Carolyn and James Vigil. | Courtesy photo
(CNN) — Carolyn Vigil was lying in bed next to her husband when she first saw the meme. It noted West Virginia had no reported cases of coronavirus, and jokingly pleaded for its people to hang on.
She remembers it so well because it’s the day her husband James began to feel sick in their Shepherdstown home in the West Virginia panhandle.
Her husband was sick from Covid-19. But her “coronavirus-free” state wasn’t set up to test him.
He would become the state’s Patient #1. They didn’t know it then, of course, nor did anyone else. But in the following days they felt like that they were the only people in the state who wanted to find out. From medical professionals who simply had no information to health administrators in the same boat, all the way up to the President saying the state was doing a good job for having no cases.
And all the while, Patient #1 — James Vigil — was there for the testing.
That evening, James had gone straight to bed when he’d gotten home from work. He’d had a bad headache, his sinuses bothering him and achy.
Carolyn heard him wheeze, and while she knew he had asthma, it hadn’t been an issue in a long time.
“I reached over and he was hot, I mean hot to the touch,” Carolyn tells CNN. “I took his temperature and it was 104.”
That’s when she knew something wasn’t right, and likely the memes about West Virginia not having coronavirus — as all the other states began to record cases — weren’t either.
“I’m pretty sure the guy I’m lying next to has it,” she remembers thinking.
That night would begin a wife’s quest to find out if her husband James, 53, had coronavirus. CNN could not verify the full account due to privacy laws that prevent health officials from disclosing details about patients.
Carolyn’s journey is one story behind how and why West Virginia had no reported cases for so long.
The quest for a test
There are two things to know about Carolyn Vigil to understand how she went about her mission: She was once a statistician, and she’s spent years getting care for one of her sons, who is disabled. She’s persistent and experienced at whacking through health care red tape and confusion.
Her statistician brain kicked in early in March when she watched the number of purportedly coronavirus-free states dwindle to just a few, then narrow to just her home state.
“Any time there’s an anomaly, I think, ‘There’s a reason for that,’” she says. “What’s the hidden story? Why are there no cases? Is it underreporting? Is it testing?”
It made no sense to her for West Virginia — with its health and wealth gaps, plus its high rate of smokers — to be impervious to a virus that hits the respiratory system.
But it was a fleeting thought until there was James, wheezing, and his high temperature, climbing. Carolyn gave him medicine for his fever and tried to keep him hydrated.
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Then she went online to research coronavirus resources and testing information so she could be armed the next morning when she would call to get James care. The first hotline she called using a number from an official notification didn’t work. Her second call was to the state’s health department.
Carolyn answered a series of triage questions, including about coughs and a fever. She answered yes to them all and was told James should probably be screened and that Carolyn should call their doctor.
The doctor’s receptionist told her “you absolutely cannot come here.” And she was given a hotline number. The same number she had called for the state health department that had sent her to call their doctor. It was her first dead end.
A friend suggested they go to the emergency room, and Carolyn loaded James into the car.
Aware that James could be contagious — and she could be, too — Carolyn left him in the car as she walked in.
She kept her distance from staff as she asked for help.
“The receptionist said, ‘You know, I don’t think we’re equipped to handle this,’” Carolyn recalls.
She insisted that her husband needed medical care, so the receptionist went to get a nurse.
“The nurse came out with a 1-800 number on a sticky note and said, ‘We can’t screen you or your husband. We can’t treat you. You need to call this hotline number,’” Carolyn says.
“And I was like, no, that was the original number. I’m not starting there again.”
It was another dead end, and Carolyn began to realize perhaps there wasn’t a proper plan in place in West Virginia.
“We were, like, on the frontier of working through it,” Carolyn explains.
“The hotline number, I think it was maybe the only thing they’d ironed out in the protocols at this point,” she says. “I don’t think they had a process established for what if we have a high-risk candidate, how are they going to get tested?”
Carolyn refused to leave the emergency room. She was acutely aware not only of James’ current symptoms but also his asthma and the fact that he has a compromised lung from a snowboarding accident.
“I said, ‘I’m going to stand here in your lobby until someone of authority can get him help or tell me where to get help for him,’” Carolyn recalls.
Security guards came, she says, but eventually, so did the head nurse. She agreed to talk to Carolyn, but only in the parking lot in case Carolyn was also contagious.
“She was kind of trying to direct me to the 800 number as well. And I said, ‘Can you just look at him through the rolled-up window? He’s right over there in the car. I want you to see how sick he is because I think if you see how sick he is, you’re not going to turn us away,’” Carolyn says.
After asking many of the same triage questions, the senior nurse agreed James should be examined. He was taken in through a back entrance and put in a special room.
The doctor wanted to rule everything else out and tested for a variety of conditions, all of which come back negative. Finally, they swabbed for Covid-19.
The Vigils were told to go home and quarantine themselves for five days to wait for the results.
Still no answers
James and Carolyn hunkered down. Four days after the test, West Virginia was still reporting no confirmed coronavirus cases, though Carolyn felt that was not accurate.
That night, she woke in the early hours. She felt hot, touched her face and then checked her temperature. Now she had a fever.
The next day, they expected to get the test results, only they never got a call. When it hit midafternoon, she contacted the ER. She was told to call the state lab. According to Carolyn, they said to call the county health department. The county health department told her something that hit her in the gut: They had no record of James being tested.
Carolyn reeled off the details of exactly when he was tested, where and by whom. But still she was told there was no record and to try the state health department again.
“I’m exasperated, and I decided I’m going to call the governor’s office,” Carolyn says.
They got a caseworker who listened and was courteous, but there were no answers.
When the phone did ring, it was the hospital saying James’ tests had been lost and he had to get tested again. But they didn’t want him back at the hospital, promising instead to find a location and call her back.
James’ lungs were getting worse, Carolyn says, “and we’re back to square one.”
Carolyn decided they should just drive to Virginia. That state had recorded coronavirus cases, so surely there was a better system in place. As she called around to see what she needed, she got a call back from the West Virginia state lab: They had found James’ samples.
But they’ve been sitting in the lab for days, Carolyn was told. “They’re no longer viable,” she recalls hearing. “You have to get tested again.”
Tears began streaming down her face. She had no answer and no clear path forward.
Carolyn had been documenting the issues on Facebook. As she posted the latest update to their saga, a friend reached out with a connection to US Sen. Joe Manchin and said someone from his office would call her. The call came, says Carolyn, who shared all her information and got a promise that they’d get to the bottom of it that day.
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Carolyn wasn’t so sure. She’d heard this before and told them bluntly: “I have so little faith in getting this resolved. All I really want at this point is a doctor’s order so I can take him across state lines to get tested.”
The senator’s staffer asked for Carolyn to give them one day. She agreed. But just one.
Frustration fuels paranoia
The toll on Carolyn’s mind is hard to explain. She was beginning to feel a little paranoid, she admits, and her trust in the system was shaken.
As she struggled to understand what was taking so long, she turned on the TV, and there was President Donald Trump holding a briefing and talking about her state leader, Gov. Jim Justice.
“I’m in the middle of all this and President Trump was giving a press conference complimenting ‘big Jim’ on how well he’s managing the health care in West Virginia and managing the Covid process. And I was like, you have got to be kidding me,” Carolyn explains.
“It was just all starting to feel surreal,” she adds.
Justice had closed the schools and declared a state of emergency, but because zero cases had been reported, Carolyn says people in the area were acting like there was no pandemic.
The state began posting updates on March 7 about coronavirus tests. By the time James was tested, 31 coronavirus tests had been performed in the state, all of which were negative or pending results.
“There’s a lot of people that were not taking any of this quarantining seriously because there were zero cases, right?” Carolyn says. “We had so many friends just say, ‘We’re going to bars, it’s St. Patrick’s Day, you know, let’s go to dinner.’”
Then the office of the state’s top health official called. They asked a lot of questions and promised a quick return call.
That call back stunned Carolyn. They told her they had the test results: James had coronavirus.
It was what Carolyn suspected. And now it was confirmed.
Carolyn was told what she should do and how the state was working on a news release for the governor. There would be an announcement within the hour that West Virginia now had a case of coronavirus. The first case in the last state in the land to report one.
The West Virginia department of health says James’ test was misplaced by a shipping company. They say James was tested a second time. Carolyn says he was not.
Whether James was the first case or whether he was just the first to be confirmed amid testing issues is no longer top of mind for the Vigils. They just want things to be easier for the next patients.
And for Carolyn, it has been. She managed to get tested at a drive-through site on Wednesday. And two days later she was called with the result.
She’s positive, too.
Neither Carolyn nor James is well right now. Carolyn is weak, and James had to return to the ER for asthma-related complications, she says.
But her spirit at least has been lifted by the massive change she witnessed between James’ test and her own.
And perhaps coincidentally, the out-of-service number she says was promoted by the state and that she first tried has not been included on updated news releases. It has been replaced by a website.
“Within one week’s time, testing became more accessible. Drive-through tents have been set up in hotspot regions. The state is closely monitoring now and has a communication strategy in place for results,” she says.
“I feel like all this was worth it.”