Heart transplant recipient pushes for sarcoidosis awareness with documentary
TAMPA, Fla. - If it wasn't for a last-second diagnosis – and an urgent heart transplant – Steve Hilfiker wouldn't be here. He's now on a mission to help make sure other patients avoid the worst.
For Hilfiker, there were more warning signs than there were answers.
"They never gave me a diagnosis," he said. "They just said, well, some people just need... they didn't know."
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It was July 2020, and after six years of worsening fainting spells, the Fort Myers man was dying.
"I would be in my office, and I would have to hold on, or I'll fall down," Hilfiker said.
Doctors finally agreed he had cardiac sarcoidosis, and he was rushed in for a heart transplant.
"And then they got me up, and they got me walking, nailed it in physical therapy, the cardiac rehabilitation," Hilfiker said. "In 90 days after heart transplant, I climbed Sharp Top Mountain in Jasper, Georgia."
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But that wasn't enough for him.
Along with his filmmaker nephew, he has produced a documentary about sarcoidosis, the inflammation of vital organs, including the heart, that can lead to death, as it did for comedian Bernie Mac in 2008.
It impacts 200,000 people a year, but many don't know until it's too late.
"The process of diagnosing sarcoidosis is often a process of exclusion," Hilfiker said. "So look at everything else first. Consider sarcoidosis earlier in the process."
The most important lesson for patients, he said, is even after seeing a doctor, if something isn't right, push for answers.
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"If I was not such a strong and determined self advocate, I would be dead," Hilfiker said.
He believes he contracted the disease after being exposed to a certain type of pollen that exacerbated a genealogical condition he was born with.
Hilfiker said he often works out twice a day now and is loving life, especially with a 34-year-old's heart doing the work his couldn't.
Later this month, he is headed to France to show a short version of his documentary at the Cannes Film Festival.