For People At Home With COVID-19 Symptoms, Self Care Is More Than 'Call Your Doctor'

It was March 20 and Lynn Schore had a sore throat. Five hours later, she was struggling to breathe.

The next two days were a blur: Schore fell asleep on her bed, hallucinating butterflies. She tried to reach for a thermometer and woke up hours later, realizing she'd passed out before she could read her temperature. She tried again — 104 degrees.

Feverish and disoriented, Schore dragged herself to the tub to run a cool bath and lower her body temperature. Schore, 60, lives alone with two cats on Portland's west side. She was terrified of passing out in the bathtub and drowning. But her fever scared her even more.

“If I feel like this in the morning, I’ll call a doctor,” she thought. But she kept forgetting to call, and didn’t have the strength to reach her phone.

“I think I could have died that night,” Schore said. She’s an avid swimmer and thinks that her physical fitness is the only reason she’s still here.

When patients call their doctor and say they might have COVID-19, a few things can happen. They can be told they probably have a cold, and to stay home and monitor their symptoms. They can be told that they’re probably infected with the new coronavirus, but that they don’t qualify for testing, and they should stay home and monitor their symptoms. Or they can be told to report to a hospital's emergency department, where they will be tested, have their vital signs taken, and potentially be hospitalized.

But patients are reporting that they’re receiving vague directions and varying responses as to how they should follow up, and how often. And there’s a lot of confusion around what “monitoring symptoms” means. That can be a real problem. While most people who have coronavirus have symptoms that can be managed at home, for a small part of the population, when the disease escalates, it can escalate very fast.

“There are people who have mild symptoms, and then it accelerates rapidly,” said Amesh Adalja, a medical doctor and senior scholar at Johns Hopkins University Center for Health Security. He’s talking about what’s become known as the second-week crash. Some people who are diagnosed with COVID-19 feel fine, or start to feel a little bit better, and then get sicker — very rapidly. Some develop something called ARDS, acute respiratory distress syndrome. The “acute” part means it has a rapid onset — sometimes just hours. Your lungs fill up with liquid, and it can be hard to get enough oxygen to your brain and lungs.

The conditions Adalja described line up with what Lynn Schore experienced. Every time she lay down, she felt like she was drowning. Every time she sat back up, she coughed up fluid.

“COVID just tries to drown you,” Schore said. “No matter how hard you fight it, it just keeps on drowning you.” When we first spoke, Schore was breathing hard, wheezing gasps between each word. Every time she took a deep breath, she was wracked by violent coughs.

Schore still doesn’t know if she has coronavirus, not for sure. By the time she felt well enough to call a doctor, she said, the worst had passed. It was Sunday, March 23, and she’d been sick for four days. She was able to stand without feeling dizzy. She wasn’t coughing up as much liquid. Schore works at a Portland-area grocery store. She thinks she got sick there.

“I wanted to get tested so they could close and sanitize the store,” Schore said, so even though she was feeling a bit better, she called her doctor. But Schore’s doctor told her that she could only get tested if she was hospitalized. Since she was feeling better, Schore felt that the hospital bed would be better used by someone else.

Her doctor told her to track her symptoms and follow up in a week. But beyond that, Schore said, she was told very little. She wasn’t given any information on exactly what “tracking her symptoms” would entail.

One week earlier on the other side of Portland, Alli Gotts called her doctor and said she was having trouble breathing. She worked at a nursing home, so her test was prioritized. Gotts' doctor told her to call back and check in every day. Some days she felt better, some days worse. Two weeks passed, and she still didn’t have a diagnosis.

“I felt like I had this pressure on my chest,” Gotts said. “I’ve never felt sick like that before. I was coughing. I never cough.” Gotts wondered if she had the virus; if she could have gotten someone else sick; if her retirement community should go on red alert. (They were already taking precautions in case of infection.)

There’s a lot of uncertainty around the coronavirus, testing and the spread of the disease. But there are specific things people should do to manage symptoms and monitor their health at home, said John Moorhead, an emergency physician at Oregon Health & Science University. “We’re not expecting people to be doctors,” Moorhead said. “We want you to keep track and use common sense, and reach out to health care providers if things get worse.”

OPB interviewed doctors and advocates and reviewed medical care-management guides to put together a list of suggestions for people who are self-isolating with coronavirus symptoms.

Write it down

Keep a diary of your symptoms and how they’re progressing. In this work-from-home age, it can be hard to keep track of the passage of time. The more detailed information you can give to your doctor, the better. It can help them make informed decisions about how fast your disease is progressing.

Shortness of breath

The biggest concern for a coronavirus patient is shortness of breath, because it’s an indicator of ARDS and pneumonia. Some people report feeling tightness in their chest, or pain, or feeling like they’re drowning whenever they lie down.

“We don’t want you to be at home alone with chest pain or serious respiratory symptoms,” Moorhead said, especially if you’re in an at-risk group. “If you have symptoms that are new or worsening, or that prevent you from doing a normal activity, you may need some help. That is when to call your doctor or call emergency medical services.”

If you or someone you care for has rapid, labored breathing and seems confused or fatigued, do not delay. Call an emergency room to let them know you’re coming, and take them to the doctor. Their lips and fingers might also have a blue tinge, particularly in children.

Because people who develop ARDS or severe pneumonia aren’t getting enough oxygen to their brain or other organs, they can become very disoriented. It can make it hard to call for help. That’s why, if you’re sick and suspect you have COVID-19, the first thing you should do is let friends know you’re sick and tell them to check in on you regularly.

People with ARDS or pneumonia need supplemental oxygen. If your lungs can’t get enough oxygen to your body, you can have trouble thinking and your organs can have trouble working. A lack of oxygen can cause long term damage to organs, including the brain.

Get friends to check in, especially if you live alone

In Wuhan, China, patients who tested positive for the coronavirus were sequestered in fever clinics. There were serious problems with those clinics, but there was one thing they did well: If a mild patient started to crash, there were people around who could recognize the symptoms quickly and get them to more extensive care. With potential COVID-19 cases isolating at home, health care workers are concerned they won’t call quickly enough for help.

Lynn Schore’s story illustrates how hard it can be to seek help. Between the fever and the lack of oxygen, Schore had trouble staying awake or even moving, and calling the doctor seemed an insurmountable task. If family members had been there, they would have carried her out the door.

Adalja and Moorhead both say some sort of formalized system to call and check in on potential coronavirus cases and make sure they haven’t crashed would fill a big need.

“I do think that when we’re taking care of people at home and having people self-monitor at home, we should use parts of the health care system to do home visits and home care,” Adalja said.

In the U.S., one-third of older people live alone. That number gets higher as you age: About 70% of those 85 and older live alone.

“There are lots of at-risk elderly patients. And I strongly suggest that family members and friends check in on folks literally on a daily basis if that’s possible,” Moorhead said. More often, if they can.

Moorhead also encourages communities and neighborhoods to organize ways to check in on the sick.

“I’ve been tremendously impressed with neighborhood associations and how their online activity has connected folks and helped them look out for each other.” If you’re looking for a way to help out in the pandemic, organizing a neighborhood check-in is one way to do it.

Loneliness can have real health impacts, too. Keeping in touch with your neighbors and family members (from a distance!) is good for you and good for them, Moorhead said.

Keep an eye on your fever

“Fever is something that we’ve asked people to monitor. We also ask them to treat it, because when you treat a fever, you feel better, and you’re able to take in fluids and take care of yourself,” Moorhead said.

Fever is one of the primary symptoms of COVID-19, though a substantial number of patients never develop one. One study found that when patients were first admitted to the hospital with COVID-19, only 44% had fever. But as the disease progressed, 89% eventually reported a high temperature. Fever is one way our bodies respond when they think they're sick. Scientists think the high temperature can make our body less hospitable to microbes, and that it be signaling the body to up its immune response.

Adalja says that fever can come in spikes; it’s not usually elevated all day long. If a patient is feverish, he’d keep track of the spikes. Is your temperature getting higher? Are the spikes coming more frequently? All of that information can help doctors figure out if you’re getting better or worse. Adalja also said you should use the same device each time you take your temperature and that you should take your temperature several times a day. The devices might not be entirely accurate, but it’s the trend that matters, so switching thermometers could confuse readings.

Moorhead said that the first thing people should do if they have a fever is to try to lower it with acetaminophen or ibuprofen. If that doesn’t make the fever bearable, they should call a doctor or a medical hotline.

“With a fever, the most worrisome thing would be if a fever isn’t responding to those medicines,” Moorhead said.

A fever doesn’t mean you’ll feel hot; chills and sweating are also a sign, Moorhead said. “We also get concerned if you don’t have a fever, if you get chills and feel cold," he said. "That can be another way that illness expresses itself.”

Fever can be mild in older patients or patients with underlying conditions. As we age, our immune system gets weaker, and we have less of a fever response.

Back pain

Research indicates that kidney damage can be a side effect of coronavirus. Studies have found that around half of hospitalized COVID-19 patients have proteins associated with kidney disease in their urine. If you have other COVID-19 symptoms and develop kidney-area pain, call your doctor.

Are you sick to your stomach?

Some people with COVID-19 develop gastrointestinal issues. Some of those people never develop respiratory illness at all. If you're sick to your stomach, you should assume that you have COVID-19 and quarantine yourself as strictly as possible to avoid spreading that disease — or whatever disease has upset your stomach.

If you have GI issues, you should also make sure you’re hydrating enough. Things like diarrhea and vomiting can lead to severe dehydration, which can require hospitalization. And that takes resources away from COVID-19 patients and puts you at risk of catching the virus, if you don’t have it already.

Stay hydrated. Especially if you’re sick, but even if you aren’t.

When Schore was sick and feverish, she was also sweating. “I woke up 13 hours later and my sheets were drenched,” she recalled. The next day, she could barely pee, which was surprising, because she’s pre-diabetic and pees often. That raised alarm bells for her.

“Maintaining fluid balance is always important,” Moorhead said. Staying hydrated doesn’t just help you when you’re sick — it’s a good idea all the time. If you’re dehydrated and you get sick, you’re already behind fighting the virus.

Dehydration doesn’t just come from a lack of water. It also comes from a lack of electrolyte minerals like sodium and potassium. If you’re sick, it’s a good idea to drink things that are formulated to help rehydrate you, like Pedialyte or Gatorade.

Symptoms of dehydration include headache, dizziness and dark-colored urine. If you’re sick and you stop peeing, contact a health care provider. You may need help rehydrating.

What qualifies as ‘getting worse’?

This one’s tricky, Adalja said. Everyone has different health risks and baselines. Adalja said that when in doubt, you should always call a doctor. A slightly worsening fever might not cause alarm in a healthy person, but they have underlying conditions, that can warrant more caution. If you think you’re sick and you’re in an at-risk group, talk to your doctor about what your threshold might be. The risk of crashing quickly is higher for at-risk patients, so your doctor may want to put you under medical supervision, or may tell you to continue to monitor your symptoms.

Stop smoking. Stop drinking. Get lots of rest.

If you think you’re getting sick, Moorhead and Adalja agree that the classic advice still holds true: Get lots of rest, drink plenty of fluids and quit your vices if you can. Anything you would do when you normally get sick, do it now.

I saw this COVID-19 cure on Facebook …

It's probably not a cure. See if it passes the sniff test. If it's not something that would help with a cold or flu, it won't help with the coronavirus. And flu antivirals don't work on the coronavirus either. Any medications — like hydroxychloroquine, an anti-malarial drug — should only be given to you by a doctor. Some research shows they might help, but they aren't yet proven to work, and taking them incorrectly can be fatal. Panicking has already caused shortages of hydroxychloroquine and other drugs, which can be necessary to treat other illnesses.

Who do I call if I’m uninsured or don’t have a primary care doctor?

If you don’t have a primary care doctor, most insurances offer “ask-a-nurse” hotlines. These are usually free, and they can help you decide if you should seek further care.

Related: Mask Crafters In Oregon Team Up To Help Medical Workers

If you are uninsured in the Portland area, you can reach out to the Coalition of Community Health Clinics. They have clinics for people on the Oregon Health Plan and people who are uninsured in the greater Portland area. Make sure to call ahead, so they know a suspected coronavirus case is coming. They may also arrange a visit over the phone.

If you are uninsured anywhere in Oregon, call 211 or visit 211info.org. The Oregon Health Authority has people on-staff to help connect you with a clinic that accepts uninsured patients. Most of these clinics are federally qualified health care centers (FQHCs.) They are required to provide services on a sliding scale based on ability to pay.

Take care of yourself

There’s a pandemic going on, but that doesn’t mean the coronavirus is the only thing to worry about. Health care providers say that it’s still important to treat pre-existing conditions that aren’t related to the coronavirus during the pandemic to protect long-term health.

Recovery

Alli Gotts is feeling much better. While she was sick, her friends called her regularly to check in — so much so that sometimes, she just wished they would stop calling. She wanted to sleep.

Her test results came back on Thursday, March 26, 11 days after she was swabbed and 15 days after she experienced her first symptoms. She tested negative for COVID-19.

Lynn Schore said she’s feeling better too, but she’s not out of the woods yet. For most of the last week of March, she slept a lot, and got fatigued climbing stairs or trying to clean. On the day Gotts got her test results back, Schore cleaned her entire house without getting tired — it felt like an accomplishment. She still hasn’t been tested, but she’s been having back pain and discolored urine.

Last Friday she talked to her doctor, and they’re worried about her kidneys. She’s waiting for the results of her urinalysis.