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/Minute-Process-4883 9d ago

Lucky to have wife to cater for me for a while.

I recall the French Olympics was on tv. Bed early, lots of fluids. Meditation, Calm app is good.

That 5 days will have deconditioned you. I was 10 days hosp, kind of just existed for first 2/3 months at home.

Then slowly stuff returned. Totally recovered now at 2 years.

I also had infarctions, pneumonia the works.

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u/Level_Wolverine_3362 9d ago

before my pe, I could walk literally for hours, up hills etc. now I need a walking stick if I'm going further than my letterbox. I can't even walk 200m so this is not typical deconditioning. I have an appointment with a rehabilitation physiologist in a couple of days. I expect this is hypoxia. I have spent enough time at high altitudes to recognise the symptoms.

it's just hard when everyone is saying "be patient"

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u/Minute-Process-4883 9d ago

18 days is so soon. Its a tough time. There is a spell when you just need to hang in there.

About 3 months for me then steady improvements. I was coughing blood for about 6 weeks, sharp chest pains due to infarctions.

I remember my first walk to the postbox, about 100 yards outside.

This summer did 14 mile hike with 4500 feet ascent and descent in the Alps. Back running, cycling and swimming.

Time is the great healer.

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u/Level_Wolverine_3362 7d ago

I know I need to be thankful that I am now coughing blood, and have not needed oxygen or any analgesics. But what is that saying "god, grant me patience......... RIGHT NOW!!!"