But Dance’s mother recognized her daughter’s discomfort as something else, and told her they were going to the emergency room if she didn’t feel better by that evening. Later that day Dance remembers getting a computerized tomography (CT) scan in the ER and someone telling her she was just like her mom, who had also suffered a pulmonary embolism (PE) — a blockage in the pulmonary artery that’s usually caused by a blood clot. Dance spent the next few days in the intensive care unit (ICU). Doctors took her off the birth control she was on to control her endometriosis, which caused her to get her period. “I couldn’t get out of the bed because of all the tubes, so the nurse had to change my pad, and I had to go to the bathroom in a bed pan,” says Dance, recalling how this added to the trauma of her experience. The doctors treated her with a heparin drip, warfarin, and pain medicine that made her groggy and subdued. She couldn’t get out of bed because she was attached to compressed oxygen by a coil of clear tubing. “I remember hearing alarms all night from other patients. It was terrifying. Everyone kept commenting on how I was ‘too young to be there,’ like I didn’t already know that,” she says. “After that I was moved to the cardiology unit for four days where I shared a room with an elderly woman. I don’t remember much except having to learn about giving myself tummy shots of Lovenox and begging to go home. The shots were annoying, but at least in the hospital I had help.” “I really only had about a month of time to prove that I was well enough to leave home and conquer a new adventure,” she says, noting that she always left her house two hours early to give herself enough time to get to where she was going. In early 2011 she was able to stop her warfarin, an anti-clotting medication that she was prescribed after her first PE. And six months later she earned a spot in a PhD program on the West Coast to study mindfulness and mind-body medicine. She regularly made the long flight between New Jersey and Seattle, but after one flight in 2015, Dance vomited upon landing at Seattle-Tacoma International Airport. She knew something was wrong. “That’s not a me thing, I did those flights all the time,” says Dance. She spent the night with a friend, and that’s when the shooting pain in her leg started. “I thought ‘it would be weird if I had a blood clot,’ as if it was a joke,” says Dance. “But it wasn’t a joke.” A week after she returned to New Jersey she was in the ICU with her second PE. She was 25 years old.
Tests Revealed a Genetic Risk Factor for Blood Clots
While she was in the ICU, Dance tested positive for the MTHFR mutation, which, under certain circumstances, can raise a person’s risk for blood clots, especially when they are young, according to the Genetic and Rare Disease Information Center. Her mother also tested positive for the mutation. However, according to Leben Tefera, MD, a vascular medicine doctor at Cleveland Clinic in Ohio, doctors don’t yet understand the genetic risk factors that may cause blood clots in Black Americans like Dance because most of the research has been done on white patients. “We do know that there is a higher incidence of PE and deep vein thrombosis (DVT) in the African American community. But it wasn’t until the last decade or two that there was an emphasis on studying how race or ethnicity may be a risk factor and we can only test for what we know about. When it comes to an African American population, this makes it harder to test for mutations because there are likely ones we don’t yet know about,” says Dr. Tefera, who notes that family history is likely the biggest indicator of a person’s risk for clotting. “For me it makes sense that it would be related to heritage because that’s what makes up your genome, rather than the melanin content of your skin.” Studies have drawn conflicting conclusions for health outcomes for African Americans following PE. One abstract, published in May 2020 in the American Journal of Respiratory and Critical Care Medicine, included nearly 600 people and found that African Americans were less likely than white Americans to be admitted to the ICU and had shorter hospital stays after a PE than white Americans. They were also more likely to be sent home with a Warfarin prescription and less likely to die within the following year. However, older studies repeatedly found the opposite to be true — that African Americans were actually more likely to die of a PE than white Americans. Tefera also emphasizes the importance of patients feeling empowered to see another doctor if they don’t feel their concerns are being listened to, and recommends talking to a patient advocacy department, especially Black patients who have experienced disparities of care in the U.S. healthcare system. “Patients have to be their biggest advocate. I get tons of second and third opinion patients, and I see patients who seek other opinions and I catch things that have been missed in their case. If you feel like the care provider is not listening to you, you can always look for somewhere else,” says Tefera.
Meditation Helped Dance Accept Her Diagnosis
Although Dance was frustrated that this medical problem kept happening to her and “interrupting my life” she knew she couldn’t change it. So instead of getting angry at the situation, she started meditating, right there on the ICU bed. Because of her mindfulness practice, she was able to forgo pain medication, which made her feel nauseous and out of it and spent just two days in the hospital, compared with the seven she had following her first clot. She remembers placing her hand on her chest and finding her heartbeat to center herself in the moment. From there, she implemented deep breathing and guided imagery, focusing on a mantra. As she inhaled, she thought of the words “I am.” Then she exhaled, thinking, “grateful.” Another mantra she used was, “I am here,” following the same in and out breath rhythm. “I chose mantras to keep me grounded, centered, and focused on exercising my lungs. I also had to remind myself that I was alive. So I would focus on that,” says Dance.
Using Mindfulness to Cope With Chronic Illness
Studies have long shown the impact mindfulness and meditation can have on people, especially veterans, who are working to overcome post-traumatic stress disorder (PTSD). A literature review on PTSD in veterans, published in December 2020 in the journal Frontiers in Psychiatry, concluded that prevention and treatment efforts that included mindfulness techniques rooted in resilience, gratitude, and having a purpose in life mitigate the risk for PTSD in high-risk populations like veterans. According to Doug Oman, PhD, director of traineeship on spirituality and public health at the University of California in Berkeley, practicing mindfulness can be used to cope with any stressful situation, including health-related trauma. “Unlike a tranquilizer, mindfulness practices do not shut down or numb certain parts of the mind or brain, says Dr. Oman, adding that instead, mindfulness more often helps people reframe a distressing situation. The practice can be particularly helpful in calming anxiety surrounding a PE recurrence. Although much of the research on the efficacy of mindfulness focuses on paying attention to breath, it’s important to recognize that this may not be the best approach for everyone, especially for people who have had a PE, which often causes shortness of breath, says Oman. In this case, focusing on breath could be triggering and have the opposite effect. Instead, Oman recommends adopting a mantra, which a person can repeat over and over again when in a stressful situation. According to a paper published in June 2020 in the journal Mindfulness in Practice, which Oman coauthored, repeating a mantra has two psychological effects. First, mindfulness practices that focus on repeating a mantra can provide immediate relief from stressors by giving the mind something else — something calm — to focus on. And second, in the long-term, this practice can build resilience and the ability to more quickly recover from a crisis. “Even if a person hasn’t taken a class or workshop on mindfulness, they can still learn to repeat a mantra,” says Oman, noting that the one a person picks may be related to their religion or spirituality. “You may use the Buddhist mantram, ‘Om mani padme hum,’ or repeating the name of Jesus, which can serve the same purpose for Christians; or sacred phrases from the Jewish tradition such as ‘Barukh atah Adonai,’ or repeating the name of Allah in Islam, or Hindu mantrams such as ‘Rama.’” According to Tefera, mental health needs to be on doctors’ radar when evaluating a patient’s progress post-clot. “Physicians are really good at seeing how far you can walk before you get pain, but something I always ask is how are you coping with this? And that usually opens Pandora’s box,” says Tefera. “Some say, ‘I don’t know how to live.’ They were doing perfectly fine and then out of nowhere their life flips upside down. That uncertainty about what is going to happen next can cause serious psychological effects, especially since there is a high recurrence among this patient population. We need to ask patients how they are doing beyond their physical symptoms. Depending on how they answer, we refer them to a psychologist.” Dance credits her brief stint in the hospital for her second PE to her meditation practice. In fact, during the two days she was in the ICU, she recalls medical students expressing confusion as to why she was there since she seemed to look calm and not as sickly as one might expect. “I practiced a lot of gratitude meditations,” Dance says. “I was grateful knowing that I survived again because people die of blood clots. It still hits me sometimes and I can get very emotional about it. I was recently laying in bed with my wife and I just started crying and laughing and thinking I almost died twice,” she says. “As young people we think we’re untouchable, invincible, but we aren’t.”
