Listen to Anna Wenner discuss this essay on our podcast:
It started with chest pain.
I woke up in the middle of the night and realized I couldn’t take a deep breath. I immediately pulled up the internet to search my symptoms. It turns out, anything with the search terms “chest pain” and “trouble breathing” leads to the same advice: go straight to the emergency room (ER). Do not pass go. Do not collect $200.
Despite the internet’s alarm bells, the ER didn’t seem to share that same sense of urgency. I was a 29-year-old who had never been to the ER or hospital before and had a flawless medical history.
When my roommate and I arrived, they ran my vitals, determined I probably wasn’t going to drop dead in the next few minutes, and moved me to the bottom of the list. In a mostly empty waiting room, it took hours to talk to anyone about my symptoms. The longer I sat there, the easier it was to convince myself that I’d overreacted.
However, as I would later discover, the reason I couldn’t breathe properly was that I had a blood clot in my lung that could have killed me.
When I first got the diagnosis, I didn’t realize just how big of a deal a pulmonary embolism (PE) actually was. To put it bluntly, it’s really freaking serious. For nearly a quarter of people who had a PE, the first indication that something is wrong is suddenly dying. In fact, of the 900,000 people each year who experience blood clots in the veins, 100,000 of them die and three out of ten will experience another episode within ten years.
Though scientists have known about the connections between COVID-19 and blood clots since the earliest days of the pandemic, early studies only associated clots with those still actively infected with COVID-19. However, over time, scientists have found that clots remain a high risk (33 times higher than average) for more than a week after being infected with SARS-CoV-2 and still carry an elevated risk (1.8 times higher than average) a full year after infection.
Blood clots can lead to life-threatening conditions like pulmonary embolisms (PE), deep vein thrombosis (DVT), and strokes — all things that doctors don’t typically associate with younger patients. As early as 2020, research started to show a higher incidence of COVID-19-caused strokes in younger people than pre-pandemic. Later studies backed up this trend, including a 2024 study that found an increased risk of major adverse cardiac events, like stroke and heart attack, in unvaccinated people for at least three years following SARS-CoV-2 infection.
Many leading experts describe COVID-19 as a vascular disease, meaning that it affects blood vessels, arteries, and veins. Some studies have also found microclots in people with Long COVID as well as impaired vascular dysfunction, meaning cells lining their blood vessels were damaged.
By the time I finally did see the doctor at the ER that day, I felt pretty normal. The chest pain was gone, and I was almost able to take deep breaths again. Though the doctor ordered an X-ray, everything looked fine.
The doctor remained concerned until I mentioned that I’d caught SARS-CoV-2 a few weeks before. Immediately, my symptoms were chalked up to “lingering effects of the disease.” Never mind that I’d never had any similar symptoms while I’d had COVID-19. Everyone basically shrugged and said, “Yeah, there’s still lots we don’t understand about it. You’ll be fine.”
Thoroughly embarrassed — and $2,000 poorer — my roommate and I went home.
The doctor remained concerned until I mentioned that I’d caught SARS-CoV-2 a few weeks before. Immediately, my symptoms were chalked up to “lingering effects of the disease.”
Here we go again
I spent a week trying to ignore my symptoms.
When I was walking around or standing, I was fine. No pain, no breathing troubles. But when I tried to rest — particularly if I was horizontal in any way — it all came back. Finally, it got bad enough that I made a last-minute telehealth appointment and the available registered nurse (RN) sent me to get a D-Dimer blood test, which can spot unusual clotting activity.
In retrospect, that nurse saved my life. I’d barely gotten home from the lab where I was tested when I got a phone call. It was the RN, and she didn’t mince words—I needed to turn around and drive to the ER immediately.
Normally, the value for this test is supposed to be under 500. That day, mine was 2,711.
When I arrived at the ER, it was major déjà vu. My vitals were fine, I looked healthy, and everyone wondered why I was there. When the doctor came to talk to me, he lectured me about how D-Dimer tests are often skewed by COVID-19 and warned me that my RN had probably sent me in for nothing. It was hard to say which felt more condescending: the doctor dismissing my RN’s expertise so immediately, or the fact that he was just as eager to explain away my own experiences.
It would have been all-too-easy to slink away in embarrassment again, but I didn’t. This time, I’d come prepared.
On the way to the ER, I’d asked the RN what she was looking for with her test. So this time, I knew to ask about blood clots. The doctor was pretty unconvinced that I was in any real danger, but he did agree that if I really wanted to bother with it, we could do a computerized tomography (CT) scan “just in case.”
A few minutes later, the doctor returned ready to actually listen. As the RN had suspected, I had a pulmonary embolism — and it had already done long-term damage to my lungs.
I was put on blood thinners immediately, and the doctor said I could stay for observation or go home. Honestly, at that point I’d had enough of being dismissed by medical professionals and the doctor didn’t seem to think it was necessary, so I went home.
In hindsight, I probably shouldn’t have. Though I was ultimately fine, every doctor I’ve mentioned this to has been horrified that I wasn’t held overnight.
As the RN had suspected, I had a pulmonary embolism — and it had already done long-term damage to my lungs.
Life after my PE
It took a full year for me to get even remotely close to my old activity levels. As of my last CT, I still had damage in my lung, and I’ve spent the last two years with fatigue, shortness of breath, and tachycardia (a heartbeat that’s too fast). Doing any activity might be totally fine, or might feel like a herculean task that leaves me overheated, out of breath, and exhausted.
Because your chances of a second blood clot go up after having one, any time I have symptoms that could possibly mean a PE, I’m on strict orders to go straight back to the ER so I can run the whole gauntlet again. So far, I’ve been four times since my initial diagnosis (six times total, for those keeping score at home!). These symptoms can be anything from a lower-than-average blood oxygen level to chest pain.
Officially, no one has assigned me the diagnosis of Long COVID. However, going on three years later, my primary care doctor is still regularly sending me for tests to try and figure out how to lower my heart rate and help me improve.
Why self-advocacy matters so much
COVID-19-caused blood clots can happen to any person regardless of age, gender, race, or previous health history. If you’re experiencing strange, painful symptoms—especially any involving chest pain or trouble breathing—it is up to you to be your own best advocate.
Unfortunately, our country has a long history of medical gaslighting, or dismissing a genuine medical concern without proper evaluation because of implicit bias, ignorance, or medical paternalism. Women, people of color — particularly those who are Black — those who are LGBTQ+, and those who have a mental illness are especially likely to experience medical gaslighting.
Even now, every time I meet a new medical professional, they’re shocked when they go through my health history. They simply cannot connect how young I was with how serious my blood clot became. When I explain what happened, some are even quick to assign the full blame to a medication I had recently started and refuse to acknowledge COVID-19 as a factor at all.
Medical gaslighting is the reason I still have damage in my lung. If it hadn’t been for the RN who finally listened, it genuinely may have meant I wasn’t around to share this story at all.
Medical gaslighting is the reason I still have damage in my lung. If it hadn’t been for the RN who finally listened, it genuinely may have meant I wasn’t around to share this story at all.
Anna Wenner is a writer who’s just trying to live a life that will make her dog proud. You can find more of her writing at Wirecutter, SUCCESS, USA Today, and her website.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
One response
[…] more and more of us through their doors. And without urgent investment in clinical education, EDs will continue to fail patients who can’t afford to be dismissed. Many cardiac and clotting conditions, like deep vein […]