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By Sharon Anderson, Special to Everyday Health
On the day my sister died, I had a premonition before I even scrambled to pick up the phone. I knew something was terribly wrong. I can only remember the first sentence, maybe two, of that conversation with my mom about the fateful news. Everything else still is a blur.
On June 7, 2009, my younger sister, Katie Projansky, died of blood clots in her lungs — a condition known as a pulmonary embolism (PE). She was 36 years old, and seven weeks pregnant with her first child.
Unrecognized Symptoms and a Tragic Death
As I look back at the events leading to her death, I can see that my sister showed telltale symptoms of blood clots that went misdiagnosed or undiagnosed by multiple healthcare providers.
She’d been experiencing shortness of breath for at least two years prior to her death. She dismissed it as a result of being out of shape, and she vowed to lose weight. But her shortness of breath limited her ability to exercise, which made it hard for her to lose weight. It became a vicious cycle.
She also experienced frequent fatigue. As her symptoms progressed, one doctor said she might have sleep apnea, or a compressed nerve related to a rare disease called tarsal tunnel syndrome, or even a vitamin B12 deficiency.
Another doctor, a cardiologist, thought she might have had a hole in her heart. And one physician’s assistant advised her to take two ibuprofen four times a day, sit on a heating pad, and soak in a hot bath.
A month before her death, she experienced pain so severe that she could barely walk or sleep. That mid-May day, doctors could not determine the source of her leg pain, but informed her of some welcome news: She was pregnant. What we didn’t know then is that pregnancy is a risk factor for venous blood clots.
Because no one recognized that her symptoms might indicate she had blood clots in her veins, known as venous thromboembolism (VTE), my sister became yet another statistic among the estimated 300,000 Americans who die of VTE blood clots each year. In her case, clots that formed in her leg (called deep vein thrombosis, or DVT) broke loose and traveled to her lungs, resulting in a deadly pulmonary embolism.
Prevention Helps if You Know Your Risks
Certain factors can increase your risk for developing VTE. Pregnancy, as in my sister’s case, is one. A qualified healthcare professional can do a simple VTE risk assessment and recommend prevention steps if you are at risk.
But like many of us, many healthcare professionals need a wake-up call about VTE risks factors, signs, and symptoms — and the need to do VTE assessments.
Now I’m ‘Katie’s Voice’ for Blood-Clot Awareness
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My sister was only 36 years old — too young to die.
A week after Katie’s death, I immersed myself in the world of DVT and PE, and have since vowed to honor her memory by advocacy and education through Katie’s Voice, a nonprofit organization dedicated to raising awareness about DVT and PE.
In the wake of our unnecessary tragedy came hope for other members of our family: I found out that we have a genetic predisposition to develop blood clots. My grandmother’s and sister’s death certificates were identical: Both died of VTE. Now, at least two other family members have been spared from a similar fate, thanks to screening that found hereditary factors that can increase the potential for VTE.
Blood Clot Facts You Should Know
While that fateful call from my mother is still a blur, I am now clear about the following facts:
- More than 500,000 people develop VTE in U.S. hospitals each year, yet many could be prevented.
- Up to 60 percent of VTE cases happen during or after hospitalization, making venous thromboembolism a leading preventable cause of hospital death.
- Surgery, long periods of immobilization, and pregnancy are among the risk factors for the blood clots of venous thromboembolism.
- VTE does not discriminate and can affect anyone regardless of their age, gender, race, or ethnicity.
Early and accurate diagnosis and management can contain VTE, and solid evidence-based prevention and treatment strategies do work.
Do You Know the Symptoms of a Venous Blood Clot?
Do yourself and your loved ones a favor: Get educated on VTE. While blood clots can occur without any warning signs or symptoms and, as we learned the hard way, go unrecognized and undiagnosed, you may have symptoms.
Symptoms of deep vein thrombosis (DVT) include:
- Pain or tenderness, often starting in the calf, which Katie experienced
- Swelling, including in the ankle or foot
- Redness or noticeable discoloration of the skin
- Warmth of the skin
Symptoms of pulmonary embolism (PE) include:
- Unexplained shortness of breath, which Katie experienced
- Rapid breathing
- Chest pain
- Rapid heart rate
- Lightheadedness or passing out
Engage in proactive dialogue with a trusted healthcare professional. Seek medical attention promptly if you have any of these symptoms or think something is amiss. Ask for a VTE screening if you are going into the hospital.
I’ll always remember Katie with passion, and now with purpose. For her sake, and for the sake of your loved ones, please remember: Think VTE. Everyone has a right to know if they’re at risk of developing VTE, and how to reduce that risk. Help us raise the decibel level through Katie’s Voice.
Sharon Anderson is founder and president of Katie’s Voice, a nonprofit organization dedicated to raising awareness about deep vein thrombosis and pulmonary embolism.
PHOTO CREDIT: Katie’s Voice