Sorry to hear that.

Similar situation with me, except my occurrence were limited to a DVT instead of another PE, but it was exactly six weeks after stopping warfarin as well. That was several years ago and I've been on warfarin since.

Welcome to the lifer club. Sorry you're a member but waddya gonna do.

Glad everything was caught early for you!

Sorry you had to go through it again. Any idea why it happened? The docs thought to take you off of warfarin, but didn't expect you to have another event. Do you think you have a clotting disorder? I read something about antiphospholipid antibody syndrome which causes people to form clots, and wonder if anyone on this site has it. I know there are many other disorders which cause it like factor V etc. I will ask my hemotologist about it in Oct. to see if I can test for it. Can any lifers out there use aspirin therapy instead of warfarin, or is that not strong enough? Sorry again you had to go through it again :-(

Thanks both. It really is a weird disease, had the worst night last night after the tinzaparin injection. You go to hospital feeling bad, get some medicine and come out feeling worse.

When I was in hospital in November, the consultant said I'd probably be a lifer then, due to the size of the PEs. However, each time you go to the NHS, you seem to get a different "expert" and at the appointment in June, he simply said you've been on warfarin for 6 months, it is time to stop. Doh! I'd like to think he'd thought about that decision, but I wasn't convinced at the time ... The original PEs were unexplained, but obviously there is something in me pinging out those clots

Must admit, I'm fairly philosophical about the whole process. Its just that I'm a bit of a wuss when it comes to needles. So I'm not looking forward to restarting the injections and blood tests :-(.

I've got the Anti-phospholipid Syndrome. I have elevated levels of Beta 2 Glycoprotein and Lupus Anticoagulant. I'm on blood thinners for life as well. The hematologist told me that even if they were unable to find any genetic clotting factors that I would be kept on blood thinners for life due to the massive size of my PE. I actually feel better knowing that I will be on blood thinners for the rest of my life. It gives me a sense of relief. I'm less anxious knowing that my blood it thinner than it was when I first clotted up. I'd rather be on blood thinners for the rest of my life than to wonder when and where the next clot will come from. But then again, I'm a bug wuss when it comes to this stuff.

I'm sorry to hear that you clotted again, but it's great you recognized the symptoms early this time.

My main hope is that if it happens to me again that I take appropriate action early.

Take care!

Rosiethecat,

The 6 month protocol is pretty standard for a first time idiopathic clot so I don't think that was out of line on the part of your provider. I too was on warfarin for 6 months originally and my PEs were massive, in both lungs.

I'm glad you have proper outlook on it all. I wish it made sense for me to not be on anticoagulants for the rest of my life, but two separate clotting events really puts it all in perspective. It's all good.

Please is it possible to share the details of symptoms and why you thought you were getting the PE's. I am at January 5th survivor of massive bi lateral PE's and am actually at 5 weeks off warfarin no sure original cause other than the usual suspect of BC

@dforthun

As you must know, different people have different symptoms, so it is important to recognize how you felt last time. As you asked :-), there was a bit of chest pain and shortness of breath/tiredness when running (chasing the children). Nothing too major and I'd probably have written them off as the usual aches and pains in getting over PEs. However, a couple of other things occurred within a couple of weeks:

* I had a load of ventricular heart beats (missed beats) at the same time as having the PEs last time. These had largely gone away, but it seemed like they were returning

* I unusually had bad upper back/shoulder blade cramp for a few days. Again, this happened last time.

It was these two things that sent me back to A&E, but I'd stress that these are highly personal and different people will have different symptoms. I was quite prepared for the nurse telling me to pack my bags because I had a chest infection, or something like that (she was probably thinking that as well), then the D-dimer test came back positive, and the usual stuff happens again ...

In short, PEs do reoccur and you should be aware of it, but don't be too anxious about it happening. If in doubt, go straight to A&E and get checked out, even if it turns out to be nothing.

It's so true. Once off warfarin, it's a balance of being aware of your body without making yourself completely nuts with fear and worry. I think some of that actually takes practice.

Most people who don't have some type of clotting disorder or on going risk factors don't get another clot. Some do, but most don't.

So, really what can you do but:

1) try to reduce risk factors, ie stay off hormonal birth control, stay mobile and active, lose weight if that may be a factor, etc;
2) know in general what are typical PE symptoms; and
3) since not everyone has the same, or typical symptoms of PEs, remember what it first felt like when we you had your PE symptoms.

It's scarey coming off warfarin, but it's ultimately a positive thing, in my opinion. I mean, it's a serious medication with it's own set of risks. Seriously, if it made sense for me not to take it, I wouldn't take it.

Sorry to hear you clotted again, im in uk and i had PE's in 2010, never found out why they happened. I was told to stay on warfarin for life as they could'nt find reason for having them. I wish you a speedy recovery and without a doubt better to be on blood thinners than not.