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.
I had my PE in Feb 2014. Unexplained, no idea why I had it.
My hematologist had me get a ct scan in June - clots were gone.
While on warfarin, I had some chest pain, freaked out and went to ER. It wasn't a clot.
I went off the warfarin in Feb 2015.
I am so terrified. I want to go back on it.
I started having some tightness in the chest last week. Not much pain, just "not right". It was a crazy time, we had guests, I figured I was freaking out. So I didn't go to the hospital (which would be the right thing to do). Instead, I took some xarelto (which I had because they put me on it originally, but hematologist moved me to warfarin because it was her preference, I could attempt to nurse on warfarin and I could actually afford it.)
But I went to my GP today. She sent me to have a d-dimer done (and an EKG, cardiac enzymes and the hospital felt a chest xray was necessary). The d-dimer came back fine. So 95% chance it's not a clot.
But I still feel it in my chest. So what if it is a clot? Is the xarelto I'm taking now going to protect me? That's my hope - and honestly maybe the only thing keeping me from going insane right this minute. I will call the hematologist tomorrow (since I started taking the xarelto on my own) and I know my GP will call me. Guess I'll be asking her about anxiety medication. (But I never felt like this on warfarin - even the other freak out on warfarin wasn't as bad as this and warfarin IS cheaper than anxiety meds) Is there a downside to being on warfarin forever? I just don't think I can handle this. Should I push for yet another chest ct scan?
My hematologist had me get a ct scan in June - clots were gone.
While on warfarin, I had some chest pain, freaked out and went to ER. It wasn't a clot.
I went off the warfarin in Feb 2015.
I am so terrified. I want to go back on it.
I started having some tightness in the chest last week. Not much pain, just "not right". It was a crazy time, we had guests, I figured I was freaking out. So I didn't go to the hospital (which would be the right thing to do). Instead, I took some xarelto (which I had because they put me on it originally, but hematologist moved me to warfarin because it was her preference, I could attempt to nurse on warfarin and I could actually afford it.)
But I went to my GP today. She sent me to have a d-dimer done (and an EKG, cardiac enzymes and the hospital felt a chest xray was necessary). The d-dimer came back fine. So 95% chance it's not a clot.
But I still feel it in my chest. So what if it is a clot? Is the xarelto I'm taking now going to protect me? That's my hope - and honestly maybe the only thing keeping me from going insane right this minute. I will call the hematologist tomorrow (since I started taking the xarelto on my own) and I know my GP will call me. Guess I'll be asking her about anxiety medication. (But I never felt like this on warfarin - even the other freak out on warfarin wasn't as bad as this and warfarin IS cheaper than anxiety meds) Is there a downside to being on warfarin forever? I just don't think I can handle this. Should I push for yet another chest ct scan?
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
What does your GP think is causing the chest pain? My PEs were over 7 years ago and I still get random chest and back pain. Usually it's when my allergies are acting up which they are now. But sometimes it's just out of the blue. I'm no doctor of course, but I suspect too the anxiety and stress is part of the equation; that alone can cause chest discomfort.
I would get serious about addressing the anxiety, whether that means meds, or counseling or some other techniques. I had very bad anxiety the first few months after my PE and it felt horrible. I constantly felt like I was having another PE or a heart attack. There's no reason to put up with that.
The downside to being on any anticoagulant long terms is bleeding. And there's some information that long term warfarin use can cause bone density loss. And then there's just the fact that if you don't need to take a medication, why take it.
I'm on warfarin long term and if I could come of it, I would. I was off warfarin briefly after my first clot and went back on it long term after my second clot, per my hema's recommendation. If I could go off it, I would, in a second. I don't want to be on any anticoagulants. But my risk for clotting is greater than my need to not be on it, so I take it. I am fine and it's manageable, but it just would be nice not to have to be on it.
If it were me, I'd want to calculate my risks for clots more definitively before staying on warfarin long term. But that's me. Ultimately you have to do what feels comfortable for you but try not to make those decisions in the heat of anxiety or panic.
Stephanie