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 multiple PEs in March 2012. I was told i could go off my Warfarin after six months. In September I was off for one week and freaked out because I thought I was having more PEs. I went to the ER and they re-scanned me and my clots were all still there. It was felt that the clots are still the same clots from March and have not resolved. I am back on Warfarin again and have to have another scan in March 2013 to see if they have resolved. I am getting the feeling I will be on lifetime Warfarin and the clots will be there forever. Has anyone else had a similar situation. Did your clots resolve?
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Not everyone is re-scanned after diagnosis, so it is kind of impossible to say how many people are out there with chronic PEs in their lungs. I know there was one gal on these groups who had her PEs take more than two years to dissolve, but they finally did.
Just because the clots are there doesn't mean that you would have to become a warfarin lifer. Some docs are cautious and will keep you on the warfarin if the clots are there, but many will take you off at six months regardless. If the clots are still there at that point, I don't know what the issue would be with coming off warfarin. They shouldn't be causing you any danger and the warfarin doesn't help dissolve them ... your body has to do that.
Different doctors can take different approaches and it may vary depending on the doctor, on your particular case, or on your history. No one can make you take warfarin for life ... so make sure you ask lots of questions and you're comfortable with the recommendations your docs are making.
Hang in there!
I had my PE blocking several arteries in May 2012 and just had my 6 month appointment with the consultant the other day. I'm still getting lots of problems like shortness of breath, a cough, tiredness and chest pains which seem to be getting worse etc. He offered that to do another CT scan again just to check what's going on and for me to stay on the warfarin for now. I'm convinced that there's something still there but should know for sure once I have the scan.
I probably had the clots about a year before being diagnosed which probably hasn't heped. What symptoms did you have when you were off the warfarin for the week? I had particularly bad chest pains the last couple of weeks and then it turned out my INR was very low so not sure if it that was connected.
Will have my fingers crossed for you that the clots do dissolve. I think most people think after a PE you're ok again just like that and don't realise what we go through.