I had my first deep vein thrombosis and pulmonary embolism at 18 years old due to May-Thurner Syndrome. My symptoms were left lower abdomen pain and fainting.
I was told multiple times it was a miracle I was alive due to the clot burden. I spent 12 days in the hospital and had a temporary IVC filter and a permanent iliac stent placed. I was prescribed anticoagulants for 18 months.
After this, I suffered for many years with fainting, shortness of breath, inflammation, anxiety, decreased mobility, and chronic pain. I felt like I was going in circles for years trying to get answers to all my symptoms.
I recently had my second pulmonary embolism at 35. I was having extreme back pain and coughing up blood before my hospitalization and ICU stay. I will now be on blood thinners for life and was diagnosed with APS (antiphospholipid syndrome), antithrombin 3 deficiency, and chronic thromboembolic disease.
I am currently scheduling a pulmonary thromboendarterectomy to remove the old solidified chronic clots. I am hoping this will change my life.
Blood clotting disorders are rare, but with increased awareness and education, we can contribute to the data and field of science to create better outcomes and treatments for people who suffer from blood clots and blood clotting disorders.
Finding the Blood Clot Alliance has helped me feel less alone knowing there are other rare warriors out there.
