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Gaslighting

I Was Described as Neurotic: Caroline’s Story

In April 2022 here in New Zealand, my first pulmonary embolism was detected by chance. I mentioned a fluttery heart while having a routine flu vaccine. This prompted the nurse to check, and she discovered an irregular rhythm. The doctor then ordered a few tests, including a D-dimer. By that night I was in the…

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Today, I’m Blessed to Have My Health: Kimberly’s Story

I started having superficial clots (SVTs) in the early 1990s, which was attributed to birth control. Genetic testing was not available at that time. I joined a list serve (email group) to learn more. Fifteen years later, with occasional SVTs and genetic testing now available, I was diagnosed with one factor V Leiden gene (heterozygous).…

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My Leg Pain Was Shrugged Off as a Labor Injury: Courtney’s Story

At five days postnatal, I started having pain in my right calf. I rang maternity at the hospital, who ran through the clot checklist: “Is it hot to touch? No. Is it red? No. Is it swollen? No.” Apart from the pain, there were no other symptoms. I was told to ring back if the…

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My Family History With Clots Saved My Life: Sadie’s Story

In December 2022, I experienced a miscarriage and developed constant pain in my right calf. Because my mom and an extended family member have a history of blood clots, I called my doctor right away to get it looked at. The doctor ran a D-dimer blood test and it came back high, so an ultrasound…

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I’m More Mindful: Lainey’s Story

I was being evaluated for chest pain by a pulmonologist who was treating me with opioids. The night before my diagnosis, I was participating in a group yoga class where I won a T-shirt for sweating the most. I had pools of sweat under me like it was a Bikram class, but the A/C was…

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I Ignored My Body’s Signals: Kim’s Story

In 2015, six weeks after starting a synthetic, estrogen-based birth control pill for perimenopausal symptoms, and one month into an overseas trip, I experienced the first symptoms of what I now know to be deep vein thrombosis and multiple pulmonary emboli. Sadly, my years of experience as a critical care nurse did not help me…

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I Lost a Year of My Life: Tatum’s Story

In January 2024, I had an uncomplicated, five-hour labor on my due date. Immediately after handing my baby off, a nurse applied a standard procedure intervention known as controlled cord traction. I instantly felt sick and demanded she stop, but it was too late. My baby’s placenta was shredded and forcibly ripped out of my…

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Being Faced With Your Mortality is Life-Changing: Casper’s Story

Not long after I turned 21, I started to notice the veins on the left side of my chest becoming extremely prominent. My left arm felt like it was falling asleep constantly throughout the day. It was strange, but I just assumed I had pulled a muscle or slept on it wrong. I didn’t feel…

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I Received the Diagnosis of Chronic Thromboembolic Disease (CTED): Christine’s Story

On June 16, 2022, I woke up early to get ready for a trip to a large car show when I noticed a sharp pain in my shoulder. Throughout the three-hour drive, I started to experience pain in my back when I breathed which lasted throughout the day. I did not experience symptoms the following…

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My Clot Started 10 Years Before It Was Found: Jana’s Story

In December 2022, I had the worst pain in my life in my left side of my buttocks after working out. Being a physical therapist and a retired high-level figure skater, I assumed I had strained a muscle until I was unable to walk or bear weight on my left leg. After three ER visits…

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