Published May 1st, 2014
GAINESVILLE, Fla. -- Imagine spending almost a year of your life in intensive care at a time when you should be worried about school, hanging out with friends, and getting your driver's license.
That was reality for one 16-year-old patient at UF Health, fighting time and a failed transplant as she waits for a new heart Now 17-year-old Nalexia "Lexi" Henderson was clinging to life in the emergency room last year.
But for the first time in more than 11 months, she's now waiting for a transplant somewhere else.
Trouble began for Lexi in May of 2013 when she was admitted to UF Health in severe heart failure.
"When we got here it was crazy," Lexi says,"as soon as we got back to the PICU, I just went downhill."
Her transplanted heart she received in 2007 was failing and no longer pumping enough blood to her organs. Her body was shuting down.
"Things became emergent," Dr. Mark Bleiweis, Lexi's doctor and the director of the Congenital Heart Center, explains, "We discovered that she was chronically rejecting the heart and had coronary artery disease in the transplanted heart."
Doctor Bleiweis decided Lexi needed an artificial heart to recover enough to eventually be able to undergo a heart transplant.
"We knew that was the only thing that would keep her alive," he says.
Surgeons at the UF Health Congenital Heart Center implanted a SynCardia temporary total artificial heart. UF Health Shands Hospital is the first and only SynCardia-certified center in the state; Lexi, their first patient.
Originally, the SynCardia heart was hooked up to an external machine known as "Big Blue." It did the job, but weighing in at over 400 pounds and about the size of a washing machine, it wasn't exactly mobile. So in December doctors switched Lexi over to the Freedom Portable Driver: a wearable pump weighing just about 13 pounds.
Lexi is the youngest patient in the world to use the SynCardia with the Freedom Portable Driver. It was only available through the FDA as an investigational device exemption clinical study in the US.
"I'm really praying for a heart, but until a heart gets here, the SynCardia is doing it's job," Laurette Ash, Lexi's mother, says.
Much smaller than its blue counterpart, the freedom driver is living up to its name, giving Lexi the ability to move around. For the past several months while she continues to recover, Lexi, her family, and her caretakers have learned how to use the device - and prepare for a departure from the PICU.
On a Friday afternoon in April Lexi finally left the PICU after more than 300 days in the hospital.
Lexi is now the youngest patient to be discharged from the hospital using the SynCardia heart and freedom driver, just in time to celebrate her 17th birthday.
When asked how it feels to leave the hospital, Lexi replies, "it's just been a journey."
A journey of hope and healing, now a journey home.
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