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Patient Stories

Living with Post-Thrombotic Anxiety: Holly’s Story

I had my first pulmonary embolism (PE) at the age of 30. My symptoms began with prolonged shortness of breath for about six weeks. There were many days when I woke up unable to breathe. I disregarded this symptom because I assumed I was just out of shape. However, my shortness of breath got progressively…

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Blood Clot Survivors Can Do Anything: Ashley’s Story

In December 2013, I joined a local gym after just moving to a new area. I spent a lot of time doing group classes and walking on the treadmill. One day while I was walking, I looked down and noticed some swelling in my lower left leg. I figured the swelling was just from the…

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I Had No Idea Pregnancy and Childbirth Were Risk Factors: Bailey’s Story

In September of 2020 at the age of 21, I was pregnant with my son during what appeared to be a perfectly normal pregnancy. Thankfully, I delivered a healthy baby boy. But just two days later, I began experiencing significant swelling in my left leg. I knew it was normal for pregnant women to retain…

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This Was Not About Getting Older: Joyce’s Story

In July 2019, I began experiencing shortness of breath on a regular basis, even if I was simply walking from the kitchen to the living room. I thought it was just a sign of aging, since I was 67 years old at the time. However, it progressed to the point that one day I suddenly…

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If I Had Waited Any Longer, I Could Have Died: Allyson’s Story

I am 18 years old and during November 2020 I contracted COVID-19. A few months later, I started having pain in my leg and I found it difficult to breathe. My mom took me to the doctor and they told me it was just anxiety. But three days later, I convinced my mom that something…

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An Overdue Diagnosis: Alysa’s Story

In February 2021, at 28 years old, I was diagnosed with a 5.5- inch blood clot in my left vena cava. I was admitted to the hospital and the images revealed that the clot had been present and developing for more than a year and a half! I also underwent knee surgery one month prior…

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Know Your Family Health History: Kelly’s Story

The morning of November 14, 2019 I fell in my bathroom and hit my head on the bathtub. I was unconscious, lying in a pool of blood, until I finally gained some life and crawled to call 9-1-1. When the medics arrived, I was barely able to breathe and went into cardiac arrest three times.…

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Knowledge is Power: Sheila’s Story

On September 5, 2021 I woke up in the middle of the night with a cramping pain in my right leg, which didn’t seem like anything serious at the time. I woke up the next morning and carried out my usual routine, but the pain became unbearable so I decided to see a doctor. The…

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My Commitment to CTEPH Awareness: Harry’s Story

The Road to Diagnosis As far back as my teenage years, I had experienced chronic shortness of breath. This worsened in my twenties and thirties as new symptoms emerged, including occasional chest and arm pains and general exhaustion. Over the years I sought the opinions of countless doctors, leading to misdiagnosis after misdiagnosis, …

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If You Believe You Can, You Will: John’s Story

In the fall of 2020, a near-fatal bilateral pulmonary embolism came from nowhere, cause unknown. As a 14-time marathoner and in the best shape of my life, this came as a complete shock. Following my diagnosis, I was put on blood thinners. As an athlete, adjusting to the blood thinners was a challenge. I was…

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