His wife died by suicide after a 13-month battle with long-haul Covid. He hopes help is on the way for others

(CNN) — Filmmaker Nick Guthe says in the months before his wife, Heidi Ferrer, died by suicide, she suffered debilitating long-haul Covid symptoms.

It started last summer, with “excruciating, unexplained” pain in her feet, Guthe told CNN’s Alisyn Camerota on Wednesday.

Digestive problems followed. She suffered body aches and her heart would race every time she got out of bed. And several weeks before her death last month, neurological tremors began that wouldn’t let her sleep for more than an hour at a time, Guthe said.

They tried to get answers, but doctors pointed to other causes instead, none which seemed to fit with what Ferrer was experiencing, Guthe told CNN.

It took months to get more advanced and accurate testing that eventually led Ferrer to be referred to a long-haul Covid clinic. The referral letter for that facility arrived a day before she died, her husband said.

“That’s how hard it is to get people to pay attention to people with long-haul Covid,” he said.

Ferrer was one of what some experts say could be millions of “long haulers” — people who have faced lingering symptoms after a bout with Covid-19. National Institutes of Health Director Dr. Francis Collins said earlier this year preliminary research found about 10 to 30% of people who had Covid-19 may develop long-term health issues.

There are potentially hundreds of symptoms, including fatigue, shortness of breath, sleep disorders, anxiety, fevers and gastrointestinal symptoms — all of which can last for months, and “can range from mild to incapacitating,” Collins wrote in February, when he announced an initiative to identify the cause, prevention, and treatments for the post-Covid condition.

For now, almost everything about it remains a mystery: There’s no diagnostic test, no specific treatment and doctors can’t predict who will have symptoms and what they will be.

‘Just hang on’

Guthe said his wife got the Covid-19 vaccine in March, after hearing from other long haulers that it helped improve some of their symptoms. But in her case, Guthe said, it didn’t help.

Neurological tremors continued to keep her up at night and in the last month of her life, Guthe said she had brain fog that made even reading a book “almost impossible.”

“She had indicated that if things got really bad she didn’t know how she could continue, she didn’t know how she could keep going, and I just kept saying, you know, ‘Just hang on, you know, hang on, medical science is moving at the quickest rate it ever has,'” Guthe said.

“But I think she just felt that she was only going to diminish, she was going to lose the ability to walk, end up in a wheelchair, not be able to bathe herself,” he said.

On Wednesday, Guthe said he had the same message for others who are facing what his wife did: Hang on.

“I believe that help is on the way, but we need our government to step in now and fund research right away and provide mental health support services for people like her,” he said.

“We need to pay attention, and it’s not just about suicide. It’s about people re-entering the workforce. This is an economic issue. We have trained people… who are not going to be able to go back to their jobs because they are exhausted, they are bedridden.”

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