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 all
Went for my final thrombophilia results today and the good news is that they are all negative.
BUT during the 4 weeks I was off the warfarin for the testing my blood showed signs of starting to clot again so I have got a clotting disorder of some kind but they just dont know what it is (YET)!
So it means I am on warfarin for life. Kind of what I was expecting and at least I didnt have to actually make the decision which is kind of what I was hoping for as it wasnt really one I wanted to make.
Think a few months ago this would have freaked me out but I count it as progress that I am kind of feeling ok about it. As the haematologist put it- any bleeding problem has a chance of being treated where as I might not have a chance if I have another PE.
So I guess I am part of a new club -The lifers!
Take care all
Kate x
Went for my final thrombophilia results today and the good news is that they are all negative.
BUT during the 4 weeks I was off the warfarin for the testing my blood showed signs of starting to clot again so I have got a clotting disorder of some kind but they just dont know what it is (YET)!
So it means I am on warfarin for life. Kind of what I was expecting and at least I didnt have to actually make the decision which is kind of what I was hoping for as it wasnt really one I wanted to make.
Think a few months ago this would have freaked me out but I count it as progress that I am kind of feeling ok about it. As the haematologist put it- any bleeding problem has a chance of being treated where as I might not have a chance if I have another PE.
So I guess I am part of a new club -The lifers!
Take care all
Kate x
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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.
I'm still waiting too even though I am a lifer (3 episodes now) fro Coumadin therapy.
Here is some excellent information regarding thrombophilia testing (what they should test for) and also, touches alittle bit on how patient who suffer a spontaneous clot should be managed:
http://www.fvleiden.org/ask/49.html
Regards,
Tom in Connecticut
I am soooo sorry to hear that you are a lifer. It is not a club that I wish any new members to join. I am in the same boat as you with having a clotting factor that can't really be determined,....i know the FVL but there is another factor for me that they can't identify. My hemo said the same as yours, a bleeding issue can be dealt with, but, another PE could not. Good luck.
I have to stay on warfarin too as I now have pulmonary hypertension. Luckily I only need 4mg per day to get my INR therapeutic so I don't seem to have suffered many of the side effects that others on here mention.
When I first got the news I cheered myself up by deciding to have a lovely med-alert bracelet as I love all jewellery! I still haven't found one that i really like enough to wear all the time but must sort something out soon. Sandi x
Glad you have a good attitude about it, because worrying about it or obsessing about it doesn't help, not at all. Trust me, I've done it.
same sentiments as the others - sorry you're here but there but equally the alternative would have been a concern. The best thing we can do for ourselves is to be informed and supportive and who knows what's round the corner treatment wise. the main thing now is to keep well x
Thanks so much to you all for your support and encouragement. I know that the people on this site are responsible for the positive attitude I hope I am developing.
Feel that without the uncertainty hanging over me I can move on and hopefully begin to support for others in return.
Great idea Sandi re the jewellery. What a great excuse to buy some. And it is essential to have more than one to match all outfits!!!
Love to all
Kate x