Sounds so frustrating...but so good to know that there are doctors taking good care of you. I was taking Yaz so had one factor that could have caused my PE, but I also have a family history---mom had a PE, uncle had a DVT, and grandmother had clotting issues--so I often wonder if I will take warfarin for the long term as well. The really great news, however, is that there are a few drugs in stage 3 clinical trials that show real promise in replacing warfarin. We may be lucky enough to be able to take another less troublesome drug in the near future.

Take care :)

oooo Kate, i'm so sorry to hear this! But like hopper said, it sounds as though you have a really good dr who is taking care of you! the thought of being on warfarin for the rest of your life is rubbish - but i guess, at the same time, it is comforting to know that you are unlikely to clot again! i too, have been told that i will be on warfarin for life - not because i have any genetic factors, as far as they can tell...but because of the extent of the clots!? strange hey, but i dont mind if its going to stop me from getting that poorly again! hope you are feeling happier soon x

Hey Kate,

It's so confusing this PE business at times. Sometimes the treatment you get really depends on the Dr's own knowledge/opinion's on the subject and it sounds in your case that you have got a good one - hold on to him - I may need to holiday in your city and then pay a visit to the local A and E to meet him!!!

I am happy to be off the medicine, but I have done a lot of thinking on the subject and think there are advantages to both being on or off it. I think when it is most difficult is when you don't know either way whether you're on it for life or not. I may have to be on it in the future and if this is the case then I intend to take my Warfarin at night or first thingin the morming so that I get it out of the way and I also would drink alcohol when I wanted (in moderation but that is a good thing).

I think it is at this time that I am most obsessed with meds etc., but I think once I know a decision either way that I have to live with it and make it not take over my life (easier said than done I know).

What was the extent of your clots? I am impressed that the NHS worked out an extent - sorry to be negative again about the NHS, but you know my thinking on this - lol - I just seem to get very limted info and just feel they say little to me because they know little. Good luck tomorrow. x x x

Hi Dawn! Though I have no experience with NHS, you'll find the same here in the states - you either find really good,knowledgable docs or complete dough-heads on the clotting/warfarin subject.

I'm FVLx2, so at a high risk for future clots, yet I'm told that I could go off warfarin in 6 months and if I have a 2nd clot, then it would be warfarin for life. It all boils down to how much of a risk taker I am, and how ez it is to comply and make the lifestyle changes required to stay on warfarin safely for the long term.

Well, I'm leaning toward staying on warfarin because I'm not a gambler (that 2nd clot could be the last, y'know?)I do still have my cocktails in moderation, and I don't plan on taking up any risky new hobbies or careers (I gave up my dream of being a rodeo clown long ago...) that would put me in danger of bleeding.

You may want to check with Tom (RetiredNavy) about his long term warfarin use, and the low dose warfarin he's on (part of the PREVENT study - tom's a good guinea pig).

hey Lauralu, you really made me laugh about the dough-heads comment. I think I need some good words like that for when I go to my appointments because I often feel dispondent and think it's me and not them - so I guess next time I get someone who treats me badly I will repeat mantra 'this is just a doughhead, take no notice' until I find a good medical profession (I have seen a couple out there).

Don't write off your rodeo clown dream - perhaps you could manage a rodeo clown team??? I don't know much about rodeo clowns to say whether this is possible, but you never know.

Thanks for the laugh x x x x

P.S I also think that the decision to stay on Warfarin for life is about whether or not to take the risks - which is so mind-boggling - how are we meant to make such an important decision, especially when some of us are not making informed choices because we don't feel informed (apart from this group).

I have been told that even if my bloods come back with a clotting disorder that I still might not be put on meds for life - at first I was happy about this, but then I thought - but I am risking my life for a "lets wait and see if you clot again" attitude. I really don't know what to think, but I suppose I am going to go with the risk and not go on W for life (I honestly don't know if this is the right decision), but I guess that is the way all my Drs are guiding me and I have to trust them somewhat - as they're the medical professionals???? I hope they are not famous last words.

Hey, I might become a rodeo clown - what qualifications do I need?

Hi Guys

So many thanks for your replies. It is 5.30 am and woke up crying at 4 am with the hugeness of it all. So came on here and the replies have really helped the tears!

Thanks hopper for helping me see that is a positive thing that I have found a really great doctor.

I contacted him after I was taken off the warfarin to see if there was an alterntive anticoagulant I could take should the need arise. He is based in a big regional centre and offered me an appointment to discuss it further so it went from there really. He knows my local haematologist and is going to write to him and explain so there will be no treading on toes!

Guess hearing from this doctor who has such huge experience that my PEs should be treated as the more serious one was I bit of a shock and has only really hit me this morning.

Dawn I got a copy of the CT scan report and it had many clots in all areas of both lungs so I guess that is what they mean by extensive. If you are ever this way I can direct you to the relevant A/E!!

Robyne it sounds like they are doing a similar thing with you basing your treatment on the extent of the clots alone. From what I hear and as hopper pointed out there are a number of new drugs in the pipeline and I have been told I could swap to them when they become available. Much less restrictive in terms of diet etc and no INR testing Yipee.

Thanks also Laura. There is a big study in the UK into these alternatives so we should thank those taking part on our behalf I guess. I certainly would if my doctors were participating in it.

Thanks all again for replies and reading my early morning ramble! Think it is going to be a pretty tearful day especially when I have to do first clexane injection! Tissues at the ready!

Kate x

Hey Kate,

Bless you - it really is tough! Last week was the first week that i really realised the reality of what happened to me, and i cried all day for 3 days! it's a horrible feeling knowing what could of happened, but i am also now realising just how lucky i am to be here - as are you! i have no doubt that it was extremely tough for you to hear what you did - but take comfort in the fact that they are looking after you, and doing their very best to ensure that you are not in that situation again! it does sound like our doctors are thinking along similar lines! although i was on the pill at the time of my clots - it seems my drs are not satisfied that this was the only cause, because of the extent of the clots. They haven't been able to find any genetic conditions - but they have told me that they are not ruling anything out and they feel that as the medical world evolves, new genetic conditions may be discovered - and it may be that i have one of them! Who knows! i must admit, the thought of being on warfarin for life is rubbish - but as you say, there are new drugs coming out so hopefully we will benefit from them! hope you are feeling more positive! stay strong! x

Oh, my gosh, dough-heads - my doctor (who is not my doctor anymore, actually!) really pushed for me to go off of warfarin, despite two PEs and a superficial clot in my history. He said, I love this, "I mean, you live in a big city and now you know what a PE feels like, so if you got one you could get to the hospital pretty quickly and most likely you'd be alright." I'm not a gambler.

I, too, like the sound of what your doctor is telling you, Kate, even if it's hard to hear and accept these major life changes. If it's any consolation, a doctor friend of mine promises me that the pill form of lovenox (NO BLOOD MONITORING!!) has been approved and should be available this spring.

Hi all

Thought I would update. Had first injections yesterday after they took 3 goes at getting my bloods! Chickened out and got one of my nurses at work to give it. Think some of it was the little voice saying here we go again.

Got to start taking warfarin again saturday and good old cattle market anticoagulant clinic on wednesday. 'Sheep 22 to cattle pen No 3 please!!'. Always look after have been there to see if my number is branded on my bum!

As you can tell I feel a bit happier today mostly due to my friends here and also to the positive reaction I have had from family etc.

Thanks again all. Plucking up the courage to do todays jabs.... or maybe go into work and let one of them have a chance to pay the boss back!

Kate xx

Hi All

Having been advised to go back on the warfarin I decided to look at the recommended guidelines that the Consultant said the used at my hospital.

Think it might be use ful for those who have what is termed an first 'unprovoked' episode.
That is no contributing factors that can be removed- BC, long distance travel etc.

The guidelines are from ACCP (American College of Chest Physicians.
'For patients with unprovoked PE we recommend treatment with VKA (Vitamin K Antagonists) for at least 3 months. We recommend that after 3 months all patients with unprovoked PE should be evaluated for the risk -benefit ratio of long term therapy. In those whom risk factors for bleeding are absent and for whom good anticoagulant monitoring is achievable we recommend long term treatment.'

Of course these are only recommendations and needs to be a doctor that decides what the various risks are but having read this it is pushing me more towards the life-long option.

I found it interesting and maybe it will give those of us in this group some food for thought!

Kate