COVID-19: The Long Haul

Lee Vandegrift, 44, didn't think COVID-19 would knock her down so badly. She had no underlying medical conditions and at first she didn't think she had the virus because her symptoms didn't match what we were told to look for early on.

Vandegrift's doctor diagnosed her with the disease in March, before tests were even available.

"It was so mild I didn't think anything of it. I'm also single mom," she said, "and I work full time, so I'm tired. But then the following week I started to feel very strange; I had a sore throat, continuing headaches and tiredness."

She remained in isolation but as the weeks passed her illness progressed. She developed anxiety around her sickness, as many long-haulers do.

"Some moments you feel OK. Other moments - all of a sudden - you're like, 'I'm dying. I am going to die in my sleep overnight?'" Vandegrift said. "So that was hard."

Vandegrift worked from home as a researcher but eventually had to cut back her hours. After seven weeks she felt an improvement so she tried running again, since it's therapeutic for her, but she didn't have the energy.

Then her brain fog worsened. Her doctor said she was dealing with long-term health issues related to COVID-19.

"A huge fear during the summer: 'Is this my new permanent state of being? Is this who I am from now on?' I've gone from being able to do high-level research work and project management to barely being able to do that, let alone manage my own household."

Through Facebook support groups, Vandegrift found some comfort and comradery. After nine months, she said she's feeling more like herself. Over the past month her symptoms have greatly improved. She's regained much of her energy, can work full-time for the most part, and can run again.

But COVID-19 still leaves lingering impacts on her health. Doctors recently tested for kidney issues and she's still feeling fatigued at times. She's learned how to cope with her medical issues now and how to better pace herself.

"I'm so thankful it's getting better. It's getting better. I don't know if or when it will be 100% but I'm hopeful." 

She's also hopeful her story serves as a reminder.

"Right now, while we just don't know who is going to have what effect and we don't know why different people have different effects, we need to keep ourselves and each other safe, bottom line," Vandegrift said. "Just try to imagine other people other than yourself suffering from this. And care enough to prevent those people from getting it."

The daily struggle pushed Lori Wika Hinrichs to a dark place.

“I felt like I was going to choke and I couldn't breathe," she said. "Then I'd get a panic attack. That’s scary, when you think you're suffocating.”

It wasn’t just that. COVID-19 was impacting her brain; she grew confused and couldn’t remember things that happened the day prior.

She's almost 65 years old and is considered high risk. She had a stroke three years ago and was in and out of the hospital last year. 

“I was so afraid when COVID first came because I thought, ‘I cannot get it. I will die if I get it.' I was terrified, so I didn't go anywhere.”

In late June she did fly to Las Vegas for her grandkids' birthdays.

“About a week later I started feeling like I had the hard flu but I didn’t throw up or anything, Wika Hinrichs said. "I just had those body aches and where your head hurts. I started not being able to wake up and I slept for like 20 hours a day for a whole month. I could not wake up.”

A coronavirus test came back "inconclusive". Doctors first prescribed her an inhaler and codeine but she said neither helped. They later prescribed steroids, which weren’t helpful either.

Her doctors told her to get a pulse oximeter to monitor her O2 levels. She was told if her levels dipped to 90 she would need to go to the hospital. That happened one night, she said, but she waited it out and didn’t tell her family.

Wika Hinrichs, a real estate broker, is in the middle of designing homes for a new subdivision in Canby. Her job entails meeting people down at the site but, for months, she was unable to.

By October, the confusion consumed her brain.

“I even got on anti-depressants,” she said. “I live for my grandchildren. I can't have those thoughts. But I had those thoughts.”

Her isolation faded when she found a Facebook group for COVID long-haulers like her.

“It's so depressing - I don't want to cry about it,” Wika Hinrichs said, holding back tears. “But these people - almost all of them - you feel suicidal. Because it's just, like, it's not going to go away. It's just hard, it's really hard.”

Now, four months after getting first getting sick, she's regaining strength.

“I started taking zinc and vitamin C and vitamin B and it started making me feel better, the zinc!" Wika Hinrichs said. "Something about the zinc started making me-- I could tell I was getting stronger. Last month I’m like, ‘It’s going away!’ But I still can't catch my breath and I have pain in my lungs.”

While showing houses, she has to stop and sit to rest because she can’t take full breaths. She’s learned to pace herself and take it easy.

But she doesn't let it take her back to the darkness; instead she focuses on what she hopes will lead to an end.

“I’m just going to keep taking the vitamins, doing the rest, drinking the water. And if I relapse, I relapse. But it's not going to get to me,” she said. “I'm so much better. So I try to tell them: It will go away, it just affects everybody differently. But it will go away.”

Scott McClellan doesn't know if he'll fully recover from COVID-19, but the 49-year-old game designer from Portland now has more good days than bad.

“The first three months were absolutely brutal. I didn't know what was going on, I didn't know if I’d ever recover,” McClellan said. “Obviously I still want to get completely out of this. I'd like to come back to normal. Before this I was playing ice hockey twice a week and hiking all the time.”

Rewind to mid-March, before much was known about the novel coronavirus and COVID-19:

“I was pretty certain I was going to die. I started getting shortness of breath and I couldn't figure out what was going on. When I laid down my body went into panic mode and my heart was pumping and everything else, so I sat up and was trying to figure out what was happening.”

He went to the emergency room because he was experiencing cardiac issues. Doctors didn't test him for COVID-19 because he didn’t have the telltale signs we knew to look for in the early spring.

“They took my vitals, gave me an EKG to make sure I didn't have a heart attack because I thought I was having a heart attack. I was having these heart palpitations I’ve never experienced before. My heart was fluttering and I got really dizzy – I thought I was going to black out,” McClellan said. “The problem is it doesn't show up in regular blood work.”

He couldn't smell or sleep. Doctors thought it might be anxiety coupled with sinus issues he’d dealt with right before the shortness of breath started. For months he treated his symptoms as though they were related to an onset of anxiety, but no tests found he actually had anxiety.

He also couldn’t figure out why he was relapsing so often.

“I started getting these relapses and I get these really severe flu-like symptoms. I get really dizzy when I'm walking around, and I kept asking my doctor what's going on. It’s a post-viral syndrome of some sort.”

For five months Scott relapsed weekly, landing him in bed for days. Eventually, he found answers from a doctor at New York’s Pulmonary Wellness Foundation that he discovered through a COVID-19 survivor Facebook group.

Scott has still never tested positive for COVID-19.

Eight months after first getting sick, Scott's body still feels the impact every couple weeks.

“Now I’m having all these, like, autonomic dysfunction things where you stand up and blood pools in your feet and you’re dizzy for ten minutes,” he said.

He constantly suffers from tinnitus and blurry vision.

Some of the relapses still scare him because his health is like a rollercoaster and describes his long-haul recovery as marked by “peaks and valleys”.

He manages symptoms better now; he takes aspirin for headaches and a medley of supplements. In fact, he encourages everyone to take vitamin D to boost their immune systems. An anti-inflammatory diet and intermittent fasting are other recommendations.

But McClellan feels time may be the true healer.

“Most of my symptoms are much, much less than they were even a couple months ago.”

Scott writes a blog - which includes a symptom tracker – and is dedicated to educating himself and helping others facing the long haul.

“What it does to you long term, who knows? But what it does to you short term – and then for a while after for some people – it's really bad. It’s much harder to deal with than wearing a mask and limiting your social circles for a little while.”

Scott says he is waiting on biopsy results from an endoscopy that showed a bacterial overgrowth that he believes worsened due to a COVID infection. He’s also awaiting results from a lab in California.

Researchers are studying long-haulers like Scott more and more.

A CDC survey from July found 35% of symptomatic patients who test positive are still sick a few weeks later. As more people get COVID, another recent study found 10% aren't better after a month. No age group is immune from long COVID and you can be previously healthy.

The looming question: Why is this happening? Scott and health professionals he’s in contact with are searching for answers to that.

“Look, this is not unexpected. They’ve seen this type of thing from other serious viruses like MERS and SARS. When your body is hit by a virus this acute, and it can hit your system so hard, you can have secondary infections, you can have post-viral syndrome. So there’s all sorts of theories going around.”

When COVID-19 was first confirmed in the United States - weeks before Oregon shut down - Andrew Sieveking, a 39-year-old Portland dad, realized he had to take extra precautions. He has asthma and is considered overweight.

“Since I was a kid I’ve always had a feeling asthma, or an asthmatic complication, was going to be what ended my life,” he said.

Sieveking is a data analyst and had to head into the office for work one day in March.

“I go into the office, come back and a week after that I get sick. At first it was just difficulty breathing and a cough. And, slowly after a week, I was bedridden,” he said.

He didn't get tested for COVID-19 at the time because he didn’t have a fever and Oregon’s testing capacity was strained. But he grew worse over the next couple of weeks.

“By the time the second week hit I was struggling to be awake for more than 30 to 45 minutes during the day. I was just in bed sleeping the whole time. I was out of work for about a week.”

It wasn’t until early April that he started to improve.

Suddently, he was hit with a second round of sickness.

“I just was feeling back to this bedridden, couldn't breathe, constantly coughing state and at that point I finally said I’m going to the emergency room.”

Doctors ordered chest X-rays to get a look at his lungs and tested him for COVID-19. Sieveking’s test came back negative, seeing as he got tested weeks after he likely got infected.

“Having talked with doctors afterwards that could have been a COVID resurgence,” Sieveking said. “They gave me a little pulse oximeter to measure myself and my O2 stat average was 93.”

That's dangerously low, but not low enough to be hospitalized.

“I feel lucky that I didn't have a worse case, that mine was ‘mild’.”

His pulmonologist prescribed steroids and a long-release albuterol inhaler and he began feeling better.

“I was upwards of walking two miles a day - walking and jogging - trying to get my weight down, to after that period of illness I was having asthmatic attacks going across my apartment.”

Since then, Sieveking has been working with a trainer to build stamina.

“I’ve been working with a variety of doctors trying to piece it all together,” he said. “It's a journey! This whole year's been a journey.”

The set back and isolation took a mental toll and he went on anti-depressants.

“It’s been months now so it’s really set in that this is just where I'm at. My wife encourages me a lot and points out how things are getting better in small steps but there's definitely, definitely struggles with ‘this is never going to get better’.”

Sieveking has learned to appreciate simple milestones, like having the strength to shop with his wife and daughter last week.

“In all I did 18 blocks of walking which is a personal high since COVID,” Andrew said. “I got some good medication from my doctors and I’m moving more. It's slowly turning around.”

When he reflects on his recovery, Sieveking reminds others to be vigilant so they’ll never face the long haul.

“This could be a potential health issue the rest of your life. Why take the risk?”

Jessica Davis says her doctors believe she has a post-viral syndrome now, after first getting sick in March.

Family means everything to her, and not being able to see them for a month when she first got sick made her illness and isolation even more difficult.

“The list of appointments and emergency room visits, tests I have had done – I could keep scrolling and scrolling,” she said. “It's been very new and a little bit scary. But the scariest part was definitely the early few months, when no one was talking about long-haulers or anything, I had no idea what was going on. I didn't know what was wrong with me.”

She's improved some; six months ago she couldn't drive or go to the grocery store.

“It’s been difficult to work with it, but mentally I feel better about it because I know people don't usually die from this. People can usually work through it. But I miss how I felt before all this, definitely.”

By “before all this,” Davis means before a mild bout of COVID-19 changed her body, and her life.

She says she developed a cough for about a month, as well as chest pain and shortness of breath. But unlike many other long-haulers with more severe cases, she felt she could get air and breathe.

She couldn't get tested for COVID back in March, so she was diagnosed with a viral respiratory infection. Other than the first two weeks when she quarantined, Jessica has gone to her job at a hotel.

“About a month later I lost the cough and everything but I started to develop all these other symptoms that were just all over the place! My blood pressure was spiking out of control, I was having like these shaking episodes at night where my whole body would shake. It would happen for as long as 45 minutes. I just had a constant - which I still have now - a headache in the back of my head and neck.”

In July she was given an antibody test, which came back negative. Davis is frustrated she never tested positive, because she feels it impacted the care she received.

The previously healthy 37-year-old is now dealing with continued chest pain, fluctuating blood pressure and dizziness, nine months after first getting sick.

“All my life, doctors would say you're overweight but you're pretty healthy otherwise,” she said. “It’s hard for me to even go for a walk now and that's been so hard for me because this is the time when going out and getting fresh air, I feel like those are the things I miss doing, those little things.”

Like every long-hauler struggling for months with no end in sight, she still doesn’t know what her life will look like in the future.

“In my opinion I had a mild case," Davis said. "My doctor’s office told me to go to the ER four separate times in a month because my blood pressure kept skyrocketing.”

Blood pressure medication and connecting with other long-haulers through Facebook has helped in the healing process. She's doing more of what she loves, like seeing some family and going to the store.

“I am making progress. I feel like I'll get there eventually.”

Even with the challenges, Davis feels fortunate. But it saddens her to know more COVID-19 survivors will wind up like her, or worse.

“There’s going to be more people not just going to hospitals and passing away, but people who are living with this half-life compared to what they used to have."