DVT: What People Who’ve Had It Want You to Know

DVT: What People Who’ve Had It Want You to Know

Blood clots may sound like a problem for older people or those who don’t get up and move around much. But potentially life-threatening clots that form in the veins deep within your body can happen to anyone. Even young and active people can get deep vein thrombosis (DVT). People who’ve had it have some things they want you to know:

When 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.

DVTs happen most often in one of your legs. The leg might swell and grow warm and red. But that’s not always what happens.

Melissa Day, a 46-year-old physical therapist in Norfolk, VA, stood up from her seat to deboard a plane after a long flight and felt a pain in her back so intense that she thought she might pass out. It wasn’t until 3 days later that her leg started to swell.

For Shauntel McCartney, a 48-year-old store manager in Grand Rapids, MN, it was a severely swollen and discolored arm that tipped her off 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 soccer-playing 19-year-old when she had DVT for the first time. Dana Pellegrino, a New York City-based lawyer, was 29 and worked out at least three times a week when it happened to her.

“I thought that 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, is a self-described 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 15 years since then.

Doctors might think your symptoms are caused by something else. Both Kelly and Pellegrino were sent home the first time they went to see a doctor about the leg pain they later learned was a DVT clot. In both cases, the doctors assumed 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 barely get out of bed,” she says.

Doctors told Day, the physical therapist from Norfolk, that her back pain would just pass.

Being older, overweight, and having an inactive lifestyle are top risk factors for blood clots, but other issues can raise your risk, too.

Some people inherit genes from their parents that raise their risk for clots.

McCartney, the store manager in Grand Rapids, learned only after her clot that she had inherited a gene variant, factor V Leiden mutation, from her father that put her at higher risk. Even with this mutation, many people go their whole lives without a blood clot. But McCartney had another risk factor: She smoked. Smoking can interfere with circulation and raise the risk for blood clots.

Jones, the personal trainer, also learned she had an inherited clotting disorder, thrombophilia, which causes the blood to clot unnecessarily.

Birth control that uses hormones to prevent pregnancy, such as the pill, can raise your risk too. A long-haul flight can be a factor also. Day was on the pill when she traveled 32 hours for a vacation with her husband in the Seychelles. It was when the last flight landed that the pain shot through her back. Later, after doctors figured out that blood clots were the problem, they learned she was born with some abnormalities in her vascular system that also made her prone to clots.

Kelly and Pellegrino were taking the pill too. The same week Pellegrino had the clot, she had two 4-hour flights and a couple of 2-hour drives.

After they had blood clots, these women stopped using hormonal contraceptives.

Kelly got tested for every possible genetic clotting disorder, but all were negative. Still, 3 years after her first clot, she took a long flight to Hawaii and had another clot.

Though she doesn’t have a clotting disorder, thicker blood runs in her family. Most everyone on her father’s side takes blood thinners. Now she does too. You may have to continue to take blood thinners for the rest of your life.

Blood thinners can be a life changer, she says. “Since I’m on blood thinners, I can’t get my ears pierced. I can’t work in a kitchen or another job where I might cut myself. I can’t play sports where I can get bruised up. I can’t eat a lot of leafy greens. Most things I want to do, I ask my cardiologist first.”

But, she stresses, she hasn’t let blood thinners, or the fear of another clot, keep 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, the treatment is just to wait for them to break up on their own. Doctors give you medication to thin your blood and sometimes special instructions.

In those first few weeks after her blood clot, Pellegrino was encouraged to keep moving, but only with easy walking. She was forbidden to run or jump for fear the clot would move to her lungs. An ultrasound 6 months later confirmed the clot had finally cleared.

Kelly was on bed rest for more than 3 months while she waited for her clot to dissolve. She couldn’t walk, and the pain was unbearable. “My mom had to quit her job to take care of me,” she recalls.

McCartney was also sent home with medications. It was a full year before the clots in her arm cleared. During that time, she couldn’t 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 back to its full strength.

Day’s clots were so bad — they ran from her legs to just below her heart — she had to have surgery to take them out. Through catheters in the affected veins, doctors injected medicine to break down the clots. They used ultrasound to vibrate the veins, which helped separate the clumps of blood. After 24 hours of this, they went into the veins with special tools to remove all the broken pieces of coagulated blood.

Eighteen months later, Day has post-thrombotic syndrome. Her veins got stretched out in this ordeal and blood doesn’t move through them like it should. She wears thigh-high compression stockings whenever she’ll be on her feet to keep her blood circulating. Her legs tire easily, which means she still can’t do some of the things she could before the clots, such as skiing and running.

Jones’ last clotting episode, her twelfth, landed her in the ICU. She had to have the clots broken up and removed in a procedure like the one Day underwent. 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, she texted her sister, “Sis, BP 80/40. Need you to be my voice. Don’t let me die in here.”

When you have a blood clot that hasn’t dissolved, the concern is that it will break off and travel to your heart or your lungs. The clots in McCartney’s arms were dangerously close to her heart. “Every night I kissed my son, not knowing whether I’d wake up the next day,” she says.

Pellegrino was sometimes inconsolable in the months when she waited for her clot to clear. “I would just cry. I was so afraid it could happen any day, that the DVT would break off and go to my lungs, and nobody can tell you that it’s not.”

Both women got 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’d be doing as well as she is today without the support of other people who’ve been through the same thing.

“If it weren’t for that group,” she says, “I don’t know if I’d have my sanity.”

If you want support for living with DVT, look up the National Blood Clot Alliance’s Peer Support Network.

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