I went to a pulmonologist and had him review all my CT scans, MRI's and blood tests. He nor any of my other doctors can link any of my PE's to any specific thing. My Pulmonologist recommends I stay on Coumadin for life just for that reason, they were unprovoked, and even though I respond well to treatment and the clots seem to be small he feels I probably wouldn't be so lucky next time.
Get a second opinion and go prepared with copies of all you x-rays, cat scans, MRI's and any other tests that have been done.

Hi

I have been told that one unprovoked PE IS an indication for life long anticoagulants.

Think I have posted this before but this comes from the American College of Chest Physicians. They are only guidelines but it recommends that if there are no other bleeding risks Eg low platelets, and if there is good INR monitoring that life long treatment should be considered.

Added to that you have a genetic cause as well I would think that life long is what you should consider.

I am in the UK but my consultant uses the ACCP guidelines which he says are followed by most countries worldwide.

Hope this helps

Kate x

I had a DVT / PE in 2007. My doc thought it was from BC pills since I had no genetic clotting issues and no other risk factors. I was on warfarin for 6 months.

Six weeks after coming off warfarin, I developed another DVT. New round of genetic testing and again, no genetic clotting issues. Because I've have two separate episodes of clotting, my Hematologist recommended I stay on warfarin for life. Note I would not consider my Hematologist to be conservative. He's always telling me not to worry about stuff.

RetiredNavy02, who's a member of the DVT/PE community, has a lot of good data on this type of stuff. He might be able to provide you info.

Here's a link you might be interested in.
http://www.fvleiden.org/ask/09.html
I would get a second opinion. I was told I could come off of coumadin by a hematogist two years ago and I've reclotted ON coumadin twice since then. Now I'm a lifer on Lovenox.
Good luck!
Take care,
Barb

Hi.... I'm a 2 timer mutiple pulmonary emboli girl too. Fisrt time late 2004 from a clot in my arm which they felt was linked to infection from mosquito bite - 3 months on warfarin and then OK but a series of health issues. I was diagnosed hypothyroid, lost my mum, hit the menopause and then 3 dental extractions and a clot in leg folowed swiftly by PE's in July 2007. I'm sure the dental extraction triggered the clotting cascade but also wonder about the links with hormones. DVT's very closely associated with pregnancy and there are a lot of 40+ ladies about, the other thing is the thyroid issues - has been mentioned to me about sticky blood??? Anyway I'm lifelong on warfarin now in the UK also have prothrombin factor II and told no choice altho they like my level high 3.0 - 3.5 I'd like it slightly lower I think, but is difficult getting referral back to haematologist here. Also told I amight not be so lucky a third time and on balance think I agree so I keep taking the tablets x

Three primary care physicians told me I should be a lifer, but my hematologist wants to take me off in March... I'll be in your same position then.

One thing I would point out that's come up a few times already is that none of us are likely to *actually* be lifers. The pill form of lovenox - no blood monitoring! - is going to come out soon. I don't know... I have to hope that at 31, I have a few years ahead of me soon and they'll find a way to get us newer, better treatment.

Rat poison no more!

I on it for life. I had one PE. They also found out that I have Protien S Deficancy. I think that even if my number wasn't as low as it is I would still want to be on it for life just for my peace of mind. I know that you can still clot while on warfarin, but I like knowing that my chances are lower while on the meds.

I think that since you've had 2 clots and a clotting disorder you should probably be on it for life. Unless of course your hemotologist wants to kill you that is.

Thanks to all for your comments.
Your last line made me laugh, Alicia.

Nemtynakht, yes...I put "for life" and "lifers" in quotes (I did so in my original post) for that very reason. I have great hope for medical science during my lifetime! Thanks for that reminder to all that we won't have to stick with the rat poison.

Hey Beecute,

From reading all you have experienced - i'm so surprised that you have not been told that you will be on warfarin for life.

I suffered a massive and multiple PE last March, and have since been told that I am incredibly lucky to be alive. It caused my heart to become severely impaired.

Because of the "extensive" nature of my PE's, my consultant has recommended that i stay on warfarin for life. He said that was policy - that those who suffer a massive PE should remain on warfarin...(not sure whether that is his policy, my hospital policy, or a UK policy!)

No one still seems sure what caused my PE...they have said that it may of been the pill, but all the doctors seem to think that was most definately not the only contributing factor to my clotting, as i was on the pill for 6 years before i fell ill. I have had some genetic testing, which so far seems inconclusive...but it seems that now i have been told that i will be on warfarin for life - no one seems that bothered whether i have a genetic condition or not - as it'd be the same treatment!

Hope that helps you x