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Mental health

The Older I Get, the Scarier it Gets: Brenda’s Story

In 1983, I began experiencing pain in my side, shortness of breath and coughing up blood. At the ER, I was diagnosed with pleurisy, which is inflammation of the tissues that line the lungs and chest cavity. I was only 17 years old. Two weeks later, I began having pain in my left groin and…

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Nurses Say I’m a Miracle: Marcus’ Story

I am a 39-year-old Native American. I have had 23 pulmonary emboli (PE) and 31 incidents of deep vein thrombosis (DVT) starting at age 22, caused by the factor V Leiden mutation. I also have congenital protein C and S deficiencies.   Nurses say I’m a miracle and call me a medical anomaly. Doctors ask…

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Young People Get Blood Clots Too: Michelle’s Story

When I had a deep vein thrombosis (DVT) in my left leg, I was a 19-year-old college freshman who had never heard of blood clots before. I assumed I’d broken my leg and hobbled to two classes before going to the hospital. The hospital was a rural one with only four beds in the ER,…

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A Combination of Missed Risk Factors: Gina’s Story

In 2017, at 21 years old, I was undergoing my third surgery on my left knee after I had torn my ACL and meniscus playing college basketball. I was back on the court a few short weeks later, but felt that my hamstring was unusually tight. This didn’t seem right to me, so I decided…

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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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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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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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I Felt Like No One Was Listening to Me: Natalie’s Story

A few days after my fourth daughter was born, I went to the emergency room for terrible leg pain. They did an ultrasound and assured me I did not have any blood clots. I went back again for a second time because I was certain I had a blood clot. Again, they sent me home…

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The Emotional Toll Has Been Challenging: Jenna’s Story

In September 2020, at the age of 24 and in good health, one week away from graduating with my master’s degree, I nearly lost my life. I woke up one day with a headache slightly worse than normal. Over a week, things got worse until I was in more pain than I had ever experienced…

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