Carly Weinstein

Life after a blood clot: Carly Weinstein’s story of resilience

Carly Weinstein was the picture of good health. The 23-year-old New Yorker exercised regularly, ate a balanced diet and walked everywhere. But while Carly appeared strong and healthy, her body was battling a silent and deadly threat: blood clots.

Through her unexpected experience with blood clots, Carly has discovered new strength, healing and a renewed sense of purpose.

Dismissed and misdiagnosed

In parallel to her initial symptoms, Carly was going through an emotionally difficult time. Her close friend had just died, and she was grieving alongside loved ones.

“It started happening at my friend’s funeral,” Carly recalled. “My back was killing me. It was painful to sleep, and the pain was worse when I laid down. I would get woken up at night by shooting pains in my chest.”

She was extremely fatigued; even walking up the stairs was difficult. Over the next three weeks, Carly made repeated trips to doctors and the emergency room, desperate for answers. Doctors told her she was “just stressed” or, at one point, that she needed a massage.

At one emergency room visit, she received a computerized tomography (CT) scan without contrast and was diagnosed with pneumonia. Antibiotics did not help, and her pain only worsened.

“I knew something was wrong. The pain went from my back into my chest. It felt like it was shooting to my heart,” Carly said. “I knew this wasn’t normal.”

Finally, a D-dimer blood test ordered by her primary care physician revealed the truth. Carly was rushed back to the emergency room, where a CT scan (this time with dye) confirmed a startling diagnosis: Carly had a pulmonary embolism, a life-threatening blood clot in the lungs.

Uncovering hidden risk factors

Carly learned that her estrogen-based birth control, which she had been on for nearly 10 years, was a key risk factor. But there was more.

Genetic testing revealed she is heterozygous for a clotting disorder called Factor V Leiden, and further testing uncovered two antibodies associated with antiphospholipid syndrome (APS), an autoimmune clotting disorder.

“It was a really scary time because I didn’t know what it would mean to have Factor V and APS at the same time,” Carly said. “It’s scary. Can I not ever have kids? What does this mean for my future?”

Today, Carly continues to work closely with her hematology team in New York City to manage her risks and she is participating in a research trial.

The emotional aftermath

Physically, treatment brought relief. Emotionally, recovery was harder.

“Nobody wants to be on blood thinners, but the one I’m on lets me live my life pretty normally. That’s been a silver lining,” she said. “The harder part was the anxiety. For a good year, I’d have a headache and be scared I was having a stroke. If my chest hurt, I thought I had another clot. I became so sensitive to listening to my body because it had been such a scary time.”

Even months later, she returned to the emergency room with recurring chest pain, fearing the blood clot had returned. It hadn’t, but the stress was very real.

It also felt lonely and isolating.

“When I was diagnosed with a PE, I felt as if I was the only 20-something to experience a blood clot. When I told my family and friends, nobody had known someone to experience this at my age,” Carly said. “This experience has also given me the opportunity to share my story and be a resource for other people going through the same thing.”

“Your mind and body are so connected”

Today, Carly is 25-years-old and lives a thriving life in the city. In addition to staying active, she also shares her story so that other young people don’t go through what she did, especially women.

“I urge all women reading this to get tested for blood clotting genes or disorders before going on estrogen-based birth control. Sometimes, these life-threatening events can be preventable,” she remarked.

Looking back, Carly knows her journey was shaped not only by her health crisis, but also by her resilience.

“In stressful times, you really have to take care of your body and take care of yourself,” she says. “Your mind and body are so connected. Stress and anxiety can take a physical toll, and I’ve learned how important it is to take care of my mental health, too.”

Her diagnosis also made her more mindful of her body and lifestyle choices.

“After having a blood clot, I remember to stand up from my desk job, or when I’m on a long flight I make sure to get up every hour to make sure that I’m moving my body she said. “Being conscious of my body has made me an even healthier individual.”

This year, Carly is organizing a World Thrombosis Day fundraiser called the “Manhattan Thrombosis Walk” by walking from the top to the bottom of the city of Manhattan. Learn more and consider donating to Carly’s Manhattan Thrombosis Walk: https://gofund.me/108e57aee

For more information on World Thrombosis Day, visit www.worldthrombosisday.org.