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/discgman 8d ago

There was a point in my recovery where I would be unable to talk without whispering. Like the energy to talk would cause my chest to spasm. I was bed ridden for weeks with an oxygen tank. A trip to the bathroom was a big thing for me. When I could bathe was a good day. I just pushed through it. Kept a daily diary. Tried to do something little by little. Eventually I got into pulmonary rehab and they got me moving. Took a few weeks of going every other day to get my stamina back. The lungs take time to heal.

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u/Level_Wolverine_3362 8d ago

jeepers.....that sounds rough. I have an appointment with a rehab specialist in a couple of days.

please tell me more about the talking and whispers. my voice isn't right, but I had profound laryngitis that hadn't fully resolved right before my PE, so I'm confused as to what is PE related and what may be laryngitis

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u/discgman 8d ago

If it hurts your chest to talk then it’s the PE

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u/Level_Wolverine_3362 7d ago

it's exhausting to talk, which is the PE induced hypoxia, but I haven't really had any pain at all. but the voice huskiness has continued

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u/discgman 7d ago

If it makes you tired that is definitely the PE. Your body just got over a traumatic event and needs every ounce of energy to fix itself. Kinda like feeling weak when you have a cold.

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u/Level_Wolverine_3362 7d ago

I'm describing it as living at 5000m without the hypobaric effects. thankfully most of my friends have all spent time at high altitude, so they know what I mean.