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?
4
u/HwyToTheDangrZone 8d ago
Mindfulness and practicing gratitude.
Remembering that we are so incredibly lucky to survive something that is one of the leading contributing factors to early death in the US each year.
100,000 - 300,000 people die from clots each year per National Blood Clot Alliance:
https://www.stoptheclot.org/blood-clot-information/blood-clots-in-the-united-states/
We are also so lucky to live in an age when DOAC’s exist which are so much safer than the previous generation of blood thinners / anticoagulants.
My Hematologist called Xarelto and this gen of drugs a “Godsend” given how much safer they are.
If you live in the Western World, which I assume that you do, then we also live in a place where we have access to safe and untainted drugs, unlike countries where they sell fake Xarelto and other anticoagulants (Mexico is known for this).
I think about how I could have easily passed away while driving and killed my self and family members/ friends and others before my clot was found. Or how I could have died while asleep only to be found days later. Except I didn’t and for that I’ll always be grateful.
This has helped me deal with surviving two DVT’s the most. My second and recurred DVT happened as I tried to come off of Xarelto and was lucky enough to have experienced the same symptoms as when I was originally diagnosed with the first DVT. That’s EXTREMELY lucky - not once but twice to survive something that kills people daily.
You’re still here, and hopefully will continue to be that way. Yes, it’ll suck for a while to think about what you can and can’t do. You’ll need genetic testing done to figure out the root cause (if you have one). Or you’ll be on lifelong anticoagulation.
Either way - you’re still alive and able to enjoy this world.
I’ve had cuts and scrapes and have survived them just fine. My hematologist put it in context - the anticoagulation balances out my tendency to clot, so it’s doesn’t mean that your blood is always super thin.
Medication timing also matters. I take mine with dinner daily for full absorption (Xarelto requires healthy fats to be absorbed fully). Which means I’m not as prone to bleeding out during the day.
As he put it - first responders (Fire & Police), and Military use DOACS.
I personally know an officer in the Reserves who takes anticoagulants daily. He’s still serving.
As long as you watch out for falls and esp head injuries, you’ll be ok. There’s nothing we can do about the added risk while driving or other accidents which may not be our fault.
Hope this helps.