By Talal Elmasry

Alecia Cosey came to, slumped over in the driver’s seat, to find her 16-year-old daughter crying and gripping the steering wheel.

“Momma, are you OK?” Dayshai Cosey said. “Did your heart stop?”

All Alecia remembers from that drive to church on April 5, 2015, are the heart palpitations she felt before blacking out.

This was just one brush with death that Alecia dodged since 2002, when she was diagnosed with heart failure at just 25 years old. Alecia would go on to have an implanted defibrillator that saved her from at least two close calls, as well as two more implanted devices and a life-threatening case of sepsis, before finally getting a transplant to replace her struggling heart. She would make U.S. medical history along the way.

The revelation of Alecia’s heart failure hit her especially hard as the mother of a young child. And because it was the same hereditary condition that led to her father’s too - early death at age 36, she was convinced her heart had just as little time left as his had.

“Knowing that he had passed away so young, I honestly thought, ‘I only have 10 years of life left.’ I was going to die young,” Alecia said. “Who was going to take care of my daughter? She was just 5 at the time.”

Alecia believed it was her fate. Not only because she shared her late father’s condition, but also because her heart was barely functioning. She was eventually told it was only pumping out 10% of the amount of blood it was supposed to. Her debilitating symptoms, as well as feeling that she was destined to die young, would haunt Alecia for decades.

Overcoming heart failure would require three things: Alecia’s doggedness to achieve what no U.S. patient had before, boundless love from her family, and world-class care that offered revolutionary lifesaving devices and surgeries.

The navy and a new path
Alecia was born in Eustis, Florida, known for its small-town charm and lakeside attractions. The Orlando suburb, home to Lake Eustis, is a popular draw for fishing and boating, making it a natural launching pad for the next phase of Alecia’s life with the U.S. Navy, which she joined in 1995, then a fresh high school graduate.

“I absolutely loved being in the military,” said Alecia, who was based in Washington, D.C. “I was a hospital corpsman. I ran sick call and did other things as far as just assisting the doctors who were there.”

After serving for five years, Alecia returned to Eustis to assume a similar role in a hospital, while taking on a new one as a single mother.

“Being a divorcee at that particular time with a 5-year-old, I didn't think this was supposed to happen. I thought my future would be me and my (ex) husband living the American dream,” Alecia said. “I was on a new journey learning how to be a mother, and it was frightening because, of course, I didn't’t plan for this.”

She learned to juggle, and while doing so, created a permanent love of books with Dayshai.

“I loved reading to her at night,” Alecia said. “Actually, it’s so funny because now she is an avid reader.”

A sickly feeling in 2002 signaled the start of her health problems.

A checkup revealed that she had gallbladder disease and needed the organ removed. Recovering in the hospital, she went into ventricular tachycardia, or V-tach, a life-threatening heart arrhythmia that occurs when the lower chamber of the heart beats too fast and the body can’t get enough oxygenated blood.

Through cardiac testing, she was diagnosed with dilated cardiomyopathy. At the time, her ejection fraction — the percentage of blood the left ventricle pumps out with each beat — was dangerously low, at 25%.

With her troubled heart nearing a point of no return, Alecia needed another path. She found it by making a life-changing decision to move to Gainesville for her health care.

The devices that saved her life
Alecia's UF Health primary care physician, Carolyn Stalvey, MD, referred her to UF Health cardiology in 2005, and she soon became a patient of the UF Health Heart Failure Clinic under the care of cardiologist Mustafa Ahmed, MD.

Under his care, almost 10 years went by before Alecia, then 36, began experiencing heart arrhythmias so severe she needed a defibrillator.

In March 2014, she got the implant, whose purpose was to shock her heart back into regular rhythm if it went into V-tach again or ceased beating. Unfortunately, Alecia became familiar with the shock, which she described as feeling like a phone vibrating. She estimated it was triggered at least five times, including two terrifying moments.

The first was the blackout behind the wheel in 2015.

Dayshai, who had become Alecia’s primary caretaker, still holds the memory fresh in her mind.

“We were just chatting like we normally do on the way to church,” Dayshai said. “We were sitting at the light, and I noticed she was about to turn. As soon as she turned, she just passed out. It was the scariest thing.”

The second came a couple of years later when congestive heart failure sent Alecia to the hospital to remove fluid in her lungs and extremities. While addressing that, she had heart palpitations and passed out.

Regaining consciousness, Alecia realized she was the primary focus of a full-blown medical emergency. She remembers several people in the room, including a nurse leaning over, ready to shock her with paddles.

“Wait a minute!” Alecia yelled. “I’m here!”

In 2018, UF Health transplant cardiologist Juan Vilaro, MD, suggested that Alecia get a biventricular assist device, or biVAD, implant. The mechanical circulatory support device is designed to help patients with heart failure in both left and right ventricles. At the time, Alecia wasn't ready to take the leap and turned it down.

About a year later, her mom asked to go with her to an appointment with Dr. Ahmed and expressed concern about Alecia’s condition, which was getting worse. Fatigue made her out of breath before she could even reach the front entrance to work, despite being dropped off at the door. Unpredictable urinary incontinence from fluid buildup was another complication.

“Her energy levels changed, and she just be came more sick,” said her cousin Gina Hagins-White, who helped care for her.

Alecia left that appointment convinced she needed the biVAD implants. She spent two months in the hospital before the surgery, during which time she spent 10 to 12 days on an intra-aortic balloon pump, which helped circulate blood through her body.

“I prayed to the Lord. I said, ‘Listen, I need the A-Team for this surgery. I need Murdock. I need Faceman. I need Mr. T. I need all of them,’” Alecia said. “And lo and behold, I got the A-Team.”

On April 10, 2019, surgeons Mark Bleiweis, MD, Eric Jeng, MD, and their team rose to the occasion. The procedure would be the bridge she needed to a new heart, as the revolutionary device would give her time to lose enough weight and meet other medical benchmarks to get on the heart transplant waitlist.

She took a year off work to adjust to the biVAD and all the accessories, which caused some to jokingly call her “the bag lady.” Everywhere she went, she carried two external battery packs, tethered to her body through ports in her stomach.

“It was almost like I always wore two purses,” Alecia said. “So I would always get the lit tle joke from some people, you know, like a salesman in the mall who would say, ‘Oh well, you must have a lot of money because you have two purses on.’”

She returned to work at the VA, thanks to the biVAD. Alecia knew the extra bags were her ticket to the new heart she’d eventually need. But in January 2022, she received another crushing diagnosis.

A historic heart transplant
Just as her heart failure diagnosis drew perilous parallels with her father’s death, the news that she had sepsis brought back sad memories. Her younger sister had died from sepsis at age 29.

Dr. Vilaro told her that Dr. Jeng would need to remove the defibrillator because the sepsis was spreading on the lines leading from the implant to her heart.

“I asked, Lord, how much more can I go through?” Alecia said. “Dr. Vilaro explained it was a very intricate surgery because Dr. Jeng has to be very careful in removing it to make sure we don’t nick the heart muscle. Dr. Vilaro told me that he was praying for me while I was on the table. To hear your doctor say that, it’s heartfelt. It really, truly is.”

After the defibrillator was removed and with the sepsis no longer a threat, Alecia cleared her last obstacle by shedding the required 30 pounds to get on the transplant waitlist.

On Aug. 4 , 2022, after 52 days on the list, Dr. Ahmed called to deliver the six words that changed her life:

“We have a heart for you.”

While final tests were run, Alecia was told to have lunch and stick by her phone. A few hours later, she received a text she keeps in her phone to this day.

“It’s transplant time. Get to the hospital.”

A smiling, familiar face was waiting to receive her at the doors to the OR. Alecia went to fist bump Dr. Bleiweis, but he asked for a hug instead. He’d spend more than 10 hours giving Alecia her new heart. And 12 hours postoperation, a physical therapist came to roust her for a walk.

“You know how they rush in and want to get you up and want you to walk,” Alecia said. “Well, the PT snatched off my blankets, and I said, ‘Wait a minute, my bags!’ And she looked at me and said, ‘You don’t need them anymore.’”

That she could rely on the biVAD as long as she did is significant. Juan Aranda, MD, chief of the University of Florida Division of Cardiovascular Medicine, asked Alecia how long she had worn the biVAD. It had been three years and three months (1,212 days), making her the longest-living biVAD-to-heart transplant patient in the U.S.

And Alecia, diagnosed at age 25 and getting a new heart at 44, had finally overcome two decades of heart failure.

“Now that she has had this incredible journey, her body has finally caught up to that incredible spirit of hers,” Dr. Ahmed said.

Making that happen for someone who endured as much as Alecia did has a profound impact on her entire team of UF Health caregivers.

“I can tell you that it’s just so special and meaningful and why I do what I do,” Dr. Bleiweis said. “It’s just ... you can’t separate the science of it from that personal feeling you get when you can help someone like Alecia.”

Last year, Alecia had the honor of naming her granddaughter Kaiyomi, which means “beautiful” in Japanese. Kaiyomi was born at UF Health. Today, Dayshai can see her mom give Kaiyomi the same love she received as a child—the same love, but from a thriving heart.

“When you are having health challenges within your body, you have to have pitbull tenacity to want to live,” Alecia said. “If I had given up, how would I ever have known how blessed I would be?”

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