Im currently stumbling around, making excuses, making NEW plans to add to the current list...
Im getting stuck in the 'plan and do nothing' stage.
Anyone fancy giving me like an hour of their time... Just to let me talk things out with them? Help me kick out of this planning paralysis
TL:DR - Vent about multiple, recurring bi lateral PE, even on meds.
So, like, 6ish years ago now, I collapsed, unconscious, on the side of the road. Blue lights to the hospital, scans and bloods, and more scans.
Doctor was a junior, lovely, but fresh.
Turns out - this is her words, not mine - 'you have a bi lateral pulmonary embolism, if you had gone home like you wanted you wouldn't be waking up tomorrow'.
Week in intensive care, followed by a week on a high dependancy ward, followed by 2 weeks on a 'normal' ward
Warfarin for life, but the shit doesn't work. No missed doses, no extras, no drugs, no drink. Just an inr that shoots up and down like an elevator.
6ish months later, and im back in the hospital, same thing again. I didn't stay in as long and managed to avoid intensive care. Go me.
What follows is my haematology consultant telling me she has no idea why it happened, but there is a 110% chance of it recurring within 5 years. So basically guaranteed.
They stick my onto Apixiban, and boom, 3 months, another hospital stay.
Im coming up on 7 years and 11 hospitalisation events ALL for recurring blood clots.
They dont know why, dont know what else to test, they have decided warfarin for life and get this - I have to 13mg A DAY to be even semi close to target.
Its all fucked. What the fuck do I fucking do. Im exhausted, sore, anxious, diagnosed now with OCD and cPTSD, my heart is enlarged, my lungs are scared, they're even talking about open heart surgery if it keeps happening.
Most recent stay at Che Hospital was Feb this year.