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 everyone
Nice to meet you guys.
About a month ago I was diagnosed with segmental pulmonary embolism. I was in the hospital for 2 nights because my oxygen saturation was very low. I have been taking rivaroxaban and my doctor has told me to take it for at least 3 months. It has been a very frustrating situation because they have not been able to find the reason for my pulmonary embolism. Therefore it has been diagnosed as unprovoked pulmonary embolism. My fear is the recurrence of the condition. I am really fearful if there will be a massive pulmonary emboli which is much more dangerous. Has anyone else had similar experience with a similar situation?
I appreciate it so very much
Nice to meet you guys.
About a month ago I was diagnosed with segmental pulmonary embolism. I was in the hospital for 2 nights because my oxygen saturation was very low. I have been taking rivaroxaban and my doctor has told me to take it for at least 3 months. It has been a very frustrating situation because they have not been able to find the reason for my pulmonary embolism. Therefore it has been diagnosed as unprovoked pulmonary embolism. My fear is the recurrence of the condition. I am really fearful if there will be a massive pulmonary emboli which is much more dangerous. Has anyone else had similar experience with a similar situation?
I appreciate it so very much
I read a study a few years ago that said about a third of PEs are considered unprovoked, so your situation isn't really unusual. It can be frustrating, to be sure, but I think you'll find a lot of folks on these boards that fall into the category of "unprovoked."
I don't know if you've had the genetic testing, or if they've discussed it with you. It might be something to look into, although they often don't do the testing until after a second clotting event. You might also want an appointment with a hematologist to see if they have suggestions.
It can be really scary to have PEs and to feel like there's nothing you can do to prevent another reoccurrence. If the anxiety is starting to take over your life, definitely deal with that separately and aggressively.
Hang in there!
I had genetic testing done for Factor V Lediden and Prothrombin mutation as well as cardiolipin Glycoprotein B level and all came back negative. These were done by a hematologist.
You mentioned you had multiple PEs Can I ask how far apart in time were your PEs? Did they recur while you were on anticoagulation? How are you doing now?
thank you :-)
My first DVT was in 2005. It was blamed on birth control. I came off anticoagulation after six months.
My second DVT was in 2009. It was blamed on a different type of birth control. I was tested for all clotting disorders and was negative on everything. I came off anticoagulation after six months.
My PEs were in 2010. They were unprovoked. I have been on warfarin since then and have not had further clotting.
It's been almost six years since the PEs and I'd say I've been back to normal for quite a while now.
I will note that most people don't reclot. There's a lot of us weird multi-clotters on these boards. People who only clotted once ... they're not hanging around here much past their treatment time. Hopefully, that'll be the case for you too.