Blood clots can seem like a problem for older people or for people who don’t get up and exercise much. But potentially life-threatening clots that form in the veins deep in your body can happen to anyone. Even young and active people can develop deep vein thrombosis (DVT). People who have had it want you to know a few things:
When clots form in your veins, they can break off, travel through your bloodstream, and end up in your lungs. This blocks blood flow to your lungs and can lead to death.
DVTs most often occur in one of your legs. The leg may swell and become warm and red. But that’s not always what happens.
Melissa Day, a 46-year-old physical therapist from Norfolk, VA, got up from her seat to get off a plane after a long flight and felt a pain in her back so severe she thought she might faint. It wasn’t until three days later that her leg started to swell.
For Shauntel McCartney, a 48-year-old store manager in Grand Rapids, Minnesota, it was a severely swollen and discolored arm that alerted her that something was wrong. “It was purple, red, green and blue from my shoulder to my fingertips and about three times the size of my other arm,” she says.
Caroline Kelly, now a 33-year-old model and entrepreneur from San Diego, was a 19-year-old soccer player when she first developed DVT. Dana Pellegrino, a lawyer from New York City, was 29 and working out at least three times a week when it happened to her.
“I thought my calves were getting bigger from all the dance cardio I had been doing,” Pellegrino recalls. “But they were swollen.”
Patrice Jones, who runs a personal training and meal prep service in Forestville, MD, calls herself a health fanatic. At one point she was running 56 miles a week. She had her first DVT at age 30 and has had a dozen in the fifteen years since.
Doctors may think your symptoms are caused by something else. Both Kelly and Pellegrino were sent home the first time they saw a doctor due to leg pain that they later learned was a DVT clot. In both cases, the doctors assumed that it was an exercise-related muscle strain.
Pellegrino’s doctor told her to come back if the pain got worse. “The next day the pain in my legs was so bad I could barely get out of bed,” she says.
Doctors told Day, the physiotherapist from Norfolk, that her back pain would go away on its own.
Being older, overweight and having an inactive lifestyle are the main risk factors for blood clots, but other problems can also increase your risk.
Some people inherit genes from their parents that increase the risk of clots.
McCartney, the store manager in Grand Rapids, only learned after her clot that she had inherited a gene variant from her father, the factor V Leiden mutation, that put her at greater risk. Even with this mutation, many people remain without a blood clot for their entire lives. But McCartney had another risk factor: she smoked. Smoking can disrupt circulation and increase the risk of blood clots.
Jones, the personal trainer, also discovered she had an inherited clotting disorder, thrombophilia, which causes the blood to clot unnecessarily.
Birth control that uses hormones to prevent pregnancy, such as birth control pills, can also increase your risk. A long-haul flight can also be a factor. Day was on the pill when she traveled 32 hours for a holiday with her husband in the Seychelles. When the last flight landed, pain shot through her back. Later, after doctors discovered that blood clots were the problem, they discovered that she had been born with some abnormalities in her vascular system that also made her prone to clots.
Kelly and Pellegrino also took the pill. The same week Pellegrino had the clot, she had two four-hour flights and a couple of two-hour car rides.
After developing blood clots, these women stopped taking hormonal contraceptives.
Kelly was tested for every possible genetic bleeding disorder, but all came back negative. Still, three years after her first clot, she took a long flight to Hawaii and suffered another clot.
Although she does not have a clotting disorder, thicker blood runs in her family. Almost everyone on my father’s side takes blood thinners. Now she does too. You may need to continue taking blood thinners for the rest of your life.
Blood thinners can be life-changing, she says. “Because I’m on blood thinners, I can’t get my ears pierced. I can’t work in a kitchen or any other job where I could cut myself. I cannot play sports where I could get bruises. I can’t eat a lot of leafy greens. Most things I want to do, I ask my cardiologist first.”
But she insists she hasn’t let blood thinners or the fear of another clot stop her from living her life. She recently launched a lipstick line. “You can still live your life and follow your dreams.”
For some blood clots, treatment involves waiting for them to break up on their own. Doctors give you medications to thin your blood and sometimes special instructions.
In the first few weeks after her blood clot, Pellegrino was encouraged to keep moving, but only by walking easily. She was not allowed to run or jump for fear the clot would move to her lungs. An ultrasound six months later confirmed that the clot had finally disappeared.
Kelly was on bed rest for more than three months while she waited for her clot to resolve. She could not walk and the pain was unbearable. “My mother had to quit her job to take care of me,” she remembers.
McCartney was also sent home with medication. It took a whole year for the clots in her arm to disappear. During that time, she could not lift anything heavy and tasks such as painting a bedroom wall, which she attempted, left her in pain for days. Her arm is still swollen in places and not yet at full strength.
Day’s clots were so bad — they ran from her legs to just below her heart — that she had to undergo surgery to remove them. Doctors injected drugs through catheters into the affected veins to break up the clots. They used ultrasound to vibrate the veins, which separated the blood clots. After 24 hours, they entered the veins with special tools to remove all the broken pieces of clotted blood.
Eighteen months later, Day has post-thrombotic syndrome. Her veins have been stretched during this ordeal and the blood no longer flows through them as it should. She wears thigh-high compression stockings when she is on her feet to keep her blood circulating. Her legs tire quickly, which means she still can’t do some of the things she could do before the clots, such as skiing and running.
Jones’ last clotting episode, when she was 12, landed her in intensive care. She had to have the clots broken up and removed in a procedure like Day’s. There were complications. A blood clot reached her esophagus and she was put on a ventilator for a day and a half. At one point her blood pressure dropped so low that she texted her sister: “Sister, blood pressure 80/40. I need you to be my voice. Don’t let me die here.’
If you have a blood clot that has not dissolved, you worry that it will break off and travel to your heart or lungs. The clots in McCartney’s arms were dangerously close to her heart. “Every night I kissed my son, not knowing if I would wake up the next day,” she says.
Pellegrino was sometimes inconsolable during the months she waited for her clot to clear. “I would just cry. I was so afraid that it could happen any day, that the DVT would break off and go to my lungs, and no one can tell you that it won’t.
Both women found comfort from online support groups. “I looked for a group because I just wanted to know, ‘How do I deal with all this anxiety?’” Pellegrino says. McCartney doesn’t think she would be doing as well as she is without the support of other people who have been through the same thing.