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 received clearance from my hematologist today to come off Xarelto after 6 months of usage. My first round of genetic tests came back negative, and I'll get the Lupus Anticoagulant test when I go back in Feb.
Decided to stop taking it tomorrow (fresh break for the New Year). She wants me to take 81 mg baby aspirin and then do a follow-up d-dimer in one month.
Although my breathing/lungs feel really good, I've been experiencing various physical symptoms that are likely related to new menopausal type hormonal fluctuations (off BC as of the PE in June), and high stress/anxiety levels. Digestive, back aches, and one very bad episode that left me trembling with chills -- probably a severe panic attack as all else has checked out fine.
My question to any of you who have come off this (or similar) PE medication: how did it go? I'm a bit anxious about losing the medication safety net, but very much looking forward to moving on from the PE crisis I endured this year.
I recognize there's no probably no way to definitively know what caused my PE, but I'm fairly sure it was a hard fall walking up an escalator coupled with the fact that I was on birth control. My only risk factor now appears to be my weight, which I will be trying hard to resolve.
Any shared experiences or advice would be greatly appreciated.
Decided to stop taking it tomorrow (fresh break for the New Year). She wants me to take 81 mg baby aspirin and then do a follow-up d-dimer in one month.
Although my breathing/lungs feel really good, I've been experiencing various physical symptoms that are likely related to new menopausal type hormonal fluctuations (off BC as of the PE in June), and high stress/anxiety levels. Digestive, back aches, and one very bad episode that left me trembling with chills -- probably a severe panic attack as all else has checked out fine.
My question to any of you who have come off this (or similar) PE medication: how did it go? I'm a bit anxious about losing the medication safety net, but very much looking forward to moving on from the PE crisis I endured this year.
I recognize there's no probably no way to definitively know what caused my PE, but I'm fairly sure it was a hard fall walking up an escalator coupled with the fact that I was on birth control. My only risk factor now appears to be my weight, which I will be trying hard to resolve.
Any shared experiences or advice would be greatly appreciated.
My doctor sat me on Xarelto for 6 months and a follow up right after. I did so but when I went to the follow up I found out that they have sat my appointment with the wrong doctor. So he did not know what to do except that he told me to go for another 6 months and see my doctor in the mean time.
I was angry about this mistake so I decided to be my own doctor which is wrong. I stayed for the extra 6 months and I went off Xarelto myself and did not go for any follow ups. Now I am 2 years after I had it and everything is going well.
I feel like the anxiety gets the best of me sometimes. I guess I'm afraid that I will misinterpret symptoms and get hit with another PE situation. Trying not to overreact over every little thing.
For the first year I was really nervous and ended up going to emergency twice thinking that the PE was back. I believe that I had ignored my original PE symptoms for months before being diagnosed, so I was determined not to make the same mistake a second time. Both times it ended up not being anything, but I appreciated the peace of mind that came with getting it checked.
Two years later, I really don't think about the PE much at all. I am more aware of it as a possibility and hope that I will be more careful about symptoms if they show up, but I feel as well as I did before and the anxiety about a recurrence is finally entirely gone.