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What the people who lived it want you to know

Blood clots can seem like a problem for the elderly or those who don’t get up a lot and move around a little. But potentially fatal clots that form in the deep veins of your body can happen to anyone. Even young and active people can get deep vein thrombosis (DVT). People who have had it have certain things they want you to know:

Blood clots are a serious health problem.

When clots form in your veins, they can rupture, travel through your bloodstream, and get stuck in your lungs. This blocks blood flow to your lungs and can lead to death.

Symptoms are not the same for everyone.

DVTs most often occur in one of your legs. The leg may swell and become hot and red. But that’s not always what happens.

Melissa Day, a 46-year-old physiotherapist in Norfolk, Va., Got up from her seat to disembark from a plane after a long flight and felt pain in her back so intense she thought she might faint. 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, Minnesota, it was a severely swollen and discolored arm that informed 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.

DVTs don’t just happen to the elderly or the inactive.

Caroline Kelly, now a 33-year-old model and entrepreneur from San Diego, was a 19-year-old football player when she first had DVT. Dana Pellegrino, a New York-based lawyer, was 29 and was training at least three times a week when it happened to her.

“I thought my calves were getting bigger from all the cardio dancing I did,” 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. 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.

Doctors may not check DVTs early on, especially in young and healthy people.

Doctors may think your symptoms are caused by something else. Kelly and Pellegrino were both sent home the first time they went to a doctor about the leg pain they later learned was a DVT clot. In both cases, doctors speculated it was muscle tension from exercise.

Pellegrino’s doctor told him 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 in Norfolk, that her back pain would simply pass.

Genetics and many lifestyle factors can increase your risk for DVT.

Being older, overweight, and having an inactive lifestyle are the main risk factors for blood clots, but other problems can increase your risk as well.

Some people inherit genes from their parents that increase their risk of blood clots.

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

Jones, the personal trainer, also learned that she has an inherited bleeding disorder, thrombophilia, which causes blood to clot unnecessarily.

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

Kelly and Pellegrino were also taking the pill. The same week, Pellegrino had the clot, she had two flights of 4 hours and some 2 hours on the road.

After having blood clots, these women stopped using hormonal contraceptives.

You can get them back.

Kelly was tested for all possible genetic bleeding disorders, but all were negative. Yet, 3 years after her first clot, she took a long flight to Hawaii and had another clot.

Although she does not have a bleeding disorder, thicker blood is flowing in her family. Almost everyone on his dad’s side is on blood thinners. Now she does too. You may need to keep taking blood thinners for the rest of your life.

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

But, she points out, she didn’t let blood thinners or 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.”

Treatments vary and recovery can take a long time.

For some blood clots, treatment is simply to wait for them to go away on their own. Doctors give you medicine to thin your blood and sometimes special instructions.

During the first few weeks after her blood clot, Pellegrino was encouraged to keep moving, but only with easy walking. He was forbidden to run or jump for fear that the clot would travel to his lungs. An ultrasound 6 months later confirmed that the clot was finally gone.

Kelly was bedridden for over 3 months while waiting 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 on medication. It took a year for the clots in his arm to clear up. During this time, she couldn’t lift anything heavy, and tasks like painting a bedroom wall, which she tried, left her in pain for days. His arm is still swollen in places and has not yet returned to full strength.

The day’s clots were so bad – they ran from her legs just below her heart – that she had to have surgery to remove them. Through catheters in the affected veins, doctors injected drugs to break down the clots. They used ultrasound to vibrate the veins, which helped separate the clumps of blood. After 24 hours, they went through the veins with special tools to remove all the broken pieces of clotted blood.

Eighteen months later, Day has post-thrombotic syndrome. His veins have stretched in this ordeal and the blood is not passing through them as it should. She wears thigh high compression stockings whenever she is standing to circulate her blood. Her legs tire easily, which means she still can’t do some of the things she could before the clots, like skiing and running.

Jones’ last episode of coagulation, her twelfth, brought her to the ICU. She had to have the clots broken and removed in a procedure like the one Day had. 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, “Sis, BP 80/40. Need you to be my voice. Don’t let me die here.

Support helps.

When you have a blood clot that hasn’t dissolved, the problem is that it breaks off and spreads to your heart or lungs. The clots in McCartney’s arms were dangerously close to his heart. “Every night I kissed my son, not knowing if I would wake up the next day,” she says.

Pellegrino was sometimes inconsolable in the months she waited for her clot to clear. “I would just cry. I was so scared that it could happen overnight, that the DVT would rupture and reach my lungs, and no one can tell you it doesn’t.

The two women were comforted by online support groups. “I looked for a group because I just wanted to know, ‘How do you deal with all this anxiety? Pellegrino says. McCartney doesn’t think she would be doing as well as she is today without the support of others who have been through the same thing.

“If it wasn’t for this group,” she said, “I don’t know if I would be right.”

If you want help living with DVT, check out the National Blood Clot Alliance Peer Support Network.

Sources

SOURCES:

Melissa Day, Norfolk, Virginia.

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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