Pulses of hope: Downey foundation a lifeline for people living with heart issues

DOWNEY — It was December 31, 2022, and the TCU Horned Frogs were leading the Michigan Wolverines 21 to 6 heading into halftime at the Fiesta Bowl at State Farm Stadium in Glendale, Arizona.

But somewhere among the packed crowd of fans, Bryan Ball, of Tucson, Arizona, was no longer paying attention to the game.

“Right before halftime, I really had this massive, very debilitating pain in my chest, and I knew that wasn’t good,” said Bryan.

In reality, Bryan had had a heart attack and was “in pretty bad shape,” needing to be resuscitated around 90 times at an area hospital over the course of two days. He was ultimately stabilized enough to be able to be transported to Banner University Hospital, where he was put on full life support.

With doctors uncertain if he would ever wake up again, Bryan’s family was faced with a difficult choice between letting him go, or giving him another shot at life with a total mechanical heart: a prosthetic apparatus that would be inserted into his chest to maintain blood flow and act as a bridge until a real transplant could occur.

Dealing with a total mechanical heart would not be easy though.

“The hospital built up the artificial heart, that it was going to be so much work for the family; that not everyone is accepting of it, that we don’t know how he’s going to be when he wakes up,” said Emily Ball, Bryan’s daughter. “So, we were really scared that, if it’s not our dad that wakes up, then we don’t want him there. We’d rather him go peacefully than not be our dad anymore.”

That’s when Bryan’s family was put in touch with Unique Beating Hearts, a nonprofit organization that aid individuals with heart issues and their families, be it through emotional support, identifying resources, or providing information.

Through Unique Beating Hearts, Bryan’s family was able to speak with someone who had formerly had the artificial heart.

“It was just talking to him, hearing his story, hearing how they were able to cope with doing the artificial heart that we were like, ‘Okay, we can do this; we can pull this off,’” said Emily. “It was pretty much after he woke up being on the artificial heart that we were like, ‘Okay, we made the right decision.’

“He was just so relived that we made that decision, thankful that we made that decision regardless of what the future was going to look like.”

Bryan had a heart transplant on May 30, and “left the hospital for good” on June 23. He had his artificial heart for 144 days.

Unique Beating Hearts was co-founded by Downey’s former “man without a heart” Johnny Lemucchi, who after suffering a severe “widow maker” heart attack, was kept alive by a Total Artificial Heart for 203 days while he waited for a transplant. He founded the organization alongside Lance White, another former artificial heart patient of over two years.

“We realized that there was a need for not only the total artificial heart people, but people with heart issues,” said Lemucchi. “Every little issue with somebody’s heart is a scare, no matter how minor or how serious.

“We thought that between us and a group of people that we can put together, we could do something to really help society and spread the word.”

White said that Unique Beating Hearts was an endeavor to “give back.”

“A lot of people spent a lot of time with us, and we’re able to go ahead and receive our heart transplants,” said White. “But we also know how hard it was to go through the process, not only the physical, but the mental, the emotional, and the financial process.

“With that being said, we thought by having Unique Beating Hearts, we’d be able to talk to people, to facilitate that process. We kind of walk them off the ledge, say ‘It’s going to be okay. If you do x, y, and z, you’re going to have a smooth transition for what you need.’ That’s kind of our endeavor from now and forever.”

Much of Unique Beating Hearts work is steeped in education, traveling across the country and abroad to speak to physicians and patients alike, especially in regards to the total artificial heart. However, the organization is not limited to just that.

“Bypasses. Stents. If a doctor came to a patient and said, ‘You’re going to need stents’… They might put off that angiogram, because they don’t want that chance of having to come out with stents. That’s minor,” said Lemucchi. “When they hear our story and what we’ve gone through, that gives them that confidence, where ‘Heck, if they can do that, we can jump right in.’”

Richard Silva was told that he needed urgent quadruple bypass heart surgery. Over six months later and still waiting, he was put into contact with Lemucchi.

“We talked for a few hours. I got to know Johnny over the phone. He says, ‘Whenever you need anything, call me, I’ll be here for you,’” said Silva. “I would call him twice, three times a week. ‘Johnny, they postponed it again and again.’”

Feeling Silva’s frustration, Lemucchi reached out to Kaiser Sunset Hospital and was able to help Silva secure a date for his procedure.

“We had to push,” said Lemucchi.

Unique Beating Hearts is approaching its two-year anniversary. The organization – which is funded through donations – hopes to soon be able to help people with deductibles and other medical costs.

“Sometimes that can be a lot,” said Lemucchi. “If we can help supply that, just knowing that there’s people there for you. That’s our goal.”