Pulmonary Emboli De Novo
spacepirate07 wrote 8 months ago
Hi all, 30 year old female here. After round 3 in three years of experiencing PEs, after extensive testing for clotting disorders, DVT (including several full body contrast MRI's to look for clots anywhere other than my lungs) they have concluded I'm a rare case of PE de novo - I spontaneously clot *in* my lungs with any inkling of trauma. Each time I've had a provoking incident - First two times where a chest injury in sports, third time a vehicle accident. I've always done short courses of blood thinners to rectify the situation since they've never found any evidence of any clotting disorders or auto-immune disease. Now they're considering a lifelong course of anti-coagulation. Has anyone else ever been diagnosed with anything like this? They've actually documented on angio-CTs clots spontaneously showing up out of nowhere.
My team of pulmonologists, haem, and vascular docs are stumped! The only other disorder I have is acute intermittent porphyria, which historically has not been linked to clotting...or...maybe...it is...?