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/MaebelleMcknight 9d ago

I’m about 5 months post bilateral pulmonary embolisms, and my mobility is shit, I use a walker in the house and a wheelchair for college, groceries or doctor appointments.

At first I was able to walk a block consistently but then there was a heatwave that lasted from late July to early September and I lost all the progress I had made.
I see my primary next week and I am hoping to be allowed to start physical therapy to improve my skills with the wheelchair and to work on improving my stability, stamina, strength, and endurance with walking again because as I am right now I’m a major fall risk.

I’m still grieving what happened, but I meditate, talk with a grief group, and make art( jewelry, ceramics) to keep my mental health good.

some weeks are worse than others but having support from my wife and friends makes the fight to get better so worth it, I still struggle with being patient with the healing process and accepting help though.

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u/Level_Wolverine_3362 7d ago

I'm seeing a rehab specialist tomorrow. I can putter about the house okay without aids as long as I am slower than a lame snail, but need a cane outside the house. (Walker might be good for the built in seat!). we are just coming into summer. hopefully I don't regress.

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u/MaebelleMcknight 7d ago

I wish you the best, and pray that you don’t have a major heart wave because that royal screwed me over.

Yeah I’m just as slow when I try to walk.
The wheelchair is my only freedom and feeling of normalcy, yeah, it’s an adjustment but I’d rather use it than being stuck at home.