Hello, I am new to this site I unfortunately had a PE in feb 2013 it was a very scary time as I'm sure you are all aware.

[Jovigirl]

I have just turned 40 and consider myself to be quite fit, with no family history to my knowledge, no medication, operations non smoker etc.. I have been put on the anticoagulant programme (warfarin) the next 6 months and told at the time i would have another ct scan and further tests and probably be on medication for life as i would be classed as high risk. However at my review appt yesterday with a registrar told me that I will complete the course then just stop and didn't see the need for further tests. I explained that when I had my PE I had no warning just woke up in agony then took straight into emergency I was very lucky and want tests and want some reassurance registrar told me still didn't think I need more tests. I am very nervous about my future I still have quite a lot of pain in my chest, i know how dangerous a blood clot can be and feel as safe as I could been on the warfarin I haven't had any side effects on this medication and am very worried about coming of this as I am frightened this could happen again without any warning and next time not be so lucky.. Any advice ??

[Vittalanand]

You better expand PE to make us understand what you mean. There are lot of anticoagulants and blood thinners. The suitable medicine has to be decided by your doctor only. I had attack of Myocardial infraction due to thickening of blood and was cured by emergency administration of strepto kinase. After that I am being prescribed blood thinners, vasodilators,and anti clotting agents and I am living happily. Death is imminent for all but it should be honourable and painless.

[Jovigirl]

Hi there, pulmonary embolism in my right lung in fact there was two clots, I wasn't I'll beforehand and I experienced no signs that there was anything wrong, just woke up and couldn't move because of the pain to my chest..

[Lynneiow]

I had an unexplained DVT, took Warfarin for 6 months, my doctor said that l should stop taking it but l had another blood clot. Further tests revealed that l have a genetic blood disorder that causes abnormal clotting, so now l am on Warfarin for life.

You must insist on further tests to find out why this happened in the first place. Don't be fobbed off!

[sarah0403]

Hi,

I've experienced a similar situation. I had a massive p.e last may & it was very sudden, unexpected & the reason for it is unknown. I am 27 yrs old & do not fit into any of the high risk categories- i'm fit & healthy & never had any problems before. I have been on warfarin ever since & will be for life. I was told they woul try to find out what caused it but when i saw a number a consultants & specialists after they told me that they couldn't do any tests & that since the clotting process is so complicated sometimes they just don't know why some people get clots & others don't. I completely understand how frustrated you are. The common course of treatment after a clot is warfarin for either 3 months or 6 months & your registrar obviously feels like you are safe to come off the warfarin. Did he/she explain why you didnt need to be on it for life? I think it is common for them to prescribe it only for 6 months for people under 70. It is a worrying time but if this experience has taught me anything it's to live life to the full as you dont know whats round the corner.

[gel1]

Hi jovigirl, I am 6 months down the line from a bilateral PE, like you very fit never smoked then suddenly ended up in hospital. I am being tested for genetic links to clotting (factor V leiden and prothrombin gene variant) as my brother had a PE at my age. If they are negative I will just come off Warfarin, the prospect of no anticoagulation being quite daunting once I had become quite used to it. I spent the first few months worried to death about my PE, what had caused it, would it reoccur so all your concerns are quite natural for someone who has been seriously ill. I still get stabbing twinges in my ribs (although no one seems to be able to tell me what they are). Did you have a DVT ( I didn't). Like you I had conflicting timescales for anticoagulation therapy, one letter says I am it for life another letter 6 months. Has anyone on this community come off Warfarin at 6 months post PE and did they get any support or a consultation appointment to advise on reducing any risk of reoccurence.

[daisyd]

Morning, I would have a chat with your Gp their is a condition call Hughes syndrome also called sticky blood and Antiphospholipid syndrome. It is on the health unlocked site take a look and a copy from the Hughes foundation web site to your Gp and ask if you can be tested for it

I had a DVT first luckily it was before I got a PE and also premature babies cause also by sticky blood and a Heart attack, I was put on Warfarin for life. It has also lifted my brain fog.

Please read the information on this site it explains it better than I can.

When you see your Dr/ clinic explain how worried you are.

Hope you can get the Doctors to understand what it must be like,

You are only 40 so sit there till they listen to you

Take care, good luck

[Jovigirl]

Thanks everyone, for giving my some answers I will fight my corner to further testing as I want to reduce my risk in the future and hopefully I may find answers to why this has happened. Gel1 it was a PE not DVT like yourself and I too get a lot of discomfort almost like cramps in my chest mainly on the opposite side to lung with the PE. I have mentioned this to my own GP and they say take pain relief ! Daisyd thanks I will read the link. Lynneiow and Sarah0403 thank you !

[callum19 in reply to Jovigirl]

I have pe and dvt I'm in it for life mainly family history of heart attacks and my mums blood clotted in transfusion and died you need a referral to a vascular consultant more than a haematologist If your not happy with the hospital all hospitals have women and family directorates hope it helps feel free to contact me anytime if I can be of help

[jackdaw50]

Hi, I am in much the same position as you having had a dvt and pe in Jan/Feb of 2013. I was admitted to hospital for 6 weeks with scans and specialist treatment as the dvt was so large and I wasn't responding to the usual. Since discharge I became stable and on seeing my consultant after 6 months he said I was 'cured' and could come off all mediacation (Warfarin). I expressed suprise as the clot was big but he said that after 6 months it would have gone. We asked for a CT to confirm but he said it was not needed. 2 weeks after coming off Warfarin my right leg swelled and we went back to A&E. After 6 hours including a Dopler and CT I was diagnosed with a residual clot. Now back on medication for life. Feel angry that a CT was not done before I came off the Warfarin considering my unusual case. It might have meant a longer period on the drug rather than 'for life'. Lesson: we should insist on a CT before coming off medication in unusual cases! I think it should be the norm but there is no money.

[nossib]

Hi Jovigirl, I also suffered a PE late 2013 and have been put on 'lifetime' warfarin.  I 've been told if I ever wanted to trial coming off it, would have to have a CT Scan, further tests. 

Like you, I still experience intermittent pain under my breasts, in ribs and it's scary!

Good luck, do keep us posted of your health. Susan