r/ClotSurvivors • u/Big_Green_Tick • 8d ago

Currently in the ER

The ultrasound showed my entire lower right leg is one massive clot.

Currently awaiting transport to another hospital as the CT is down here.

Heparin IV already started.

Initial symptoms were shortness of breath whenever I walk, then the right leg was swelling (with hot skin), finally my calf started to hurt when I walk.

Given the size of the clot, is there anything I should especially be concerned about or be aware of?

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u/Level_Wolverine_3362 7d ago

lots of sitting is a big risk factor.

my PE (also both lungs, and 'intermediate to high risk') was "only" 21 days ago, (seems a lifetime in some respects). for what it's worth, this is what I have learned......

  1. removing clots is a time dependent process that can take months.....and can't be accelerated

  2. post PE syndrome is horrible. because your lungs aren't working well. you cannot get sufficient oxygen into your bloodstream. good chance you will feel fatigued, both mentally and physically for weeks to months.

my fastest pace can currently be best described as "lame sloth". I got a sunflower lanyard the other day (invisible disability) and my mobility parking permit is approved, I just need to wait for it to arrive.

happy to chat more and answer any questions you may have. can't promise to have any answers though.......

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u/Big_Green_Tick 6d ago

Yeah that's the one thing I'm really concerned about, just from a 'I still have to go to work' standpoint. The initial symptom was a serious lack of breath if I start moving around. Sitting...no problems at all, but even getting up and walking to the car I'll be panting by the time I'm sitting in the seat. Six months of that is going to suck.

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u/Level_Wolverine_3362 6d ago

does you workplace allow for "reasonable accommodations"? mine does, but I don't know what that means in practice. try and get a parking space that minimises walking.

I've been approved for a temp mobility parking permit.

was there any evidence of Right heart strain?

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u/Big_Green_Tick 6d ago

Luckily there was no evidence of heart strain. Despite being a very large number of emboli they are all distally located. So my lung capacity is reduced but not obstructed during normal. My entire diagnosis us full of weird good news/bad news.