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 apologize in advance because this is going to be lengthy. There's a lot of info and it gets confusing.
I'm just over 5 months out from my PE now. I have about 3 weeks left on my Xarelto prescription so I saw the hematologist last week to reassess things. He was very much on the fence about whether or not to keep me on the blood thinners. He is considering long term because my clots were very large in light of seemingly insignificant or minor precipitating events (stomach "illness"/dehydration then long car travel). Obviously, there is no guarantee that I would not clot again or that I would survive another clot. Then again, I've been having awful periods on the Xarelto. I lose at least a day or two each month because the bleeding is so severe I pretty much stain everything near me those days and can't leave the house. The doctor mentioned that if I become anemic due to the blood loss, that is a reason to consider stopping the Xarelto. The first two months I was tested for anemia, which was negative, but this time after my appointment I had a CBC which showed anemia (while I'm taking a women's multivitamin with iron). Further testing showed it was anemia due to blood loss so I now have to add ferrous sulfate (an iron supplement) twice daily until I am rechecked in 6 weeks.
If I stay on the blood thinners, my options for dealing with the anemia are 1) Mirena IUD or 2) endometrial ablation. I'm not comfortable with the Mirena because, even though it's very very minor, I'm just not ok with accepting any increase risk of clotting. An endometrial ablation would mean infertility for me (I'm 31 years old with one child) and my husband and I just aren't sure if we're done having kids.
If I stay on the blood thinners, there is also the decision to remain with Xarelto or switch to Coumadin. As I type this, another commercial for Xarelto lawsuits just came on the TV... I'm uncomfortable considering taking this new drug for the long term, which I'm praying is at least 40 more years! There just isn't the history to make me feel hugely comfortable about it and the lack of a common, accepted antidote concerns me. I'm ok at home because I live in a large city and have top notch hospitals at my disposal but when we travel I would not feel nearly as comfortable with the ability to treat any accidents or surprises. Coumadin is much more widely known and has a very well known and understood antidote so treatment would be realistic no matter where I am.
Then there is the option to stop the blood thinners altogether. Of course, the risk there is that I will reclot again. I did mention my suspicion of possible undiagnosed Crohn's disease as a possible contributor to my PE as I was recovering from what would be considered a "flare" when I clotted. But, given my young age and the fact that I've only had 2 "flares" in a 4 month span means there isn't yet sufficient reason for a colonoscopy for me. That's according to both my hematologist and my PCP.
So I'm at a point where I just simply don't know what to do. There are no right answers in this. Each option comes with risks. I don't know which risks are the right ones to accept. Initially, my reaction was to stay on the blood thinners. I'm a cautious person by nature and I viewed it as a seat belt of sorts. In case there's an accident it could save my life, although there's a slight chance it could do more damage and also a chance that I might not need them at all.
But then I think about the horrible periods I have and the fear I have of daily activities. I'm so careful to watch were I'm walking so I don't trip, I step so slowly into the shower so I don't fall, I've avoided making the drive up to my parents' house because I'm worried about getting in a car accident or having some injury up there (small town), etc.etc. To be free of that anxiety would be incredible. Also, in a way I think I would feel a little more in control if I got off the thinners. Now that I understand my risk I can do things in my daily life to try to reduce those risks. With the medication, I'm sort of at their mercy and am somewhat powerless should something happen like severe internal bleeding. I understand there are still no guarantees either way.
I guess I just wanted to run this past people with more experience on the subject. What are your thoughts? I've had the blood tests done and found no genetic or other reason to be clotting, other than my suspicion of Crohn's disease or some other IBD.
I'm just over 5 months out from my PE now. I have about 3 weeks left on my Xarelto prescription so I saw the hematologist last week to reassess things. He was very much on the fence about whether or not to keep me on the blood thinners. He is considering long term because my clots were very large in light of seemingly insignificant or minor precipitating events (stomach "illness"/dehydration then long car travel). Obviously, there is no guarantee that I would not clot again or that I would survive another clot. Then again, I've been having awful periods on the Xarelto. I lose at least a day or two each month because the bleeding is so severe I pretty much stain everything near me those days and can't leave the house. The doctor mentioned that if I become anemic due to the blood loss, that is a reason to consider stopping the Xarelto. The first two months I was tested for anemia, which was negative, but this time after my appointment I had a CBC which showed anemia (while I'm taking a women's multivitamin with iron). Further testing showed it was anemia due to blood loss so I now have to add ferrous sulfate (an iron supplement) twice daily until I am rechecked in 6 weeks.
If I stay on the blood thinners, my options for dealing with the anemia are 1) Mirena IUD or 2) endometrial ablation. I'm not comfortable with the Mirena because, even though it's very very minor, I'm just not ok with accepting any increase risk of clotting. An endometrial ablation would mean infertility for me (I'm 31 years old with one child) and my husband and I just aren't sure if we're done having kids.
If I stay on the blood thinners, there is also the decision to remain with Xarelto or switch to Coumadin. As I type this, another commercial for Xarelto lawsuits just came on the TV... I'm uncomfortable considering taking this new drug for the long term, which I'm praying is at least 40 more years! There just isn't the history to make me feel hugely comfortable about it and the lack of a common, accepted antidote concerns me. I'm ok at home because I live in a large city and have top notch hospitals at my disposal but when we travel I would not feel nearly as comfortable with the ability to treat any accidents or surprises. Coumadin is much more widely known and has a very well known and understood antidote so treatment would be realistic no matter where I am.
Then there is the option to stop the blood thinners altogether. Of course, the risk there is that I will reclot again. I did mention my suspicion of possible undiagnosed Crohn's disease as a possible contributor to my PE as I was recovering from what would be considered a "flare" when I clotted. But, given my young age and the fact that I've only had 2 "flares" in a 4 month span means there isn't yet sufficient reason for a colonoscopy for me. That's according to both my hematologist and my PCP.
So I'm at a point where I just simply don't know what to do. There are no right answers in this. Each option comes with risks. I don't know which risks are the right ones to accept. Initially, my reaction was to stay on the blood thinners. I'm a cautious person by nature and I viewed it as a seat belt of sorts. In case there's an accident it could save my life, although there's a slight chance it could do more damage and also a chance that I might not need them at all.
But then I think about the horrible periods I have and the fear I have of daily activities. I'm so careful to watch were I'm walking so I don't trip, I step so slowly into the shower so I don't fall, I've avoided making the drive up to my parents' house because I'm worried about getting in a car accident or having some injury up there (small town), etc.etc. To be free of that anxiety would be incredible. Also, in a way I think I would feel a little more in control if I got off the thinners. Now that I understand my risk I can do things in my daily life to try to reduce those risks. With the medication, I'm sort of at their mercy and am somewhat powerless should something happen like severe internal bleeding. I understand there are still no guarantees either way.
I guess I just wanted to run this past people with more experience on the subject. What are your thoughts? I've had the blood tests done and found no genetic or other reason to be clotting, other than my suspicion of Crohn's disease or some other IBD.
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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.
Couple of thoughts.
I'm a lifer on warfarin. The worry and careful nature of doing daily tasks for fear of hurting yourself eases overtime. Once you're a lifer, it occurs to you that it's not sensible or even doable for the long haul to live in a bubble. So in a way, being a lifer frees you a bit. There are very few things I won't do and I just really don't think of it that much anymore. I guess I think about how few times I've ever actually hurt myself or been in accidents over the years before I was on warfarin and I see no reason to assume I'm suddenly going to be accident prone merely because I'm on warfarin. Of course as I age, the risks increase but I mean, what can you do except be reasonably careful without feeling like you're fragile.
There's a risk to everything, being on anticoagulants, being off anticoagulants. So it's a matter of assessing the risks and determining the risk that seams the most reasonable to YOU. Because you're right, there's no right or wrong answer. Too, it's not a decision you need to make today. I think stepping away from trying to figure it out for a bit can give you some clarity.
The good in all of this is that you have the power to decide and therefore really are in control, even if it doesn't feel like it.
Oh, also... if you suspect Crohn's, consider seeing a GI doc and see what he thinks (I have UC). If you have IBD, that doesn't mean they automatically recommend lifelong anticoagulation but just that you have a greater risk for clots than someone who doesn't have IBD.
I didn't have any particular reason for the clot(s) and they were massive (large/lots) and they recurred when I stopped after 6 months. I was a bit angry about this at the time (there was a difference in opinion whether I should stop, not surprisingly), but I knew what was happening the 2nd time because the symptoms were fairly similar to the 1st and caught it much earlier. Certainly, be vigilant if/when you stop but don't let it rule your life.
It is good to remember that life long treatment doesn't necessarily mean I have to stop my life. Every option just feels so overwhelming right now. But it's true, the beauty of this is I don't have to decide this second. My hema seems very open to whatever I'm comfortable with because there really is no right answer here. That's just a big decision to make.