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Fantasy avatar 5  spacepirate07 wrote about 1 year 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...?

Category: Blood Clots

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Polar bear family  peter stratton - (67) - posted 11 months ago

I'm so sad to read of your condition. I'm on anti-coags for life and need to monitor my INR 'til I die. I know how scary blood clots can be - even though medication and diagnosis has come a long way, it's still a guessing game. I know it sounds lame but try not to stress about your condition. I think the body react s badly to too much mental and emotional stress. Be natural, stay cool and 'listen' to your body. Your body will alert you if something's wrong. Drink - I can't stress this enough, drink plenty of water each day. When you wake up ensure the first thing you do is drink a big glass of water. Dehydration makes the veins narrow, when you sleep you dehydrate. So, that's why it's important to drink when you wake up and continue to drink throughout the day to ensure you don't become dehydrated. To check if you are dehydrated an easy way to do is stand in front of a mirror and stick your tongue out. If it's at all in any way white - even just a little - you're dehydrate. I'm sending you all my best vibes and hope you're not too distressed. Stay cool.

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