- Jose Leon developed worsening flu-like symptoms this spring, but tested negative for COVID.
- It took about a month for him to be diagnosed with Valley fever. By then, fungus covered his lungs.
Jose and Carmen Leon thought they could finally exhale.
The couple in Lemoore, California, had gotten through the worst of the COVID-19 pandemic with five kids at home, and survived Carmen's three-week hospitalization with the virus in late 2021.
They'd bought a house, and were ready for their next prosperous chapter of life. Then, in March 2022, Leon got sick.
"Finally when we feel like, OK, we're getting better, we're back on our feet, we're able to work and he got hit with this," Carmen, a receptionist at an ophthalmology office, told Insider.
"This" was Valley fever, a potentially deadly fungal infection that's been on the rise in recent years.
But Jose didn't get diagnosed until about a month after his symptoms began. All the while, his condition deteriorated, and he's still recovering today.
"Things would have been much better," he told Insider, "if I would have gotten diagnosed earlier."
Leon became so fatigued he couldn't care for his baby
Leon, a 40-year-old machine operator at a cheese factory, used to weigh about 200 pounds and work out almost every day. But this past spring, he started getting winded at the gym and found himself so fatigued he'd jog in place at work just to stay awake.
At home, he'd need to lie down. "And I hate laying down," said Jose, who worked nights and cared for the kids during the day.
A couple of weeks later, he developed a cough and body aches, then fevers and night sweats. But he was double-vaccinated against COVID, and tests continued to come back negative.
At one point, Jose felt so sick he called his oldest daughter home from high school to watch her 1-year-old sister. "That was one of the signs for me," said Carmen, who was working at the time. "I was like, 'Something is really wrong' because he's never not been able to" take care of the baby.
At a local clinic, the doctor told Jose she suspected Valley fever, but Jose's primary care doctor didn't take her recommendation to test Jose for it. Instead, the doctor conducted chest X-rays, which looked so damaged Jose was instructed to go straight to the emergency room.
But even there, clinicians thought it was a bad case of COVID. Carmen said they sent him home with medications including steroids to take for a week, but Jose wasn't getting better.
"He stopped wanting to get out of bed, he didn't want to eat," Carmen said. So she took him to the emergency room again, where he was eventually diagnosed with Valley fever. The infectious disease doctor raised the urgency of his case from a 7 (not so bad) to a 1 (very bad), Carmen said.
"At this point, his lungs were full-blown white, they were full-blown pneumonia, up into his throat," Carmen said.
As someone who grew up in the Valley and had been told he had some immunity against the infection, Jose couldn't believe his diagnosis. "I was in shock," he said. By then, he said, he'd lost about 50 pounds.
Jose may be on antifungal pills for life
Jose was treated with amphotericin B, a strong IV antifungal medication. He stayed in the hospital through the end of July to receive injections because his insurance wouldn't cover them in outpatient care.
Over the summer months, Carmen cut back to part-time work, rotating between home with the kids and the hospital with Jose. "It was very difficult," she said. "At times, we had no money coming in." Carmen's sister started a GoFundMe account to help with medical costs.
Jose also missed his eldest's high-school graduation and his youngest's first words. "For four months, he was out of the house, which is not normal for us," Carmen said. "I know it sounds sappy, but we're always with our children, we're always with each other."
Now, Jose is home, but far from back to normal. He takes an oral antifungal medication daily that he may be on for life, and can't return to work until 2023 at the earliest. "I feel way better," he said, but that's relative: Now, Jose said, "I feel like I'm waking up with the flu every day." He's also constantly constipated and has an altered sense of smell and taste.
When Carmen asked the doctor if there was anything else the the family could do to support Jose's recovery, she said, "move out of California." "That's not an option for us," Carmen said.
Most people who inhale the fungus that causes Valley fever don't get sick
Valley fever, or Coccidioidomycosis, is an infection caused by inhaling spores of Coccidioides fungus, which is found in soil.
Not everyone who inhales the spores will get sick, but about 40% of those who do develop flu-like symptoms, Insider's Gabby Landsverk previously reported. Around 1 in 10 patients can have serious side effects, like permanent lung damage. Rarely, people with Valley fever die if the infection spreads to places like the skin, joints, or spinal cord.
It's not contagious, but the spores have been increasingly found in unexpected areas, like Washington and Oregon, likely due to climate change.
Jose said he wants people to be aware of Valley fever as a potential cause of flu-like symptoms. "People need to know that it's out there and test for it," he said. "Make sure you catch it early, because the fungus grows."