Every Breath I Took Was More Excruciating Than the Last: Jared’s Story

March 15, 2015 is a date that probably doesn’t stand out to most of us – but Jared remembers that day clearly. It was the day he was hospitalized with a nearly fatal pulmonary embolism (PE).

Jared works in software sales and had been making round trips from Boston to Minnesota on a weekly basis. “I’d leave Boston on a Monday morning and come back on a Thursday – that was my life for a long time,” he recalls. One weekend, a mere two days after a return flight home, he had a bout of severe pain in his upper back near his left shoulder.

“I could barely move. I could barely breathe. I had no idea what was happening. I’d had a similar type of pain in the same area a few months prior but it went away after taking ibuprofen and applying heat. I was 29 years old and in relatively good health, so I didn’t think anything too serious was going on at first.”

Things worsened after 24 hours. “With every breath I took, it was like someone was stabbing me with a five-pronged knife and twisting it in my back. It was the worst pain I had ever experienced – and it was all localized to this one area. I couldn’t sleep. I couldn’t eat. I finally couldn’t bear the pain any longer and told my wife that we had to go to urgent care. When we got there, I could barely even walk. Every breath I took was more excruciating than the last.”

A CT scan identified a blood clot in Jared’s lung. He was sent to the emergency room and admitted to the hospital shortly after arrival. “I was told that I had lung infarctions as a result of the clot, meaning that some of my lung tissue wasn’t receiving enough blood flow or oxygen,” he explains. He was started on high-dose blood thinners and discharged three days later. “I’m so thankful that I caught the PE when I did. My doctor told me that if I had waited any longer, the clot could’ve killed me.”

What Jared didn’t know at the time is that there were a few risk factors at play that may have provoked his clot, including long-haul travel. “Before my PE, I don’t think I ever considered my travel to be an issue. I didn’t make a conscious effort to get up, walk around, or get the blood pumping through my legs. I was a typical sit-my-butt-in-the-seat traveler. I’d watch a movie, read a book, or do work from takeoff to landing.”

Jared also has ulcerative colitis (UC), a chronic inflammatory bowel disease (IBD) that affects the large intestine (colon). Although his UC has been well controlled for years, it can triple or quadruple his risk for a blood clot compared to people without IBD.

A few weeks after his PE, Jared followed up with a hematologist and his workup further revealed a prothrombin gene mutation. Prothrombin—also called coagulation factor II—is a protein in the blood that helps the blood clot when the body is injured. With a prothrombin gene mutation, the body can produce too much prothrombin, causing abnormal blood clots to form.

“No one in my family has had a blood clot before, so my genetic screen was a bit of a surprise. My doctor surmised that the frequent plane travel along with my colitis and gene mutation may have been the perfect storm for the blood clot. She made it clear that having a mutation didn’t mean that I would definitely have another blood clot – but in light of my lifestyle and risk factors, I opted to start lifelong anticoagulation on Xarelto® (rivaroxaban). It gives me peace of mind and helps me feel protected.”

Fortunately, Jared hasn’t had another blood clot in the last six years, but he’s certainly become more in tune with his body. “I’m acutely aware of what that pain feels like. In hindsight, I wish I would’ve taken my first episode of pain more seriously. I just thought I had a muscle spasm, and since the pain went away after a few days, I was convinced that’s what it was. Now I’m not so sure. Maybe it was a clot, maybe it wasn’t. Either way, I pay closer attention now when I have pain,” he says.

On his last trip to Australia, for example, he felt some pain in his upper thigh and decided to go to an imaging center right away for a scan. “I had just gotten off a very long flight and was concerned. I didn’t end up having a clot, but my mantra now is that I’d rather be safe than sorry, and I’d advocate for anyone in my shoes to do the same thing. Get your pain checked out. Why not have peace of mind?”

Since his PE, Jared has also adopted simple techniques to prevent future clots. “I’ve changed my behavior when I travel. Before COVID grounded all of us, I made it a habit to get up, walk around, and stretch in the aisle, even on short flights. I also wear compression socks for long-haul flights. They’re pretty comfortable, in my opinion! The way I look at it, these adjustments are easy to make. If they’ll help mitigate a future clot, I’m all in.”

Do you have a blood clot story you’d like to share?

If so, please contact Aviva Schwartz at [email protected].

*Originally published in The Beat – April 2021. Read the full newsletter here.

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