The Anxiety of Survival: Living in the Wake of a Pulmonary Embolism
At age 49, Ellie Brady of Burlington, Vermont, was the picture of health. Patrick’s wife and Emma’s mother, she was training for a half marathon. On a nine-mile training run she got out of breath. ‘I must be getting old,’ she thought, but she was concerned enough that she visited two doctors during the following week, both of whom dismissed the symptom because she was a runner and obviously fit.
But as the week progressed so did her symptoms — back pain, chest pain, uncontrollable chills — until she could no longer ignore them. With intense pain in her right upper back radiating into her chest, she drove herself to the ER, where she was diagnosed with a pulmonary embolism (PE), which is a blood clot in the lungs. The pain in her back had been caused by a clot in her right lung.
A PE is a type of venous thromboembolism (VTE), which is what blood clots in veins (rather than arteries) are called. PEs don’t form in the lungs, rather the clot forms in the extremities, mostly the thigh, and travels through the veins and heart to the lungs. This blockage can permanently injure the affected lung, lowering the blood’s oxygen level and potentially damaging other organs by starving them of oxygen. In Ellie’s case, she did lose some lung tissue, but her other organs were not affected.
Ellie’s doctors did tests to determine what caused her PE.
Their investigation determined that she had three significant risk factors for VTE: 1) she had a genetic clotting disorder; 2) she was taking hormones for menopause; and 3) she was more sedentary as the result of a new job.
“We were shocked and surprised,” Ellie said. “My friends and family couldn’t believe it because I don’t drink or smoke, I eat well and exercise regularly.”
Running is a big part of Ellie’s life so her first question for the medical team was “when can I run again? Of course, their goal was to keep me alive. This is when they told me the statistics and explained how lucky I was just to be alive,” she said. “It started off with ‘when can I run again’ and turned into ‘will I die?’” she remembered. The National Heart, Lung, and Blood Institute estimates that a third of patients left untreated will die. The majority of people who die from a PE do so within a few hours of it happening.
Although her clotting disorder, called Factor V Leiden, was news to her, she felt relief with the diagnosis. “Once I knew my risk factors, I felt like I had gained some control,” she said. “There were things I could do about it. I’ll always have the blood mutation, but I stopped taking hormones and switched my job.”
Ellie hiking with husband Patrick
with daughter Emma at the Boston Marathon
But that was the easy stuff. “Emotionally I was a mess,” she said. Every chest pain stimulated a doctor or ER visit, where another PE was ruled out. She was convinced any leg pains were another clot breaking free to travel through her heart to her lungs. “After multiple trips to the ER, my primary doctor discussed anxiety attacks with me. I had never experienced them before,” she said. “I went to therapy and had a wonderful experience. I would highly recommend it to anyone. My family dealt with their stress by supporting and encouraging me. We are a good team!”
She was released from the hospital on blood thinners, which she was supposed to take for six months. Because of her diet, she did not want to take warfarin, so she was prescribed rivaroxaban (Xarelto®), which she could not tolerate. “So, I gave myself Lovenox® (enoxaparin) injections twice a day for six months,” she said. “I hated them because they were so painful. But every time I gave myself an injection, I’d say, ‘I choose life.’”
Being on a blood thinner itself became a source of anxiety: “I was in constant fear that I would hit my head and have a brain bleed, but then I had severe anxiety when it was time to go off it — I was afraid I would throw another clot. That was anxiety central.” The Factor V was the cause of this dilemma, but her therapist and family helped her make up her mind. She asked Patrick how he felt about her going off the thinners. “He said, ‘It’s great, you don’t need them anymore.’ That’s all I needed to hear,” she said. Now she takes a baby aspirin every day and makes sure she stays hydrated.
After a few months, she began to feel better and started walking. At first it was around the block and close to home, but as her endurance improved she ventured farther and stayed out for hours. She asked about running and was told to listen to her body. “After running the last leg of the Vermont City Marathon in 2016, I ran a bunch of 5Ks, 10Ks, a half marathon,” she said. When we talked with her in May 2017, Ellie was in training for a marathon in August and an ultra-marathon in October. “After beating the clot, I’m feeling quite unstoppable.”
Ellie & some friends celebrate the finish of a race
After her diagnosis, her daughter, sister and mother were tested for Factor V, and all came back positive. “My mother had four miscarriages,” she said. “I’m not sure if Factor V had anything to do with that, but maybe. Her mother died from a stroke at a young age. I’m happy my sister and daughter have this information and can take preventative measures.”
There are other positive changes. “I don’t sweat the small stuff anymore. I wake up every morning and realize how lucky I am to be alive,” she said. “I tell my family how much they mean to me and I’m definitely more patient. I also value life more. I’ll take a spider outside instead of killing it. I take the time to watch a sunset or smell a flower. Before this happened, when I ran it was all about speed. Now I’m just happy to be able to do it. It’s not all positive, I still have anxiety about having another embolism, but yoga and exercise help with that.”
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