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.

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Done with Warfarin

philid1973
philid1973
I suffered a bilateral PE in June with permanent lung damage. I have been on Warfarin since then. I took my very last dose today. I had a long car ride today as well. Im nervous. Im having leg cramps, and that makes me nervous. I have leg cramps frequently for whatever reason, and so Im worried that my anxiety will get the better of me.

How had everybody else handled going off blood thinners?

I have another Doppler in a week and I follow-up with my doc after that. Ill redo the genetic tests and if all negative, I will stay off blood thinners for good.

Somebody posted that 50 percent of people with a clot witll get another one, and of that 50 percent, 30 percent will not survive. Those statistics scare me. Is that really true?
TossNTurn
TossNTurn
No, those statistics are wrong. The numbers are no where near that high and really it depends more on what caused the clots, whether you have genetic factors, etc. and etc. as to what the odds really are for you personally. I wouldn't spend time obsessing over the stats (wrong or not). Spend time thinking about getting back to life and moving past this.

It can be stressful to lose your "safety net" of warfarin, but it really is a good thing. Might take you a little while to adjust and you might be hyper-alert to every twinge in your body for a while, but you'll start to adjust after a while. You know what the symptoms of clots are and you know when to head to the hospital so trust yourself on this.

Hang in there!
Lynnedz56
Lynnedz56
I agree with Toss. You read statistics all day long and not live your life. Being informed is good. I've read everything I can on blood clots since this happened to me a third time. But those statistics aside, I have also read many references that warfarin is a BAD thing long term if you can avoid it. It is a very dangerous drug and not to be used lightly or long term if at all possible. If we sit around and worry about everything that might kill us...how do we live life. I had one PE and was glad to get off warfarin. And I went on with life. Sadly, I had a second one. Yes, it might have killed me. And I will take the warfarin the rest of my life. Again, listen to your body and be watchful, but if you get the go ahead, don't worry.
rmb
rmb
It's good to come off of warfarin, if you can.

As you become more confident and trust yourself, you will move past the fear. I've been a member of this community for 4 years and can tell most of the people on this site who went off of warfarin, went off of it without a hitch.
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