Blood clots can sound like a problem to the elderly or those who do not stand up and move around a lot. But potentially life-threatening clots, which 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 have a few things you should know:
Blood clots are a serious health problem.
If clots form in your veins, they can break off, travel through your bloodstream, and get caught in your lungs. This blocks blood flow to your lungs and can lead to death.
The symptoms are not the same for everyone.
DVTs most commonly occur in one of your legs. The leg could swell and become warm and red. But that doesn’t always happen.
Melissa Day, a 46-year-old physical therapist in Norfolk, VA, got up from her seat to get off a plane after a long flight and felt a backache so bad she thought she might pass out. It wasn’t until 3 days later that her leg swelled up.
For Shauntel McCartney, a 48-year-old store manager in Grand Rapids, MN, it was a badly swollen and discolored arm that indicated 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.
DVTs don’t just happen to the elderly or people who are inactive.
Caroline Kelly, now a 33-year-old model and entrepreneur from San Diego, was a 19-year-old soccer player when she first had DVT. Dana Pellegrino, a New York City-based attorney, was 29 years old and was exercising at least three times a week when it happened to her.
“I thought all the dance cardio I’d done made my calves bigger,” Pellegrino recalls. “But they were swollen.”
Patrice Jones, who runs a personal training and meal preparation service in Forestville, MD, is a self-described health fanatic. She ran 56 miles a week once. She had her first DVT at the age of 30 and has had a dozen in the 15 years since.
Doctors may not look for DVTs initially, especially in young and healthy people.
Doctors may think something else is causing your symptoms. Both Kelly and Pellegrino were sent home the first time they went to see the doctor about the leg pain 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 that I could hardly get up,” she says.
Doctors told Day, the Norfolk physical therapist, that her back pain would just go away.
Genetics and many lifestyle factors can increase your risk of DVT.
Being older, being overweight, and leading 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 blood clots.
McCartney, the branch manager at Grand Rapids, only found out after her clot that she inherited a genetic variant from her father, a factor V Leiden mutation, that put her at higher risk. Despite this mutation, many people live their entire lives without blood clots. But McCartney had another risk factor: she smoked. Smoking can affect blood flow and increase the risk of blood clots.
Jones, the personal trainer, also learned that she had a congenital clotting disorder, thrombophilia, which causes the blood to clot unnecessarily.
Birth control, which uses hormones to prevent pregnancy, like the pill, can also increase your risk. A long haul flight can also be a factor. Day was on the pill as she traveled 32 hours to Seychelles for a vacation with her husband. When the last flight landed, the pain shot through her back. Later, after doctors found out that blood clots were the problem, they learned that she was born with some abnormalities in her vasculature that also made her prone to blood clots.
Kelly and Pellegrino also took the pill. In the same week, Pellegrino had the clot, she had two 4-hour flights and a couple of 2-hour trips.
After they had blood clots, these women stopped using hormonal contraceptives.
You can get it again.
Kelly was tested for every possible genetic clotting disorder, but they all came back negative. Still 3 years after her first clot, she took a long flight to Hawaii and had another clot.
Although she does not have a coagulation disorder, her family has thicker blood. Almost everyone on their dad’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 change life, she says. “Since I have blood thinners, I can’t get my ears pierced. I can’t work in a kitchen or any other job where I might cut myself. I cannot do sports that can injure myself. I can’t eat a lot of leafy greens. Most of the things I want to do, I ask my cardiologist first. “
But she insists she didn’t let blood thinners or the fear of another clot stop her from living her life. She recently launched a line of lipstick. “You can still live your life and follow your dreams.”
Treatments vary, and recovery can take a long time.
For some blood clots, treatment is just waiting for them to separate on their own. Doctors will give you medication to thin your blood and sometimes special instructions.
For the first few weeks after her blood clot, Pellegrino was encouraged to keep moving, but only with light walking. She was not allowed to run or jump for fear the clot would move into her lungs. An ultrasound 6 months later confirmed that the clot was finally gone.
Kelly lay in bed for more than three months while she waited for her clot to clear. She couldn’t walk and the pain was unbearable. “My mother had to quit her job to take care of me,” she recalls.
McCartney was also sent home with medication. It took a year for the lumps to come off her arm. During this time she could not lift anything heavy and tasks like painting a bedroom wall, which she tried, left her in pain for days. Her arm is still swollen in places and not yet in full strength.
The blood clots that day were so bad – they ran from her legs to just below her heart – she had to have an operation to take them out. Doctors injected drugs into the affected veins through catheters to break down the blood clots. They used ultrasound to vibrate the veins, which helped separate the blood clots. After 24 hours, they went into the veins with special tools to remove any broken pieces of blood clot.
Eighteen months later, Day has post-thrombotic syndrome. Their veins were stretched out in this ordeal and blood does not flow through them as it should. She wears thigh-high compression stockings whenever she is on her feet to keep her blood circulating. Her legs tire easily, which means she still can’t do some of the things she was able to do before the clots, like skiing and running.
Jones’ last clotting episode, her twelfth, brought her to the intensive care unit. She had to have the clots break open and removed in a process like that of one day. There were complications. A blood clot reached her esophagus and she was ventilated for a day and a half. At some point her blood pressure dropped so much that she texted her sister: “Sister, BP 80/40. You have to be my voice Don’t let me die here “
Support helps.
If you have a blood clot that hasn’t broken up, the worry is that it will break off and travel to your heart or lungs. The lumps in McCartney’s arms were dangerously close to her heart. “I kissed my son every night without knowing if I would wake up the next day,” she says.
Pellegrino was sometimes heartbroken in the months she waited for her clot to come off. “I would just cry. I was so scared that any day it could happen that the DVT would break off and go to my lungs and no one can tell you it doesn’t. “
Both women were comforted by online support groups. “I was looking for a group because I just wanted to know, ‘How do I deal with all this fear?'” Says Pellegrino. McCartney doesn’t think she would do as well as she does today without the support of other people who went through the same thing.
“If it weren’t for this group,” she says, “I don’t know if I had my sanity.”
For assistance in living with DVT, visit the National Blood Clot Alliance’s Peer Support Network.
swell
SWELL:
Melissa Day, Norfolk, VA.
Shauntel McCartney, Grand Rapids, MN.
Caroline Kelly, San Diego.
Patrice Jones, Forestville, MD.
Dana Pellegrino, New York.
National Blood Clot Alliance.
Mayo Clinic: “Deep Vein Thrombosis (DVT)”.
Cedars Sinai: “Post-Thrombotic Syndrome”.
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