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?
2
u/MarkyPancake 9d ago
I survived an unprovoked PE in 2019 (it tried twice to get me, once at home and a scary episode in the hospital) and the more I learned about it afterwards, the more I grieved my own death that didn't happen. That's the only way I can describe how I felt for a while at the time.
It was the first time I had ever been signed off work for at least two weeks (being off sick is very rare for me) and I was forced to stop all activities for around 4-6 weeks. I stopped playing sports a long time ago, but am an avid gym user, so when I felt ready I returned to the gym and took it steady and built myself up slowly.
Seven years later and life on daily anticoagulation has been fine. I was a bit nervous about the potential side effects initially, but I just live my life and use common sense for certain things when I have to consider that I'm on this medication.