Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
I am going on 8 months out from my DVT/PE. I'm no longer taking estrogen. My clots have cleared. Of course I'm still hetero for FVL but I have no idea if I still have Lupus Anticoagulants or Cardiolipin Antibodies.
As I understand it, the Lupus Anticoagulants could have been caused by the estrogen and the Cardiolipin Antibodies could have been the result of an infection. So, I asked my hematologist at my last appointment when we could retest for them to see if maybe we could discuss me going off coumadin in the future. He said he wanted to wait at least a year before going off coumadin to do the LA test. He also said it didn't really matter because even if it was negative I could develop them again at any time. He said in my situation, he felt like the risk of a bleed is heavily outweighed by the risk of reclotting. So, we left it at that.
The next week, I saw my rheumatologist. I thought, I'll try this again and get a different perspective. Basically, he said the same thing and added that if it was him, he would take coumadin for life because the next PE could be fatal.
Anyone else have a similar situation? What are your doctors saying? Are there other questions I should be asking?
Tomorrow, I see my PCP and I can ask about this one more time.
As I understand it, the Lupus Anticoagulants could have been caused by the estrogen and the Cardiolipin Antibodies could have been the result of an infection. So, I asked my hematologist at my last appointment when we could retest for them to see if maybe we could discuss me going off coumadin in the future. He said he wanted to wait at least a year before going off coumadin to do the LA test. He also said it didn't really matter because even if it was negative I could develop them again at any time. He said in my situation, he felt like the risk of a bleed is heavily outweighed by the risk of reclotting. So, we left it at that.
The next week, I saw my rheumatologist. I thought, I'll try this again and get a different perspective. Basically, he said the same thing and added that if it was him, he would take coumadin for life because the next PE could be fatal.
Anyone else have a similar situation? What are your doctors saying? Are there other questions I should be asking?
Tomorrow, I see my PCP and I can ask about this one more time.
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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.
As much as we want to poo poo docs, one thing is for sure- they know PEs are a killer. Anytime I see a new doc and tell them I had PEs, they get this little spooky look on their face and I think it's because they know that so many people don't come out of that.
With that said, I don't know what more you could ask at this point. It really comes down to do you stay on warfarin or not, based on the fact that your blood work possibly shows a risk for future clots . I mean, there's lots of people who are predisposed to clotting and never clot. And then there are people like me who have no clotting factors and still clot. It sure seems like a crap shoot sometimes.
Ok, I've offered you no real advice here. I think you have to go with your gut based on all the information you know.
But, after my PEs in January (with NO cause that we can come up with) I'm more content staying on the warfarin because it seems easier than continually stressing about whether I'm throwing more clots. I've also had two complete genetic panels done and I'm negative for everything too. At this point, staying on is the better choice for me, but that wasn't true in the past.
Rmb is right ... it really is a crap shoot and sometimes you just have to make a decision that you know you can live with.