Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi, my name is Calista and I just had my second massive PE! The first one was 6 years ago and it was very bad! I broke my ankle and a week later was unconscious on the floor. I stayed on Coumadin for a year and the doctors chopped it up to be the fracture and birth control.
This time I had my gallbladder removed and had huge blood clots in my lungs a week later! I have no genetic risk factors and no family history! I am freaked out and scared that one day this will kill me! Because it's "unexplained" the want me on Coumadin forever! I'm scared that this keeps happening anytime I have any trauma! :( :( I sure could use someone to talk too!
This time I had my gallbladder removed and had huge blood clots in my lungs a week later! I have no genetic risk factors and no family history! I am freaked out and scared that one day this will kill me! Because it's "unexplained" the want me on Coumadin forever! I'm scared that this keeps happening anytime I have any trauma! :( :( I sure could use someone to talk too!
Have you actually been tested for genetic and acquired thrombophilia or have your Drs just taken your family and medical history? My Dr believes this was my 2nd PE since my 2005 scans have been reviewed. And I was referred to a hematologist to investigate thrombophilia.
Being on coumadin forever does sound scary but there are many people on this forum in that situation that can be a support for you as you get used to the idea. I hope you have a speedy recovery:)
I've had three clotting incidents. DVTs in 2005 and 2009 and multiple bilateral PEs in January of 2010. I'm a lifer on warfarin and (at this point) much happier on it than off! In your case, I think I would be too, although it really is a personal decision. I'd rather deal with bleeding issues someday than more clots now!
So, I became a lifer at age 35. I also have no genetic factors (I've been tested twice) and no family history. They told me when I got my PEs that I might have something that we just can't test for yet! They're making new discoveries every day with regard to clotting, so maybe folks like you and me will get answers in the next decade or so.
Anyway ... I'm surprised they weren't more cautious after your surgery to put you on thinners (at least injections!) for a while, especially considering your history.
I imagine your anxiety is high right now, and can totally understand. I was a mess and I only had PEs once. Hard to imagine twice!
Hang in there! We're a friendly bunch, so read around and ask questions and so on. Hopefully, you'll find some support. Nobody should have to deal with clots on their own.
Keep us posted on how you're doing!
Being scared is normal, for the stage you're in. But when you realize that it's 'just' (NOT downplaying it!) a chronic condition that is very treatable perhaps you'll be able to stop worrying so much.
I'm a lifer on Coumadin. Do I like that? No.
But what if you had diabetes? You'd also be on a medication probably for the rest of your life.
This is the place to vent about how scared you are, so don't hold back.