Health
10:55 am
Wed May 15, 2013

Paso Robles Winemaker Battles Valley Fever

Winemaker Todd Schaefer has been battling valley fever for about ten years.
Credit Rebecca Plevin / Valley Public Radio

The quest for the perfect pinot noir lured Todd and Tammy Schaefer from Malibu to Paso Robles in 2001. But a different fate awaited them and their business, called Pacific Coast Vineyards.

“My wife and I had just come up here, to set up shop and continue our practice of winemaking, and, ‘Welcome to Paso Robles, here’s valley fever,’” Todd recounts.

In October of 2003, Todd was running a bulldozer through a vineyard, and kicking up lots of dust. They had no idea that dust would make him ill.

“There was nothing in the area to alarm us, or have us be aware that valley fever was an epidemic in this area, so we pursued our dream, and immediately Todd became infected with the spore,” Tammy says.

A few days later, Todd was very sick.

“The doctors said, ‘well, it looks like you have influenza. Eat some chicken soup, go home, no big deal,’” Todd remembers. “I figured they knew what they were talking about, right?”

His condition only got worse. A few weeks later, doctors took a lung biopsy, and sent it to a lab at UC Davis. When the results came back, the Schaefers learned that Todd had spinal fungal meningitis. Unlike most cases of valley fever, which stay in the lungs, Todd’s had spread to his spinal fluid. 

"Valley fever – what is this disease? It's horrible" - Todd Schaefer

“I’m a big strong guy, and it knocked me silly,” he said. “It knocked me flat out. I had no idea what was going on. Valley fever – what is this disease? It’s horrible.”

He was finally put on anti-fungal medication. But by that time, his health was wrecked beyond repair.

“It knocked me on my tail,” he said. “I couldn’t get out of bed for six to eight months. I didn’t dream I could get out of bed.”

Before Todd got sick, the couple had managed more than 20 vineyards in Malibu. He was a professional volleyball player for several years.

But almost ten years after he contracted the disease, Todd has a sliver of the energy he once had. Today, his health is contingent on a heavy regimen of harsh antifungal drugs.

“It’s a poison,” he says. “It’s as simple as that. It’s an anti-fungal poison. It doesn’t kill it, it just keeps it down to a low roar.”

But the drugs are hardly keeping him healthy. When he’s up for working, Todd has produced several award-winning wines. But most of the time, he’s just too tired.

“It feels like I’m handicapped,” he says. “I usually come in, get four or five hours of work in, and then I’m wiped out. I have to go home and take a nap, it’s as simple as that. It’s getting less and less possible for me to work.”

Beyond impacting their business, Tammy says the disease has completely changed her family’s life. 

"It limits everything you do on a daily basis" - Tammy Schaefer

“It limits everything you do on a daily basis,” Tammy says. “You become very fatigued, all the hospital bills and the hospital visits, and things like that. It becomes very detrimental to your family, but the biggest thing that valley fever would do with my husband, is shorten your life expectancy, so everything in your life and your future becomes more important on a daily basis.”

About a year ago, Todd suffered a small stroke. An infectious disease doctor at Stanford University said he’d developed hydrocephalus, or water on the brain. His doctors expect him to have more strokes and seizures in the future. He’s also losing his memory.

“I’m becoming more forgetful in my thoughts,” he says. “I find myself wandering up and down, in the house, I forget what I’m doing. I have to write things down all the time. My wife sees it clearly, my son does, too. It’s kind of unnerving. It’s a bit much for me.”

It could be even worse.

“My doctors at Stanford look at me - I have all the top neurologists and infectious disease doctors - and they say, ‘Todd, we don’t understand why or how you’re still alive. We don’t get it,’” he shares.

"My doctors at Stanford look at me and say... ‘Todd, we don't understand why or how you're still alive'" - Todd Schaefer

Todd doesn’t know the answer, either. But Tammy credits it to his drive to live.

“We think it’s the heart and the drive and the passion of everyday life to battle something that you had no reason, no way of knowing, that it was out there, or that it could ever effect you,” she says.

That passion was evident last Wednesday, as Todd walked through the facility where he makes his wine.

“Here’s our 2012 pinot,” he says, leaning against a large barrel.  “And we’re getting ready to bottle the ’11 this month and I’m really looking forward to this, because it smells and tastes so good.”

He’s also coaching his son’s high school volleyball team. He says it’s had a healing effect on him.

“That’s keeping me alive, to tell you the truth, it really is,” he says. “If I can’t coach anymore, that’s going to be a hit, right there.”

Todd hopes his experience sheds light on the need for greater awareness of valley fever, and earlier detection of the disease.

“I think if they had caught it early, they would not have allowed it to disseminate through my body, and eventually rest, set up shop in my brain and spinal cord,” he says. “That’s the killer right there.” 

Tammy agrees. 

“It has definitely changed our lives, because he was misdiagnosed for so long, that he had the worst case scenario of valley fever,” she says.

They hope that with increased awareness of valley fever, other families won’t suffer the way they have.

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