Patients recount fears, frustrations
“I REALLY FELT LIKE I WAS GOING TO SUFFOCATE”
On Saturday, Michael Sullivan marked his 77th birthday alone in a second-floor ICU bed at St. Anthony Hospital in Lakewood. He’s had a cough for a little more than three weeks. He was, at f irst, not too concerned, but to be safe he scheduled a video call with a doctor, who prescribed cough medicine. That didn’t work, so they had another call March 24, and this time the doctor urged him to go to the ER.
At St. Anthony, staff members tested Sullivan for the new coronavirus. They isolated him in a room and, even though his test result had not yet come back, they started to treat him as if he were positive for the virus.
Interviews with Sullivan and other Coloradans who either have or are related to someone with the coronavirus revealed one common denominator: uncertainty. Uncertainty about how they became infected, about who can get tested and when, about how long to stay in isolation and about whether they will be protected from reinfection.
“I thought, ‘What the hell’s going on with me here?’ ” said Sullivan, who’s otherwise quite healthy — he plays in an ice hockey league with men half his age — and has no underlying medical issues.
On March 25, he was sent to the ICU because he needed extra oxygen to breathe. They did a chest X-ray, and the results weren’t good. For a while, he said, none of the tests were good.
“I was getting pretty nervous,” he said. “And the whole time I was feeling fine, except for the breathing thing. It’s a goofy damn thing.”
Sullivan couldn’t — still can’t — begin to know how he caught the virus. But as he considers the possible people and places that might have exposed him, one seems to stick out: Sullivan works part time as a Pepsi Center usher and ticket checker, and he worked the Post Malone concert March 12, the last large gathering in Denver before the government took a series of actions to scale back social activity before eventually shutting it down altogether.
“I don’t know,” he said, pondering whether it was the Post Malone show that exposed him. “It felt like a regular crowd, regular night, regular way people act.”
At St. Anthony, he’s not doing well, exactly — he said Wednesday he was too weak to walk around his room, for instance, and that doctors considered intubating him at one point — but he’s also not getting worse, which comes as huge relief to his wife, two children and grandson, whom he talks to on Facetime daily. He hasn’t seen them, or anyone in his life, since he walked into the ER almost two weeks ago.
“They’re praying like crazy,” he said. “They’ve got their friends praying. My Facebook friends are praying. My hockey team is praying. Everyone’s worried.”
Unclear direction
Sullivan is one of some 875 people who have been hospitalized with the coronavirus in Colorado as of Saturday evening. At least 126 Coloradans have died. The total number of people here with the virus isn’t known — 4,565 cases are confirmed, but the real number could be 10 times higher, experts say.
The lack of testing means that perhaps tens of thousands have the virus in Colorado. Many carriers have no symptoms and no sense that they’re infected.
Even those who can get tests don’t always find certainty. Despite being tested March 24, Sullivan still hadn’t gotten his results back as of April 1.
And experts now say that many who receive negative test results may in fact be positive.
Maybe that’s what happened to Taylor Ryan’s wife. Ryan, of Edwards, tested positive for the virus but couldn’t figure out why his wife, who had all of his symptoms, including shortness of breath and a dry cough, came up negative.
“We were all kind of shocked,” said Ryan, 39. “We just had assumed that we had to have the same thing. So for me to come back positive and her not …”
Ryan’s wife, Jill, is the director of the Colorado Department of Public Health and Environment. So, of all people in the state, he’s as well positioned as anyone to access expertise on how to fight the virus, how to responsibly isolate.
But it speaks to the novelty of this coronavirus that even the husband of Colorado’s top health official hasn’t always known what to do. Governments here and elsewhere advise that people isolate until at least 72 hours after the resolution of symptoms, including the fever. But Ryan never caught a fever in all this. He’s not sure when it’s safe for him to reemerge, even in the limited capacity allowed by the state — that is, only for grocery shopping and other essential activities.
“There are different guidances out there, and for me it was difficult, because I never had the fever, so it was hard to measure from that,” he said.
He’s also unclear — and the science is, too — on the extent to which he’s protected from the virus moving forward, which gives him additional pause about when and how to reintegrate at any level.
“Hopefully I have some antibodies now,” he said. “It’s a little bit tougher for Jill now, because she could maybe still get exposed. I’m hopeful going forward that I can maybe be a little more protected moving forward. But I don’t know.”
Dying alone
Compared with others with the virus, Ryan is lucky. For one, he’s alive. But the symptoms he described don’t amount to any serious suffering — just a relatively bad illness, at the worst of it.
Alice Treibitz, a 91-year-old from Centennial, was not as lucky, her son Howard said.
The family doesn’t know how or when she caught the virus. She had a pre-existing pulmonary condition, so it’s hard to tell whether the symptoms she felt a few weeks earlier signaled coronavirus or something else. But by the night of March 25, Howard said, she was “really sick,” and it was clear she needed medical attention as her blood oxygen fell. She was rushed to Littleton Adventist Hospital early on the morning of March 26.
Treibitz, who tested positive for the coronavirus, died a few days later after a swift and highly unpleasant decline.
“I think in the end, I’m grateful that it didn’t go on longer, because it was really hard on her,” Howard said. “And I’m grateful that it didn’t take longer.”
The ugliness of the virus was compounded by the painful fact that Treibitz was dying alone. The family bought her an ipad so she could see them from her hospital bed, but that was the closest she got to any contact with loved ones in her dying days.
“That was very difficult, is all I can say,” Howard said. “Difficult for her, because she’s a person who always wanted to be surrounded by her family.”
Howard couldn’t say enough good things about the frontline hospital staff that treated his mother. He’s grateful to nurses Abby, Ally, Stacia and others whose names he never caught.
“They were so remarkably friendly and kind,” he said. “There was never a hint of chaos.”
“This is ridiculous”
Beth Arellano of Boulder saw plenty at the hospital that disturbed her.
On March 22, a Sunday, Arellano started suffering intestinal cramps in the evening. She thought maybe she had eaten something that didn’t sit well. By the next morning it was worse, and she was exhausted. Over the next two days, Arellano, a librarian at the University of Colorado, couldn’t do any work. She could hardly concentrate on mindless television.
She didn’t think she had the coronavirus because she didn’t have a fever and she’d only had one coughing episode, which she chalked up to the fact that her husband had been cooking chili peppers.
Then, on March 26, the breathing problems started.
“It was like an elephant was sitting on my chest,” said Arellano, 45, who is mildly asthmatic. By the 28th, it was worse. “I could not breathe, no matter how much I used my inhaler,” she said. “It felt like something was preventing air from going into my lungs.”
She reads the news, and so she knows how lethal the virus can be for people at higher risk, including asthmatics like her. She’s aware of the fact that this virus doesn’t just target older people like Treibitz or Sullivan; in the last couple days, at least two men in their 40s have died in Colorado. One of them was a healthy father of four from Larimer County who was exactly as old as Arellano.
“It makes you pretty scared,” she said.
She went to Boulder Community Health, and staff scanned her lungs. The scan showed her lungs were “completely clear,” she said, and that her oxygen saturation was at a perfect 100%.
“I couldn’t understand how that could be,” Arellano said. “The woman told me she’s seen that in the last three weeks, people coming in and not being able to breathe, and that plenty of cases and scans were like mine.”
She added, “So I’m in the ER thinking, OK, at this point surely they’ll give me a test. They said no, we can’t test you.”
It wasn’t until Arellano left the hospital that she realized how upsetting that was.
“It’s a public health emergency. How are we going to get a hold of it if we don’t know if people have it or not?” she added.
She was sent home, presumed to have the coronavirus but without the certainty of a test result. She’s doing better now, but worries about what it means that someone in her position — at elevated risk due to a pre-existing condition, literally gasping for air — couldn’t get tested.
“I really felt like I was going to suffocate, honestly. No exaggeration,” she said. “And I left thinking this is crazy, this is ridiculous, we’re going to be in lockdown mode forever.”
“Basically, decide for yourself ”
Gov. Jared Polis, typically mildmannered and diplomatic, has been unsparing in his criticism of limited test availability in the United States.
“We have been so disappointed by the lack of testing supplies,” he told reporters last week. “This is so frustrating, because (it’s) the only way we can address this virus.”
He said nearly a month ago that an effective plan to combat this virus would see thousands or even tens of thousands of Coloradans tested every single day. He said he hoped the state could open up to nine drive-up testing sites.
That never panned out.
Somehow, despite the shortage of tests, Heather Hodgson of Wheat Ridge has been tested twice for the virus.
She started coughing at work on March 10. By that evening, she could hear her lungs wheezing. She went to urgent care and was prescribed an inhaler and antibiotics, and given a doctor’s note to get tested for the coronavirus.
This was early on in Colorado’s response, when there was still some optimism about testing supplies. On March 11, the state opened one of the first drive-up testing sites in the country in Denver, and Hodgson drove over in the morning. She waited in her car for six hours, during which time she could not even access a bathroom. The system by which staff members decided how many cars to let through, and when, felt “haphazard” to her.
When it was finally her turn, they swabbed her nose and throat. It took two minutes, and it wasn’t pleasant, but she didn’t really mind, she said.
Five days later, on the 16th, she received a call from the state health department: She was positive for the coronavirus.
She recovered, but like Taylor Ryan, she wasn’t sure when to leave isolation.
“And that was crazy to me,” she said. “I’m not a doctor. I still to this day have a bit of a cough, so I don’t know if I’m no longer symptom-free.”
The guidance she received, she said, was “basically, decide for yourself when you can be around people again.
“So I’ve stayed in my house.” On March 31, her illness seemed to be roaring back to life. She had a fever and shortness of breath, and so she again visited with a doctor. And, again, she was directed to get tested for the virus. She was tested at a mobile clinic in Wheat Ridge and got the result in 48 hours — negative this time, she was told.
“My symptoms were different this time,” she said, “and the doctor thought maybe it would be good for research” for her to be tested twice.
Meanwhile, no one else in her office can get tested once. She knows of at least three colleagues who may have the virus, including one woman whose grandmother died of it.
“It’s so frustrating and confusing, the way that it’s being handled,” she said.
She’s trying to make sense of why she received such good care — not only was she tested twice, her results came back promptly both times — while thousands of others are left to wonder whether they’re infected, too, and how to proceed. But she’s coming up empty. It seems to her as random as the virus itself.
“They’re praying like crazy. They’ve got their friends praying. My Facebook friends are praying. My hockey team is praying. Everyone’s worried.”