“When I got injured and had the first blood clot, it was almost like the switch flipped and I kept getting them,” says Robertson. Just three months after healing from his first, Robertson had a second DVT. Sensing something wasn’t normal, his doctor tested his blood for certain mutations that cause clotting disorders. Robertson was diagnosed with factor V Leiden thrombophilia, a mutation that prevents a protein called activated protein C (APC) from inactivating coagulation, which normally prevents blood clots from growing dangerously large, according to Medline Plus. But in people with this mutation, the coagulation process is active longer than normal, which increases the chance that the blood will form abnormal clots. Robertson had inherited the mutation from both of his parents. In the 10 years since his first DVT, he has had five additional DVTs, three that occurred in the same spot as his first. On one occasion in 2017, Robertson felt a stabbing pain beneath his right rib cage. He drove to a local urgent care, thinking he had a pulled muscle, but lab results and a computerized tomography (CT) scan revealed that a clot had broken loose and traveled to his lungs. It was the first time one of his clots had caused a pulmonary embolism (PE), a potentially fatal complication of DVT. “Before then, I didn’t understand just how deadly blood clots were,” says Robertson, who was diagnosed with post-traumatic stress disorder (PTSD) because of the stress he experienced from his condition. “I became so obsessed and so full of anxiety. I kept thinking, What if I get another blood clot and it kills me? It kind of took over my life.”
Researchers Recognize a Need to Treat Mental Health in Blood Clot Survivors
According to Ian Kronish, MD, MPH, an associate director of the Center for Behavioral Cardiovascular Health at the Columbia University Irving Medical Center in New York City, cardiologists are getting better at screening patients who have had a potentially traumatic medical event for anxiety and depression, but PTSD is still largely off the radar. “That’s a bit of a blind spot for doctors right now,” says Dr. Kronish. “Having a PE or DVT is one of the scarier events because people know that they have this thing in their bodies that can happen again. Doctors don’t always pay attention to the anxiety that many patients feel after clotting, especially those who have had a recurrent event. That just drives anxiety and proves your concern.” A study published in February 2021, in the journal General Hospital Psychiatry, which Kronish co-authored, included nearly 1,000 people who had acute coronary syndrome, which can be caused in part by blood clots. The researchers found that almost 20 percent of the participants reported symptoms of PTSD directly related to the event one month after it happened. They also determined that people who had a history of life-threatening illness were significantly more likely to report PTSD after a second life-threatening event, which may be a recurrence of the initial life-threatening event. However, a person’s perception of how much danger they were in, whether or not they actually were in danger, plays a bigger role in PTSD than how serious an event turned out to be. Another study, published in August 2018, in General Hospital Psychiatry, which Kronish also co-authored, included 1,000 people who had been admitted to the hospital because they thought they were having a heart attack. The researchers found that whether or not a person actually was having a heart attack didn’t determine whether or not they developed PTSD from the event. Instead, their risk for PTSD was largely determined by the patient’s threat perception, or how much danger they believed they were in. After having a DVT or PE, it’s common for patients to frequent the emergency room, rattled every time they experience pain similar to the kind they experienced during their clotting incident. “Working with their doctor to determine when to seek medical care is something patients should do so they don’t fall into this pattern of constantly checking their body for symptoms, which drives anxiety about recurrences,” says Kronish, who notes that it’s difficult to navigate being on anticoagulant medication, which can cause bleeding, in addition to managing anxiety about having another clot. If a patient experiences slight leg pain while exercising, their fear may cause them to stop exercising all together, which can actually increase their risk of clotting. “It’s important for medical professionals to be mindful of how difficult it can be for patients to navigate these possibilities. For some of those patients, working with a therapist may be really important,” says Kronish.
Creating a Community of Support to Recover From PTSD
Robertson did work with a therapist, who taught him coping skills that helped with his PTSD. He also found solace in online support groups where people would help one another navigate their diagnosis. He also began leading one of the groups on Facebook that focuses on making people feel less alone during what is likely one of the scariest times of their lives. When Robertson first joined the support groups a decade ago, he said that they were made up of mostly women, even though men are twice as likely as women to have a recurrent blood clot, according to Deborah L. Ornstein, MD, a medical director of the Comprehensive Hemophilia and Thrombosis Center at Dartmouth-Hitchcock Medical Center. Robertson worried that societal tropes were keeping men from sharing their story or emotions after a traumatic event. In recent years, however, he said that he has seen a new trend. “More men are joining and they are more willing to admit they are scared and that’s great,” says Robertson. Robertson recently started a new Facebook group for DVT and PE survivors that focuses on post-clot fitness. These types of groups don’t give medical advice, but serve as a place for people to share their stories, experiences, wins, and worries in a community that understands what they are going through and can offer moral support rooted in empathy. “When you have your first blood clot, you don’t have a whole lot of answers right away,” Robertson says. “You go to the emergency room, they tell you you have a blood clot, put you on blood thinners, and send you home. Then you follow up with your primary care provider a couple weeks later and in the meantime, you’re just left with all these questions. Your head is spinning. I went into a lot of these groups as a scared patient, and now I’m in a position where I am offering support to people and giving them confidence that they’re going to be okay. That’s what raising awareness is all about — sharing your story and helping the next person.”
