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.
Hey everyone. I had a visit with my hematologist and found out that I will probably be on Warfarin for life. I am really scared of Warfarin and I am freaking out about this.
My story started in February when I had some elective varicose vein surgery status post a phlebitis diagnosis. On March 12, 2012 I was admitted to the hospital and found to have mutliple pulmonary embolisms scattered throughout my lungs, they said it was like a "shower". I was in the hospital for 1 week on heparin until my Warfarin was in therapuetic range 2.0-3.0. I was on the Warfarin for 6 months. I went off of it on September 5, 2012. Two weeks later I came down with a horrible cold that turned in to a sinus infection and bronchitis. I was prescribed antibiotics and thought I was on the mend, though I had a horrible cough. I must also tell you that I have extremely HIGH anxiety and panic attacks. I worry about everything and this has been out of control at times, especially since March. My anxiety and panic attacks often times make me feel like I am suffocating and going to pass out. On September 18, 2012 while walking in to my work, which is about a 10 minute walk, I was really anxious and then started having shortness of breath. I got to my office and decided to go take my pulse ox (I work in a hospital), which was 87. That immediately freaked me out so I went down to the ER. The ER looked at my history and immediately did a CT scan, which showed that my clots were still there, however appeared the same as they were in March. They didn't think they were new clots, but weren't sure. They started me on Fragmin shots and put me back on Warfarin. Everyone seems to agree on only 1 thing and that is they don't know if they are for sure the old clots or if they are new. They compared the CT scan with the previous Scan in March and they appeared the same. My Hematolgist told me today that they should have resolved most of the way or fully by now. However, I have read things that say they can take a long time to fully disappear, like more than a year. My D-dimer is still elevated at .8, however that is way less than it initially was in March. My Hematologist was going to review my scans again today with the radiologist and be in touch. For now I have to stay on the Warfarin and his gut was that probably long term - life time. I am scared of Warfarin, however scared of reoccuring clots. I am trying to get my anxiety under control, but the unknown is making that difficult.
My story started in February when I had some elective varicose vein surgery status post a phlebitis diagnosis. On March 12, 2012 I was admitted to the hospital and found to have mutliple pulmonary embolisms scattered throughout my lungs, they said it was like a "shower". I was in the hospital for 1 week on heparin until my Warfarin was in therapuetic range 2.0-3.0. I was on the Warfarin for 6 months. I went off of it on September 5, 2012. Two weeks later I came down with a horrible cold that turned in to a sinus infection and bronchitis. I was prescribed antibiotics and thought I was on the mend, though I had a horrible cough. I must also tell you that I have extremely HIGH anxiety and panic attacks. I worry about everything and this has been out of control at times, especially since March. My anxiety and panic attacks often times make me feel like I am suffocating and going to pass out. On September 18, 2012 while walking in to my work, which is about a 10 minute walk, I was really anxious and then started having shortness of breath. I got to my office and decided to go take my pulse ox (I work in a hospital), which was 87. That immediately freaked me out so I went down to the ER. The ER looked at my history and immediately did a CT scan, which showed that my clots were still there, however appeared the same as they were in March. They didn't think they were new clots, but weren't sure. They started me on Fragmin shots and put me back on Warfarin. Everyone seems to agree on only 1 thing and that is they don't know if they are for sure the old clots or if they are new. They compared the CT scan with the previous Scan in March and they appeared the same. My Hematolgist told me today that they should have resolved most of the way or fully by now. However, I have read things that say they can take a long time to fully disappear, like more than a year. My D-dimer is still elevated at .8, however that is way less than it initially was in March. My Hematologist was going to review my scans again today with the radiologist and be in touch. For now I have to stay on the Warfarin and his gut was that probably long term - life time. I am scared of Warfarin, however scared of reoccuring clots. I am trying to get my anxiety under control, but the unknown is making that difficult.
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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.
And some people wind up with chronic clots that never go away. I haven't heard this as much with PEs but it happens a fair amount with DVTs. I've had two DVTs (one from 2005 and one from 2009) and they are both still in my leg. However, chronic clots are not a good reason to stay on warfarin. After a certain amount of time (usually within the six months), most clots that don't dissolve will start to solidify and become part of the vein wall. With both of my DVTs, I came off warfarin afterwards.
I'm not sure why you would have to stay on warfarin if they determine that the clots are the original ones. A second clotting incident will often put folks into the "lifer" category, but it hasn't been shown that that is the case with you. I would ask a lot of questions with this.
I'm wondering why you're so scared of warfarin. What are you most worried will happen with it? I think for a lot of us who have repeatedly clotted, warfarin becomes more of a life jacket than a shark. I mean, that doesn't happen overnight and it can be a dangerous drug, but we totally have the power to manage it well and safely.
Also, I hope you're seeing a therapist for your anxiety. It really can get out of control when you've had a major event like this and it can make everything SO much harder to work through. If you're not having good results with your current therapist, I would consider switching for sure. Especially consider someone with experience dealing with folks who have been through a traumatic event.
Please, take a deep breath and settle down a bit. I know it is hard, but at this point you don't know anything concrete. Focusing too much on the maybes is a surefire way to drive yourself nuts. Take care of yourself and let us know how things turn out!
I get that warfarin is a serious drug. All drugs are serious. And if I thought I'd never clot again, I'd not be taking warfarin. But since I don't want to drop dead from a PE, I take it. I take immunosuppressant medication for an autoimmune disease as well, and frankly, that drug scares the crap out of me far more than warfarin ever will.
Colely, I have an autoimmune disease that can make me more prone to clotting as well. I don't know why you think 8.5mgs of warfarin is particularly high. I mean, some people just need more or less to get in range. I'm currently on 13 mgs a day, but it may increase if my INR doesn't go up next blood check because my INR is subtherapeutic this last check. I've been on as much as 15mgs a day. It doesn't matter what dose you ultimately take. What matters is your INR so I wouldn't get too caught up in worrying about the dosage.
Since one of my DVTs was in my arm, my doctor does not want me getting blood draws in that arm any longer. So I have one good arm to work with for blood draws. The veins are pretty scarred up but they can work around that and if I get really sick of it, I can always choose to get a home anticoagulation checker which you use to test your INR at home with a finger prick. Many lifers here use the home INR checker and really like it so that's an option as well.
It's unusual to clot while on warfarin but it can happen, particularly more so if you have a genetic clotting factor. So while there's a remote potential for clotting while on warfarin, the risk for clotting is more so if you don't take it at all, which is why your doc is recommending it
My point to my response is that it's all manageable. It really is. I agree with Toss, it's important to address the anxiety so you can get your mind around things. And I know how difficult it can be to cope if you're dealing with a chronic illness as well. That takes an emotional toll for sure and tapering off pred can throw you into an emotional and mental hell hole. But being on warfarin long term doesn't have to be the end of your world. I've been on it for 5 years, and I live very well. I still do pretty much everything I did prior being on warfarin. It's not a show stopper by any means.
I wish you both the best!