Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi everyone,
Hope you're all well. Hoping some of you can share your thoughts on this. I'll try to keep it short :)
I had a large bilateral PE with right heart strain in May 2015. I am heterozygous for Prothrombin Gene Mutation, I knew this when I was pregnant and was on a low dose heparin injections for 6 weeks after giving birth. I had thrombophlebitis when I was 38 weeks pregnant as well. I had a CT scan done then which was clear and ultrasound on my leg detected no dvt. I was diagnosed with my PE 9 weeks after giving birth (normal delivery but I did have a few internal stitches). I developed a cough about six - seven weeks post partum but put it down to being run down after giving birth but went to my GP 8 weeks post partum and told him I was worried I had a PE but he laughed it off said I was just tired. By the time I was diagnosed I was barely able to catch my breath.
I was put on warfarin and advised that I would be on it for life. I had a follow up echo in July 2015 which confirmed that my heart had remodelled itself and pressures were normal. I had my first haematology appointment in Sept 2015. At this meeting I questioned why I had to be on warfarin for life when it was my first event and likely provoked by pregnancy. She said that it was too risky to take me off warfarin because of the gene mutation, the extent of clotting and the right heart strain. She said if I was to have another PE I would likely die. As you can imagine hearing this was pretty hard to take in but ten months on I've overcome my anxiety and feel a lot more like the old me.
I moved country last September. I was admitted to hospital with pains in my chest which turned out to be anxiety I think as I passed my stress test and echo was normal. I received an appointment with a new haematologist on March 6th. His advice contradicts the advice I was previously given which now has me in a muddle. He doesn't understand why I've been put on it for life and wants me to come off it now. He said he doesn't treat people with Prothrombin any different to people without and said I'm at a higher risk of a serious bleed than I am of another PE.
I don't know what to do now. It's so confusing to have two very different professional opinions. I would love to come off warfarin but I'm only 37 and have a young family and am scared if I clot again I'll die. I have a follow up meeting with the haematologist in May.
Any advice would be very much appreciated.
Thanks :)
Hope you're all well. Hoping some of you can share your thoughts on this. I'll try to keep it short :)
I had a large bilateral PE with right heart strain in May 2015. I am heterozygous for Prothrombin Gene Mutation, I knew this when I was pregnant and was on a low dose heparin injections for 6 weeks after giving birth. I had thrombophlebitis when I was 38 weeks pregnant as well. I had a CT scan done then which was clear and ultrasound on my leg detected no dvt. I was diagnosed with my PE 9 weeks after giving birth (normal delivery but I did have a few internal stitches). I developed a cough about six - seven weeks post partum but put it down to being run down after giving birth but went to my GP 8 weeks post partum and told him I was worried I had a PE but he laughed it off said I was just tired. By the time I was diagnosed I was barely able to catch my breath.
I was put on warfarin and advised that I would be on it for life. I had a follow up echo in July 2015 which confirmed that my heart had remodelled itself and pressures were normal. I had my first haematology appointment in Sept 2015. At this meeting I questioned why I had to be on warfarin for life when it was my first event and likely provoked by pregnancy. She said that it was too risky to take me off warfarin because of the gene mutation, the extent of clotting and the right heart strain. She said if I was to have another PE I would likely die. As you can imagine hearing this was pretty hard to take in but ten months on I've overcome my anxiety and feel a lot more like the old me.
I moved country last September. I was admitted to hospital with pains in my chest which turned out to be anxiety I think as I passed my stress test and echo was normal. I received an appointment with a new haematologist on March 6th. His advice contradicts the advice I was previously given which now has me in a muddle. He doesn't understand why I've been put on it for life and wants me to come off it now. He said he doesn't treat people with Prothrombin any different to people without and said I'm at a higher risk of a serious bleed than I am of another PE.
I don't know what to do now. It's so confusing to have two very different professional opinions. I would love to come off warfarin but I'm only 37 and have a young family and am scared if I clot again I'll die. I have a follow up meeting with the haematologist in May.
Any advice would be very much appreciated.
Thanks :)
I think I'd do a couple of things on this. First, do some of your own research. You might check Clot Connect (where I found a link to the following article: http://vmj.sagepub.com/content/20/2/193.full.pdf+html). Also, www.stoptheclot.org is another good resource. Both sites might be able to give you some research and statistics related to prothrombin.
Also, you need to ask yourself what you personally would feel comfortable with. It can be hard to know in the heat of the moment, but give yourself some time to really think through what you *feel* about the options. It's really up to you to decide what is best for you and your family and your future.
From my (admittedly brief) review of your situation, it does seem like you might be OK to come off. Even with the gene mutation, you had a clear cause for the clotting, since you were post-partum and that is an extremely high-risk time for clotting. You might particularly look into whether prothrombin is a bigger problem in relation to pregnancy and birth (some clotting disorders are more affected by this than others) or whether there are situations where prothrombin can be more of an issue.
Definitely go to your next appointment armed with questions. Take another person with you if possible (I tend to take my husband when I've got a doctor's appointment of real importance, like discussing surgery) because he/she might be able to think of questions that you haven't thought of.
Ultimately it is up to you. Doctors can give different advice, but you have to be comfortable with what you do or don't do down the road.
I've been reading some research articles online and discovered a few that say that people with Prothrombin Gene Mutation are no more likely to have an increased risk of having another DVT or PE than someone without so that is positive. I didn't realise that some clotting disorders are more of a problem in pregnancy so I must look into that. I had no complications with my first baby but I was on heparin for most of that pregnancy unlike my 2nd pregnancy. The haematologist sent off my blood to be checked for antiphospholipid antibodies. He was pretty shocked I hadn't already been checked for this, it was the first time I'd ever heard of it myself.
Thanks again :)