I cannot give very much positve answers, only to say, for me it is normal, because I am in the same situation, no idea where it came form and scared for that reason, thats why I wrote a post a while back, asking what kind of tests some people got ( an all clear, if you like)I am insisting on a ultrasound of my legs and they will do a lung ct, to ensure clots are gone, I may not find out from where they came, but at least I will know, there are no others there.

I had the same scenario. I had PE's last September and was put on Coumadin for 6 months. They told me they couldn't determine the cause of the clots until I was off the medication. After the 6 months, they ran a bunch of tests and determined that I have anticardiolipin antibody syndrome. I was told that I didn't have to go back on the Coumadin as long as I got checked out regularly and remained aware of symptoms. Well, low and behold, exactly one year after the first PE's, I had a second round of them!

I'm glad I went off the Coumadin for a while so I could find out what caused the clots but it was a risk. Perhaps you could talk to your doc about going off the Coumadin long enough to do some testing and then discussing your options based on the results.

Good luck!

I went off coumadin last week and am thrilled. They don't know how I got the PEs. As soulnik mentioned, I can get the tests done now. If I have a clotting risk, I'll know it.

Five months ago I would have been fearful. Not now. I have knowledge that I didn't have then and that gives me some control over my health and/or care.

I remember what it felt like to not be able to walk a block, to make it up a flight of stairs, to be bent over in pain unable to breathe. Now I'm running long distances almost every day up in the hills where I live, have only intermittent chest pains and they aren't from PEs, and the only time I have trouble breathing, it's from asthma. If I get PEs again, I can deal with it regardless of the outcome. I'm very much aware of my own mortality but that does not scare me. I'm just happy to still be here. I'm determined to enjoy the time I have left.

Life is good!

Todd

Lakota, my Doc told me I too could come off of the Warfarin after 6 months, so the beginning of last November I stopped taking it. (And yes, I was a complete bundle of nerves too)

At the end of November I was able to visit a hematologist, per my doctors request. The hematologist said he recommends people who have only had DVTs to stay on 6 months afterward, however, those who have had PEs, like us, need to stay on for 2 years. He said that studies have shown people who are treated for 2+ years after PE are less like to get another PE. Personally, I'm okay with staying on the Warfarin for life if needed (I have Factor V Leiden).

My suggestion, is visit with a hematologist or a different doctor if you aren't satisfied with the current doctors treatment plan.

Best of luck
Jenn

They believe my PE was caused by BC. I was just taken of coumandin, in a month we test for what I think are 6 different clotting factors. If any of them come back odd I get to see a specialist. He/she will decide if I need to go back on coumandin. I feel very comfortable with this plan. However, if my doctor didn't want the test done....I would be doctor shopping.

im 33 and i had a p.e in july 2010 its unexplained and was on both my lungs (wasnt told how many) however i havent suffered from a dvt as i was told by my doc u only get clots on ur lungs if u have had a dvt. i am warfarin for 6 months and my inr level issupposed 2 b between 2-3 the target was 2.4 i have been level until lately over the last month for some reason my levels are getin worse even tho they upping the dosage it went down 2 1.6 then up to 1.8 back down to 1.6 and then i didnt see my nurse 4 3weeks and fri just gone went i went 2 see my nurse it had gone down 2 1.5! i am gettin worried about comin off the warfarin and if im likely to get it again? as i said there has been no investigation as to why i had them in the first place and i dont think ill be gettin a follow up check either! i also think i had a p.e a cuple of yrs ago i was taken in with pluritic pains i had a positive result from the p.e test but had 2 wait 3 days for a scan but by the time i had my scan there was nuthin there i had felt really bad a cuple of days b4 it then fine the next day so im convinced i had one and it moved!

thank you for your kind replies and experiences! I guess it will be what it is... and worry seems to be such a "normal" or at least the most common experience with PE's.
Jo