Prothrombin Gene Mutation?

[MusicLover83]

Hi guys.

In November I was diagnosed with multiple PEs (Pulmonary Emboli - clots on the lungs). This was quite a shock for my family and I and the doctors, too as I had no risk factors (apart from being on OCP) or family history.

I have since found out that I have a Prothrombin Gene Mutation which means I am 2-5 times more likely to develop clots than the general population. I am currently on warfarin and have been told not to take any hormonal contraceptives.

I have an appt with a haematologist in a few weeks and have a lot of questions. I am not sure how long I will need to be on warfarin. From the Respiratory Consultant's POV I should only need to be on it for about four months, but that is not taking the Prothrombin Gene in to account.

Has anyone here had this disorder? What treatment are you on, long term? What do you use for birth control? And my biggest question (which I why I posted in this section) - How did it affect your pregnancy and births? I'd really like to have home births but I'm not sure if this will be possible now - if I will be considered high risk?

I am not currently TTC. Though before I got sick I was thinking of starting soon. I've been advised not to fall pregnant at the moment as pregnancy also increases the risk of further PEs.

Thank you for reading this very long post! x

[Manda..]

Hi there

I was diagnosed with Lupus anticoagulant, aniphosphilipid syndrome and a Prothrombin Gene Mutation after suffering from a DVT when I was 18 - 9 years go. Since then I have been on Warfarin and will be for life. I would assume that you may not have to be on warfarin for life but perhaps take aspirn daily after you come off the Warfarin to thin your blood. I was taking the pill to manage pain for endometriosis when I was diagnosed with a DVT - then when I starting taking the Warfarin my periods were extremeley heavey and I could no longer take the pill. I opted for an IUD (Mirena) it has been great as I haven't had a period since. It is really effective and only needs to be changed every 5 years. I haven't started trying for a family yet but I know that when I do i'll need to come off the warfarin and start heaprin injections. I also know that it will be a high risk pregnancy due to my clotting disorders. I am interested to know though if there is anyone in Melbourne that can recommend an obstetrician who deals with blood clotting disorders?

I hope I have answered some of your questions. I'd be interested to know what your haematologist recommends