out what we needed to do,” Falato, 55, said.

He said that while there are donor registries out there, hospitals don’t offer patients much help in terms of finding a viable match or what the process entails.

Photos by DIANNE AVERY Acorn Newspapers

Photos by DIANNE AVERY Acorn Newspapers

“(Garfield and Holler) formed Team Tony and spearheaded the search for my kidney, and it was all done here in Simi. Because of that, I believe in my heart that we’re going to find Jill’s kidney right here.”

Jill Abele was 25 years old when she was diagnosed in 1990 with polycystic kidney disease, or PKD. It’s a genetic disorder that causes cysts to grow in or on the kidney, causing it to change shape or enlarge, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

It’s one of the most common genetic disorders and affects about 500,000 people in the United States, according to the institute. Abele, now 54, said she has a family history of PKD and has lost both her dad and sister to the disease.

“The challenge is there’s nothing you can do except live (while) knowing you’re going to have to confront this someday, not knowing when it’s going to strike,” she said. “And when you’re diagnosed, you don’t really feel any different. The decline just kind of happens over time.”

 

 

The reality of just how quick it can strike hit the Abeles in November 2018, when they received a call on Veterans Day that Jill’s sister had died unexpectedly at the age of 61. She was on dialysis for eight years and was waiting for a donor match—but she never found a viable kidney,

Jill said.

“It was quite a surprise (because) she was always so positive, upbeat, planning for the future and looking forward to just living life,” Jill said.

Ed Abele, 58, said that the week before her death, Jill’s sister was out waving signs for his RSRPD campaign.

“We didn’t realize (her sister’s death) was that imminent, and I think it was eye-opening and got us pursuing this (transplant),” he said, adding that his wife’s kidney functions have been on a more dramatic decline over the past two years.

Jill said her kidneys are functioning at about 15%.

“I didn’t realize how much (PKD) impacted me over the years because I just pushed through the pain and the exhaustion,” she said. “It’s debilitating, and it catches up to you over time.”

Though it’s been tough, Jill said, she’s been met with a ray of hope from Team Jill and the community as a whole.

The team—comprising Falato, Garfield, Rhodes, Debbie and Fred Thomas, Holler and Terry Marvin—mobilized in early September and has distributed fliers, created a hotline “seeking Jill’s superhero” and set up a Facebook page with that phrase as well as updates.

“Words can’t even describe how loved and supported I feel, and just that everything is going to be OK,” Jill said. “I’m confident that Team Jill is on top of everything and I can just focus on my health.”

Ed echoed his wife’s sentiments, especially when it comes to Team Jill and family, coworkers and longtime friends who have already offered to see if they’re a match.

“As painful and stressful as this whole situation has been, I feel so blessed,” he said, adding that finding a match isn’t as simple as someone saying they want to donate their kidney.

“It’s a long process. There’s a lot of steps involved, and someone could be ruled out at any point, even if they make it all the way to the end. That’s why I’ve been so touched.”

Since Falato’s successful transplant, he and Garfield said they always intended to pay it forward by being a source of information for anyone looking for a kidney—or for those who need help navigating the medical system. They’ve also gone to dialysis appointments with patients.

“Everything we did for Tony . . . all the things we had to learn, being stressed and lots of crying, I believe was all so we could help Jill and others,” Garfield said, recognizing Jill Abele’s positive attitude.

“We’re all in and we’re going to make sure this happens,” Falato said.

Anyone interested in being a donor can call the hotline at (805) 796-2840. Updates are available on Facebook. Search for Seeking Jill’s Superhero.