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.
I have got a huge dilemma. I was diagnosed with my first PE in December. In October I had what they thought was a torn calf muscle which became a DVT. My PE in December was massive and broke into multiple clots.
My father had PE and DVT several times, I had a borderline result for sticky blood and have had numerous miscarriages. The original consultant said I would therefore be on the meds for life. However, the test for thrombofelia came back negative so now a different consultant is saying I should come off the medication in June. He agrees I probably have some kind of problem with clotting but as he cannot see what he thinks I should come off it.
He says ultimately it will be my decision. I just think it's an impossible decision! I have had several pains in my calfs and thighs lately (I am not therapeutic as they took me off oral meds for a while as I was being sick) and am very worried. What should I do?
My father had PE and DVT several times, I had a borderline result for sticky blood and have had numerous miscarriages. The original consultant said I would therefore be on the meds for life. However, the test for thrombofelia came back negative so now a different consultant is saying I should come off the medication in June. He agrees I probably have some kind of problem with clotting but as he cannot see what he thinks I should come off it.
He says ultimately it will be my decision. I just think it's an impossible decision! I have had several pains in my calfs and thighs lately (I am not therapeutic as they took me off oral meds for a while as I was being sick) and am very worried. What should I do?
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Have they tested you for MTHFR(MethylTetraHydraFolateReductase)? This is a genetic mutation which predisposes you to cardiovascular disease, strokes and clotting. My bloods all came back normal until this mutation was discovered. It has been linked to miscarriages, but this alone will not cause clotting. My PE occurred because I was on birth control and that was the trigger.
It does seem like a difficult descision, perhaps you should seek another medical opinion?
Goodluck with it all I'm sure the right decision will be made, take care.
Me personally, I've had a complete run-through on my blood tests twice and have come up negative on every thing. Still, I've clotted three times and everyone is in agreement that I should stay on the meds at this point. For me, I am much more comfortable on them than off. This way, I can live my life without feeling like every ache and pain is another clot. It is actually kind of freeing.
Hang in there and ask questions until you feel like you have enough info to make a decision.
It is your decision but it's not a decision you need to make today. So, I agree that maybe you can do some more research, perhaps get another opinion etc and then decide. Perhaps it won't feel so agonizing then.
No one has a gun to our heads to stay on warfarin. Even my hematologist said that due to having a second clotting event, it is recommended to stay on warfarin long term, but that it was really up to me. Of course, he did say that if he were me, he'd stay on it, which I thought very honest, caring advice, which I took to heart. I think the size of my PEs and the fact that there was no known reason for my clotting spooked him a bit.
On the other hand, I have a coworker who literally sits in a work station right across from me; she had a PE about 6 months before I did. She tested positive for one of the genetic tests (can't remember which) but then did the tests again later with a new hematologist and he felt that her results were so borderline that he said that if she wanted to come off warfarin, he'd be fine with that. So she did and she was very happy about that decision.
No need to worry yourself right now. You have time to sort this out, think it all through and come to a conclusion you can live with.
Thomas Cowen, M.D., in California, can do phone consultations. He is who I would consult. He does not specialize in this, he's just a brilliant doctor who sees human beings as whole beings. You can google him if you like.
I know there are natural blood thinners. Certainly if you go off warfarin, you should explore/use another approach.
All the best to you.