PORTLAND, Ore. (KOIN) — Never in a million years did Oregon woman Jennifer English think she’d spend months lying in bed, but that’s where she’s been for most of her time since contracting COVID-19.
In March, English, a 46-year-old single mom who lives in Oregon City, was running marathons, working two jobs, and was rebuilding a 1968 travel trailer in her free time.
Then, on April 4, she started experiencing COVID-19 symptoms and everything changed.
“I’d like to say I’m a shell of myself,” English said. “It’s so frustrating because in my mind I want to be out running and doing all the things I did before … I’m not able to do it.”
English has been riding what she calls “the coronacoaster” for months. She’s one of hundreds of thousands of people who contracted the virus and say they aren’t getting better. They’re commonly referred to as COVID-19 “long-haulers.”
While doctors are currently overwhelmed with the surge in new coronavirus patients, they’re also seeing a growing number of people developing a range of persisting symptoms including things like cognitive impairment, perpetual fevers, muscle and nerve pain, depression, headache, dizziness, and palpitations. Some of the less-common, but more serious long-lasting complications include cardiovascular, respiratory, renal, dermatologic, neurologic, and psychiatric issues, according to the Centers for Disease Control and Prevention. Health care providers are referring to the condition by several names including “post-COVID-19 syndrome,” “post-acute COVID” or “chronic COVID.”
These long-lasting symptoms are not just appearing in patients who were hospitalized for the virus. People with mild cases are also reporting serious symptoms months after their initial illness, the CDC says.
English said her symptoms were severe in the beginning, but the hospital wouldn’t admit her because her fever wasn’t above 103 degrees and her oxygen levels weren’t low enough.
Now, English said she’s still experiencing regular gastrointestinal issues. She said she often forgets what she’s doing, has brain fog, feels dizzy, sees flashing in the corner of her eye, experiences leg spasms, and wakes up in the middle of the night gasping for air.
“I basically had every symptom you can imagine in the last seven months,” she said.
When English’s symptoms weren’t going away, she decided to post on Facebook to tell her friends what she was going through. That’s when a mutual friend put her in touch with Kari Rodriguez, a Pendleton, Oregon woman with a story very similar to English’s.
Rodriguez began showing coronavirus symptoms in July. Three weeks after her diagnosis, she still wasn’t feeling better. Now, months later, her symptoms are still wreaking havoc on her body. She and English are experiencing many of the same things.
“We both have nerve pain and leg pain in our legs that is sometimes, it’s hard to walk. We both have brain fog… We both have stomach pain, stomach sickness, just a general feeling of unwell, just not getting better,” Rodriguez described.
She said she’s also developed high blood pressure and is taking a type of epilepsy medication to help her migraines and lessen the nerve pain she’s feeling.
Before getting sick, Rodriguez walked four miles a day. She worked at Safeway to help support her husband and four kids.
“It’s unbelievable what I’m going through at 35 years old, previously a healthy person,” Rodriguez said. “I didn’t even take vitamins before. I was healthy … I was still at the prime of my life.”
Now, English and Rodriguez talk to one another every day. English said even though she hasn’t met Rodriguez in person, she feels like family. Together, they’re hoping to find doctors who can lead them on a road to recovery, but so far, they’ve had a hard time getting answers to their question: Why are they so sick after getting COVID-19?
Researchers want to help, but say they’re overwhelmed
In July, the CDC published a report on COVID-19 symptom duration using results from a survey. It showed that 35% of surveyed COVID-19 patients did not return to their usual state of health two to three weeks after testing positive for the virus.
Based on information from the UK COVID Symptom Study, in which people enter their ongoing symptoms on a smartphone app, approximately 10% of patients who tested positive for COVID-19 remain unwell beyond three weeks. This information was published in a BMJ report in August.
Dr. Akram Khan, a pulmonologist at Oregon Health & Science University, contributed to the CDC report.
As of November 2020, Khan said most research across the U.S. has been shut down so doctors, scientists, and other health care workers can focus on COVID-19. Unfortunately, with the immense number of new COVID-19 patients arriving at hospitals daily, it doesn’t leave much time to study long haulers.
Khan feels optimistic a vaccine will be available in spring 2021. It’s availability will allow researchers more time to study post-COVID-19 syndrome.
“By distributing the vaccine effectively, we can decrease the spread of the virus. That decreases the stress on the system, decreases the number of patients who are getting infected and that allows our current [health care providers]… to deal with these patients who are now suffering from this illness,” he explained.
One of the biggest complaints from long haulers is they feel doctors don’t believe them when they say they’re still experiencing symptoms months after getting sick. English said there was a time when she went to the emergency room when she felt like she was having a heart attack and was told to go home.
Khan said it’s sometimes difficult for doctors to understand subjective symptoms, and that pain can’t be quantified or outwardly measured. So, when long haulers’ tests come back normal, it’s hard for doctors to know what to do.
He said they should still believe the patients and take their concerns seriously.
“There are so many things going on on so many levels that we don’t understand and we just need to respect these patients and know that their symptoms are real and what they’re describing is actually true,” he said.
What people sometimes forget is that COVID-19 is a new virus and scientists still don’t know much about it, especially how it can impact patients in the long run.
“Health care providers don’t have all the answers. What we need to trust is that we will have more answers as time passes and our organizations, our institutions are working in our best interest,” Khan said.
One of those institutions is UC Davis’ Post-COVID-19 Clinic in Sacramento, Calif., which was formed in late October. Other clinics like it are located at Mount Sinai in New York City, the University of California-San Francisco, Stanford University Medical Center, the University of Colorado, Penn Medicine, the University of Texas Medical Branch, and the Cleveland Clinic.
Both English and Rodriguez said they’re considering traveling to the UC Davis clinic in California with the hope of receiving better care than they’re getting in Oregon.
Dr. Brooks Kuhn, a pulmonologist at UC Davis’ clinic, said ongoing respiratory issues remain the most common symptoms among post-COVID-19 patients, but they’re seeing a variety of things. That’s why the clinic staff doesn’t just include pulmonologists. It also has an asthma immunologist, a neurologist, ear, nose, and throat physicians, and a cardiologist.
“The way I kind of look at it is kind of like a wheel, like when you come into the clinic you’re at the core and we have well-defined spokes that come out for individual pathways that have been built to [healthcare providers] in our system,” Kuhn said.
Just as it’s disheartening for patients to hear a doctor say they don’t know how to treat them, it’s also frustrating for doctors to tell patients they don’t have all the answers.
“As a physician, I think the hardest thing for me is seeing that uncertainty and kind of how hard that is for people to wrap it around their heads. The challenge is always how to communicate that in a way that makes it clear that I’m not holding information back from you and it’s not because I don’t know. It’s because nobody knows,” Kuhn said.
He said oftentimes it’s difficult for long haulers to notice any progress because it’s so glacially slow. With his patients, he’s trying to celebrate small victories, like walking to the mailbox without getting out of breath or tests coming back with normal results. He said sometimes patients can be getting better, even when they don’t feel like they’re getting better.
An overarching trend he’s seeing among patients at the clinic is what he calls a sort of post traumatic stress disorder. He said when patients don’t feel like their normal selves, they’re constantly in a state of fear that they could go back to their worst point. He said all the physicians in the clinic are also helping their patients cope with their mental health and normalize their emotions.
When meeting in-person isn’t an option, patients find support online
After months of enduring symptoms, Jennifer English said she’s felt ready to give up on several occasions. She credits an online COVID-19 survivors’ support group for saving her life.
She discovered the group called Survivor Corps after 10 days of fighting the virus on her own in isolation. She said as soon as she logged in, she realized she wasn’t alone.
“At that point, I was so scared and so lonely and had no idea what was going on because no doctors would give me any answers, so it was such a great outlet for me,” she said.
A mutual friend connected English with Diana Berrent, the founder of Survivor Corps. Berrent was one of the first people in the New York City area to get the virus.
She founded the group on March 24 while in isolation. At the time, it was meant as a platform to mobilize an army of survivors. What Berrent didn’t realize was that she and hundreds of thousands of others had a long road of recovery ahead of them.
“When I got to the end, I thought I was through it. I thought that I was finished. I thought that once I cleared the virus I was better and what I didn’t realize is that this virus can attack, it can ravage every single organ in the body,” Berrent said.
She said she felt better for a couple months after her initial symptoms, but began feeling sick again over the summer. She visited several doctors and was eventually diagnosed with COVID-onset glaucoma. She also has lingering GI issues, headaches, and inner ear pain. Doctors have told her that her symptoms resemble those of a very serious concussion.
Berrent started Survivor Corps with the goal of motivating survivors like herself to support and participate in medical and scientific research and to take a more active role in trying to mitigate this pandemic. With more than 121,000 members, it’s now all that and so much more.
“This is not a group that I wanted to see grow to the number that it has, but I’m glad that it’s there to offer people the support that they need. They need information. They need support. They need the sort of camaraderie of other people who understand you,” Berrent said.
English said the friendships she’s made through Survivor Corps have pulled her through her darkest moments.
“I have a gal in Italy that I’m still talking to. One in Dubai. I had a friend in New York for a while … those three got me through the most difficult situations in my life. It was when I was feeling at my lowest of lows and had almost given up, all I’d have to do is message them and they’d be right there, bringing me support and bringing me back,” she said.
Since her interview with sister station KOIN 6 News, English said the closest friend she made through the group, a woman from Italy, died in her sleep. The woman fell ill with COVID-19 a week before English. They’d been talking to one another since mid-April.
English said she tears up when she thinks about Survivor Corps. She doesn’t know what she would have done without them and feels she owes everyone in the group so much gratitude for being there when no one else was.
Is there hope for long haulers?
English admits she’s asked herself “Why am I still fighting if it’s just going to be like this for the rest of my life?”
She considers herself an optimistic person, but the virus and her ongoing symptoms have taken it out of her.
“It’s been such a rough ride. A long hauler, you’re in it and we don’t know if we have hope of recovery at this point. It’s hard to fight for something when you don’t know if it exists or not,” she said. “I don’t know what tomorrow brings, let alone a year from now…. Or if I’ll even have a year from now.”
She and Rodriguez both said they’d like to see OHSU open a post- COVID-19 clinic, but so far, there’s no word of that happening.
There is one thing the two women are looking forward to – a new presidential administration.
Umatilla County, where Rodriguez lives, gave 64% of its votes to Donald Trump and 32% to Joe Biden in the November 2020 election, according to the county’s unofficial election results. Rodriguez blames President Trump’s early refusal to wear a mask as the reason many people in her community don’t take the virus seriously.
“To see Joe Biden stand on the stage and say, ‘Wear a mask. That’s your best protection.’ I feel like that was just such a huge, huge thing for us and I feel like this is just going to be a new thing,” Rodriguez said.
English agrees and says Biden’s election is giving her hope. She said it’s like a new beginning and admits that if she had the chance, she’d love to give Biden a hug and tell him thank you.
Her message to others is that wearing a mask isn’t a political statement. It’s science and a way to protect those around you.
Kuhn, the pulmonologist from UC Davis’ Post-COVID Clinic, encouraged both English and Rodriguez to seek treatment from his clinic, whether by traveling there or scheduling a telehealth appointment.
He said the more long haulers who visit the clinic, the more likely they are to find answers to the unsolved mysteries of the virus.
“The hope is that we see enough people, then we can start finding trends and that’s really what kicks off science,” he said. “What I’m hoping for the clinic is once we start seeing enough people that we can really start fast forward the research wheels a bit.”
For English and Rodriguez, relief can’t come soon enough.
“Our numbers are rising and it’s so scary. I don’t want anybody to go through what I’ve gone through. It’s been the worst experience of my life,” English said.
The two women feel they aren’t just fighting for their own lives right now, but for better treatment and outlooks for COVID-19 patients in the future.