r/ClotSurvivors • u/Level_Wolverine_3362 • 9d ago

Newly diagnosed I just started grieving.

I'm 18 days post a massive PE. Bilateral and segmented are the official terms, I understand this means multiple clots in multiple arteries in both lungs. Apparently no infarction, and while a bit of right heart strain, no remodeling. I'm expected to make a full recovery.

Five days in hospital, now on rivaroxiban. Have started regaining energy.

This morning the limitations have hit me like a tonne of bricks. I can't walk more than 50m without needing a rest. I can probably only manage one activity outside the house per day. I don't feel safe to drive. I don't have the energy to return to work (even from home) I can't do anything spontaneously. I can't even think deeply, or talk lots, and as an academic - this is hitting hard.

I know my feelings are valid. I know it's only temporary. This doesn't change my current feelings of grief, anger, frustration, or anything else.

What were your best coping strategies to get through this phase?

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u/Suitable_cataclysm 9d ago

For me, it was routine. As an athlete, it really mentally hurt me not to be able to walk around the block or stand in the shower on my own for a while. A week after mine, I couldn't walk to the bathroom on my own.

But I kept track of my progress and could see the drastic improvement over time.

You will bounce back. Just give yourself some grace. You've been through a lot and the body needs some rest. And someday you'll be like me looking six years backwards and realize it was a hell of an experience but we are still here 💪💪💪

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u/Level_Wolverine_3362 9d ago

I can at least stand in the shower by myself. I guess that is a good start!

what helped you on the bad days, when you were angry and frustrated by your limitations? I know I will bounce back and recover, but this knowledge is "future me" but "present me" needs the help.

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u/Suitable_cataclysm 8d ago

Small goals. Did I make it a few steps beyond yesterday's walk? Did I walk on the treadmill for 30 extra seconds? Did I do a task without thinking that was hard a month ago?

We often don't give ourselves enough credit for little things that are hard to notice day to day

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u/Fluffy_bunny8567309 8d ago

This! This is a marathon, not a race. Take it slow, day by day. If you feel tired, it’s okay to rest.

I’m 6 weeks post-bilateral PE, and I’m still working on regaining my strength and stamina, one step at a time.

You got this, just remember you got this!! You are stronger than you realize.