Factor V Leiden
The Pain in my Lungs and Back Returned: Isabelle’s Story
My cousin, who was 22, died of a pulmonary embolism when I was 10 years old. At autopsy, she was found to have protein C resistance, explained by the factor V Leiden mutation. As this mutation is genetic, the whole family was tested. I was found to be a carrier of this mutation, and I…
I Had Run 16 Miles the Day My Clot Was Discovered: David’s Story (with an update)
Update (July 29, 2024): I was excited to make my professional triathlon debut in Maine this past weekend, competing as the only athlete in the field with Factor V and needing to take blood thinners twice a day. It was a non-wetsuit swim, and I was really happy with my bike split on one of…
Knowledge is Power: Stephanie’s Story
When I was eight months pregnant, my grandmother passed away. My blood pressure began to spike, and I was diagnosed with gestational hypertension. I ended up being induced at 37 weeks in order to keep the baby safe. The night I delivered my daughter, my dad went into cardiac arrest. He passed away a week…
Make Sure to Move Around After Surgery: Jake’s Story
I had abdominal surgery in July 2020 and had a difficult recovery. I could barely move. On Sunday, October 18, 2020, I woke and showered. I was home alone — my wife was visiting her brother. While climbing the stairs back to our bedroom, I became extremely short of breath. Despite that, I made my…
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…
Not Just Calf Pain: Kayla’s Story
During the summer of 2012, I was going into my senior year of college and was training for Kent State’s Annual Black Squirrel 5k Race. I grew up playing soccer and I figured running a 5k would be a breeze. Little did I know, it was going to change my life forever. I was up…
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…
A Family Affair: Kathy’s Story
“I have shortness of breath.” This was the oft-repeated comment to each of my doctors. I was diagnosed with breast cancer in April 2020. By August 2020, I had major surgery that included three surgeons: breast cancer surgeon, thoracic surgeon, and plastic surgeon. This was followed up by 30 rounds of radiation. I also complained…
My Doctor Said I Was Fine, My Intuition Saved My Life: Chriselda’s Story
During my first pregnancy at 15 years old, I started to have intense burning and numbness on my left side groin and hip region that my OB/GYN stated was normal pregnancy pain. After giving birth, I followed up with my primary doctor and neurologist. All of my doctor’s visits concluded with no diagnosis. My second…
My PE Gave Me a New Perspective on Health Inequities: Vanessa’s Story
At 15 years old, I began taking hormonal contraceptives to relieve migraines. I received my prescription quickly after a brief medical exam where I was asked about my family history. I never imagined my journey on hormonal contraceptives would end abruptly nine years later after an emergency room diagnosis of bilateral pulmonary emboli, or bloods…