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In March 2020, Lauren Wilke boarded 12 flights in 14 days for her job, which involved going into occupied nursing homes and apartments all across the country to inspect them. While she was out on a run between appointments in Salt Lake City, she couldn’t figure out if she was suffering from the effects of high altitude, jet lag, or if the worst-case scenario had happened.
It was so early in the pandemic, COVID-19 testing wasn’t readily available, but Wilke went home to Pittsburgh with a dry cough, fever, and inability to catch her breath. The next day she was in the hospital.
“I could tell that all of the nurses and staff there could see that I was the first of what would be a bigger issue,” Wilke said. “I was almost their guinea pig there. I don’t think they had anyone that had been quite that sick yet.”
Now 18 months later, Wilke, 37, who was an active ultrarunner prior to 2020, is suffering from what’s known as “long-haul” COVID. She spoke with Women’s Running first in July 2020 to describe what she had been through, but as symptoms persisted for another year, she volunteered to update us on her condition.
“Very similar to the last time we talked, I don’t have a whole lot of answers,” Wilke said. “Now that everything is FDA-approved, maybe we can push people to go get vaccinated.”
As she continues to struggle with asthma and other related health issues, Wilke spoke about the never-ending recovery, the expenses of her health care now, and why she hopes runners will take precautions as in-person races begin again.
Women’s Running: What’s the latest on your health?
Lauren Wilke: Since we talked last time, I got to work pretty quickly with a pulmonologist who is with the hospital near my house. That office is very used to treating older people with lung issues and young kids with asthma. They didn’t have a lot of COVID patients. I was diagnosed with severe asthma from the COVID damage. I’ve been on a slew of medications to control the asthma. They’re working really well. I never had a wheezing or acute attack—it’s more when I’m exposed to something or a do too much, my lungs shut down.
My lungs are at good capacity, but on the scale of like an 80-year-old smoker’s lung issues, not a person who wants to go run a 50 miler next week if I could. My breathing is still a problem. About a month or so ago I got accepted by the University of Pittsburgh Post-COVID Clinic. They specialize in long COVID. They have a whole team of doctors and the one who works with me specifically is an intensive care unit doctor. She’s seen that side of it. It took me a long time to get in because my case was so early I never had a positive COVID test to show them. A lot of nurses and doctors didn’t take my word, which was a whole different issue.
WR: What are the ways in which the clinic has been helpful?
LW: They have so much experience with people like me. My primary care doctor doesn’t have other long COVID patients, so it’s been a big help. The issue that limits my breathing still isn’t fully diagnosed but they suspect it’s a vocal cord disorder. Over the winter I was using a dry inhaler, like those round disc ones you see on TV. For some people they irritate and I was one of those people. They didn’t really pick up on that right away, but because of that I was coughing a lot more. Because of all that coughing, the theory is that my vocal cords aren’t timed with my breathing the right way anymore. When I’m sitting around and talking, it’s not much of an issue. But if I tried to walk up a hill or go run and try to take bigger breaths, that air is limited. That’s why my lungs measure OK but I don’t feel like I’m getting a full breath of air when I do anything. That’s why running is limited.
I start speech therapy this month, which is how they’ll retrain my vocal cords. It’s the same group that does UPMC’s brain fog issues. I think a lot of mine is fatigue. I stop thinking as fast as I normally would. Their speech therapists did traumatic brain injury retraining before COVID, so it’s a natural switch or add-on for them to treat brain fog patients as well.
I’ve also had a lot of fatigue and my primary care doctor didn’t particularly care about it. The nurse there made it seem like it might be in my head or I was whining. But being able to get bloodwork and more tests done with the COVID clinic, they found I’m “profoundly anemic.” I have almost no iron, ferritin, B12—when you don’t have that, you don’t have oxygen in your bloodstream, so I felt justified that I should feel tired.
WR: Is severe anemia thought to be a direct result of COVID or something you’ve always had?
LW: I’ve always had annual bloodwork done and it never popped up as an issue. My iron was always a little bit on the low side. It was a tossup if I could donate blood in the past, but my ferritin level is supposed to be between 16 and 125 and mine is two. They’re checking for celiac [which was negative]. It was either created by COVID or by a chain effect from COVID. Severe anemia is fairly common in women ultrarunners but I haven’t run any distance in a year and a half.
WR: Is there an official diagnosis called “long-haul COVID” now?
LW: My understanding is no, but there are ways that doctors can code COVID-related items for the insurance companies. Back earlier in the year most insurance covered all COVID-related issues at 100 percent in theory. At this point that has lapsed but if something is coded as COVID, there’s sometimes a better chance it will be covered by insurance. My pulmonologist has been requesting a chest CT for me for a year now or five or six times, but it’s been denied by my insurance. The COVID clinic put it in two weeks ago and it was approved. Now I can do that.
WR: What did getting accepted into the clinic entail?
LW: It’s all been driven by me personally up until this point. That’s one of the more frustrating aspects of long COVID. Up until this point I didn’t have anyone medically who was advocating with me and for me. My primary care doctor just didn’t believe me. To be accepted was self-referring to the clinic several times. The way it is set up has been great because I have a central doctor who spent 45 minutes on my intake, just asking me about my issues and my questions and learning what long COVID is for me. It’s different for everyone, but there’s a lot of overlap.
WR: What are some of those common symptoms?
LW: The breathing issue and fatigue are very common. Luckily at this point they’ve already pinpointed a big part of that is nutrient deficiency. The brain fog is common—most people have to stop their work day early or they’re not working. They’ve also said that most people have low blood pressure. I’ve had high blood pressure, which is partially family history. I’ve been taking preventative aspirin as a blood thinner, but that might also be a cause of the nutrient deficiency. It’s weighing the risks too—risk a blood clot or am I able to absorb iron?
WR: How many medications and supplements are you taking every day?
LW: It’s actually not quite so bad anymore. I see my pulmonologist every month for an asthma-related injection. I have two inhalers that I use daily, several times a day. I have a nebulizer that I use as needed. I try to not use it because it makes my whole body shake and that makes the rest of life hard. I start today with a thyroid medication. After that, a vitamin D. I’ve stopped the daily aspirin. I have a Singulair-like medication I take at night as needed, iron medication, and a B12 injection once a week. I take a depression medication, but that’s from beforehand.
WR: Do you feel any side effects from any of the medication, besides the shaking?
LW: I started doing the allergy medication as needed instead of every day. It was making me very tired and I couldn’t drink any alcohol at all with it. It would completely knock me out. I am not drinking hardly at all—maybe one drink a week if that. But absolutely nothing with that because it felt terrible.
WR: With all the appointments, tests, and medications, what are the financial implications?
LW: I ran the numbers and just for my prescribed medications, the co-pays and out-of-pocket expenses, it’s at about $1,500 a year. Once you add the supplements and over-the-counter medication, plus syringes for the B12, that’s probably another $400 or $500 a year. Doctor co-pays are between $50-$100 a month, so about $800 a year. Bloodwork is $50 a pop and I’ve had it six times this year. The CT scan will probably be about $2,000 is my guess. I hit my $2,000 deductible within the first two or three months of the year.
WR: So, it sounds like you can’t run at all?
LW: At this point I cannot run at all. My fatigue levels and oxygen levels are particularly bad right now, so that’s in the last month or two. My birthday was the end of June and was feeling a bit better. The weather was really good. I ran a little bit which was the longest I’ve done in a year and half. I did one minute of jogging and one minute of walking 37 times, because I turned 37. Total, it was five miles. I was shocked. It was adrenaline. And really good weather. Today we have an ozone warning day so I can’t do anything. I went to fertilize my squash in the garden for about five minutes and I had to come inside and sit down to catch my breath. I haven’t gone for a walk unsupervised in about a month. I need somebody there with me in case I need to stop or I black out. I was working in Puerto Rico and I blacked out twice because it was so humid there. Once it’s not summer, it’ll be easier and I will have more wiggle room to go outside and do things.
WR: I’m sure it’s difficult to be so limited after running so much prior to COVID. How do you cope with that aspect?
LW: I started therapy. I’m early in the process, but it’s been helpful. There’s a partial loss of identity but also putting my identity on hold, as if it could be back. So much of my day-to-day life was running and traveling full-time for work and going to [Penn State] for football games. On March 13, 2020, there was a dead-stop. There was no transition period. I never experienced the shutdown without being sick, so I have no understanding of how anybody else dealt with it. I was in a fog from the very beginning. It’s been hard to know who I am without what I did everyday. I’ve traveled once in the last 18 months and when I did that, I blacked out twice. I had to have a coworker with me at all times for safety.
I do have hope that it will all come back, but it won’t be a right-away thing either.
WR: How does long-haul COVID affect relationships and your work life?
LW: I’ve changed jobs within my company. It was a job people thought I should have taken years ago, but I didn’t because I liked all the travel and what I was doing. The universe made the decision for me, which is fine. I like it enough and I’m good at it. Being sick has made me particularly isolated. Right before the pandemic I had just started going to group runs, meeting people to go to hikes and trails runs. But that all stopped right away. I haven’t seen anyone I used to run or hike with because I physically can’t and I don’t want to put it on another person to walk a 30-minute mile and they have to keep an eye on me in case I fall down.
I know that everybody has been isolated and restricted. The pandemic took away being able to do things and see people, but I’ve also restricted that more than some people because some of my medications are immunosuppressive, so I can’t be in a higher-risk situations.
WR: Where do you find support and what fills the void of not being able to run?
LW: Doom-scrolling the internet? [laughing] Hmmm. I try to sleep. The high blood pressure is almost like a PTSD. I won’t fall completely asleep or I’ll be awake in a dream. I spend a lot more time in bed or on the couch. I got a kitten. I found him while I was working in Puerto Rico and brought him home. I also crochet, which I did before I got sick but I probably do a little bit more now.
WR: A year later, same question. What do you want runners, in particular, to know about your experience with COVID?
LW: Especially now with more aggressive strains of the virus, even if you think you’re healthy, you’re not invincible. If all of the appeals for getting a vaccine for your family, for your community—if all of that hasn’t been convincing, then even the selfish reason of not wanting to spend $5,000 a year on doctors’ appointments and medications is a reason and not wanting to stop running is a reason. Taking a couple of days off to let the vaccine process through your system is better than my now almost-two-year break. There are so many races I’d like to do or just meet a person or two to run and it’s not an option at this point.