“I couldn’t even stand up that morning, I don’t know how I made it to work,” says Bryant, who lives in South Carolina. “Once I got there and sat down I thought everything was going to be fine, but I couldn’t get comfortable.” That’s when a coworker noticed Bryant’s swollen left leg and convinced her to go to the hospital. The leg was ice cold to the touch and stained with worrying shades of purple and blue. Just as she buckled herself into the driver’s seat of her car, Bryant got a phone call from her daughter’s school telling her she was sick and needed to be picked up. “I had to walk across campus and by the time I got her back to the vehicle, I was in tears,” says Bryant, who called her mother, a former nurse. Bryant’s mother suspected that Debra had a blood clot. “She told me, ‘Just make sure you don’t start rubbing that leg, because if there is something wrong it could cause more problems.’” Once she was admitted to the ER, Bryant was told to elevate her leg. This relieved some of the swelling and discoloration — and according to her doctor, saved her leg from amputation. Still, no one could tell her what was wrong. She was passed from doctor to doctor until one finally diagnosed her with a golf ball–sized blood clot in the groin area of her left leg, a condition known as deep vein thrombosis (DVT). The doctor administered a clot-busting drug and sent her home with medication to keep her blood from clotting again, and strict orders to remain on bedrest for the remainder of her pregnancy. Feeling isolated, scared, and without answers, Bryant set out to find her own help. She spent a lot of time doing research on her diagnosis and found a few Facebook groups for people with blood clots. “I knew there must be other people going through what I am who need someone to talk to, and if I am having trouble finding doctors, others must be, too.” The one group that stood out to her was called Lovenox Ladies and it was for women who were pregnant or trying to get pregnant. “I really clicked with a few women in these groups and we would talk frequently,” says Bryant, who also began blogging about her experience.” It was then that the specialist noticed compression in a postoperative scan and had a hunch Bryant may have a clotting disorder called May-Thurner syndrome (MTS). The diagnosis didn’t come as a surprise to her. “I had come across people on some Facebook groups who had blood clots and who had been diagnosed with MTS, but my other doctors didn’t consider it as an option because my hematologist said it was too rare,” says Bryant. What was surprising however was that Bryant’s problem was much larger than the blood clot doctors diagnosed in her leg a year earlier. After her MTS diagnosis, the interventional radiologist found many blood clots clogging the deep veins which extended from behind her left knee all the way to her right hip. After 6.5 hours of tissue plasminogen activator (TPA), a clot-busting drug, and a mechanical thrombectomy — a device that distributes the TPA into the veins — nearly all of the clots had dissolved, a faster treatment than the interventional radiologist had expected. “I didn’t even have discoloration in my legs when I got home. I felt good,” says Bryant.
Pregnancy Can Reveal Clotting Conditions
According to the Cleveland Clinic, MTS, also known as iliac vein compression syndrome, increases a person’s risk of DVT. In people with MTS, the right iliac artery compresses the left iliac vein, which drains blood from the pelvis to the lower limbs. This compression can cause large blood clots like the ones Bryant experienced during her second pregnancy. May-Thurner syndrome occurs in both men and women, however, it often goes undetected until a clot forms in the compressed veins, and even then, doctors often forgo the diagnosis, since it’s believed to be a rare disease. In an article published in February 2019 in the European Journal of Vascular Medicine, Romanian doctors pointed out that doctors aren’t screening for MTS enough, and that the diagnosis should be ruled out in any patient with a blood clot in their left iliac vein. But that rarely happens. According to Deepak Sudheendra, MD, director of the DVT and Complex Venous Disease Program at the Hospital of the University of Pennsylvania in Philadelphia, underdiagnosis of MTS is a worldwide problem. He says that while doctors are diagnosing MTS more now than they were a decade ago, it still usually goes unnoticed until a clot forms. “You can have compression there your whole life and never have any indication of it or any complications,” he says. “But a common time when MTS rears its head is when women are pregnant, since that vein gets compressed even more when you have a baby in the pelvic area.” Pregnant women are 5 times more likely to experience blood clotting than women who are not pregnant, and this risk extends to three months after giving birth, according to the CDC. This is because a woman’s blood naturally clots more easily while pregnant to prevent excessive bleeding during labor. “But the mere fact that a person has a clotting disorder or has had previous clots form does not necessarily preclude them from attempting to get pregnant,” says Rachel M. Bond, MD, a cardiologist and women’s heart health and prevention specialist at Dignity Health in Gilbert, Arizona, who recommends undergoing preconception counseling if you have a history of blood clots. During this counseling, an obstetrician may collaborate with the high-risk obstetrician or cardiovascular specialist to develop a good plan of action for the patient before they become pregnant. “Beyond that, if women are struggling with a recent or ongoing diagnosis of venous thrombotic disorders, I encourage that in addition to speaking to their trusted clinicians, they also consider utilizing support groups,” says Dr. Bond. “Many organizations have dedicated champions who can provide that much-needed emotional support at the community level, which is truly invaluable.”
Clot Reoccurrences Grate on Mental Health
In the months after her IVC was successfully withdrawn, and her clots were broken up, Bryant recalls feeling like herself, and happy to be able to focus on feedings, infant sleep schedules, and first smiles, rather than what would happen with her health. But then she had her first recurrence, in July 2014, when her son was less than 1 year old. Despite being on an anticoagulant medication, scans revealed that two new clots were forming in Bryant’s deep veins. She was treated again with clot-busting medication, permanently put on blood thinners, and realized her life wouldn’t be the same after that. “Because of the medication, I had to immediately stop breastfeeding my son. That getting cut short really hit me hard because it was on top of not being able to go back to work because of my medical situation, being in nonstop pain, and not being able to sleep or walk normally. I was hurting all the time and I was begging my doctors for answers and they just couldn’t figure it out,” says Bryant, who was later diagnosed with thoracic outlet syndrome, a blood vessel disorder, in addition to elevated factor 8, another clotting disorder. After two attempts, Bryant was approved for disability and found herself struggling with depression stemming from all she had lost to blood clots. “I had battled anxiety and depression at other points in my life but it really became concerning after the blood clots,” says Bryant, recalling that being unable to work taxed her self worth: At one point, she contemplated taking her own life. “I scared myself enough to open up to my mom about it and she went with me to see my primary doctor.” Bryant’s doctor switched her to a new antidepressant — she had a history of depression before her DVT but the isolation, pain, and loss she experienced post-clot made it worse — and referred her to a therapist. “I’m still learning new ways of approaching situations and how to look at things from other perspectives. That’s helping me better cope with things,” says Bryant. She also found solace in the online communities she discovered after her first clot, when she was on bedrest. The Facebook groups act as support groups for people with clotting disorders and survivors of DVT and PE. Bryant eventually found herself leading two groups, including one for women who were or would like to get pregnant, or are facing infertility due to a clotting disorder. She utilized her admin role in the groups as a way to help stay ahead of her depression. “The support people in these groups gave me and other women really inspired me,” says Bryant. “They were a great help and comfort to me during everything I was going through and I wanted to give that back."
Struggling With Mental Health Is Normal, So Is Getting Help
According to the Centers for Disease Control and Prevention (CDC), about one-third of people who have a DVT will have long-term complications. The same portion will experience another clot within 10 years of the first one. Dr. Sudheendra says that it’s perfectly normal to have feelings of anxiety and depression after or during an intense health event, especially in situations like DVT, where patients understand that they are at higher risk for another clot. “If those feelings are becoming overwhelming for you, I am a strong advocate for people taking medication to help them get over this challenging time and speaking with a therapist who specializes in chronic illness or PTSD,” he says, adding that it’s also up to doctors to understand how DVT impacts peoples’ mental health, and why patients may be showing up in the emergency room every time they experience pain. Some of these patients are labeled as drug seekers when really they are coping with anxiety, he says. According to Sudheendra, undissolved blood clots are converted to scar tissue as they heal, which can make it painful when blood is trying to flow through the narrowed area. “People start to get leg pain whenever they exercise and think they’re getting a fresh clot. That cycle of fear impacts people mentally,” says Sudheendra, adding that working with your doctor to understand what feelings are normal and which are potential symptoms of a clot is an important piece in post-clot mental healthcare. He also advises patients to advocate for a referral to see a vascular specialist, rather than a blood specialist, after being diagnosed with a blood clot.
