I know how you feel, I had be PE's in August also and I'm to go off Coumadin next week and then be tested for genetic factors. I, like you am scared. I hate the stuff and the way it makes me feel. But, its also calming to the brain. If you know what I mean.

There are natural blood thinners and aspirin you can take afterwards. I had my multible PE's in August to from a wheelchair in which I didn't get up periodically to loosen(revascularize) my blood. It came from my hip surgery and sitting instead of using crutches.

SO move about and try to find some natural herbs to help your blood from clotting.

Same here... I had a PE in August and am scheduled to go off Warfarin in 8 days. I tested negative to the genetic testing and my docs are not sure what caused the PE. They have an idea but deffintaley are not sure. My Hemo says that he does not recomend staying on coumadin unless it is absolutley necesarry. I am all for trying to go off it as I am a very active person and love sports. I personally cant wait to stop taking it.

I just had genetic testing...will find out my results on Feb. 20 when I see my hematologist. I didn't have to come off of warfarin for my testing as the tests that warfarin interferes with (Protein C, Protein S, and some antithrombin), I've already tested negative for. I am a bit nervous about it all. I've been on warfarin for 9 months (PE discovered on May 1, 2008)...but have devised a plan with my Hematologist (if I test negative for everything & don't need to be on warfarin). She will give me a D-dimer test at the end of my first month off...apparently if it is positive one has a much higher risk of a recurrent clot, if it is negative, that is a good sign (doesn't mean I'll never clot again, but chances are lower). I want to get regular d-dimer tests throughout the first and second year (there is always a chance of false positives, but at least I will be checked out thoroughly following that). She will also give me Lovenox shots when I do any long-distance travel or if I ever need surgery. I plan to take fish oil, eat some dark chocolate and drink wine regularly. It is scary, I know, but there is a much higher chance statistically that you won't clot again than that you will. The good news is that we know what to look for now; when we go to the doctor's office or the ER, the docs will know immediately what to look for...and we will always be treated immediately.

I'm a little scared, but at the same time so ready to get off of this drug. Even if I have to come back to it...1 yr. down the road or 10 yrs. down the road, I like the idea of being able to take a break from it for a while.

Drink lots of water, move around a lot...just stay on top of your health.

Take care,

nancy

Hi

This was sooo me a few months ago. My main worry was that I still had chest pain so how would I know if I would have another PE

The advice I would give is to note how and where your pain is now and then hopefully you can tell if it any different. Also if you are at all worried get it checked and dont worry if that is once or ten times as long as it reassures you. I lasted 2 weeks before I went to A/E the first time!

By the way I too had no cause for my PE (unprovoked) and have now been told that in
such cases some guidelines recommend warfarin for life.

The American College of Chest Physician guidelines say that as long as there is no extra risk of bleeding and there is good monitoring then they recommend cosidering life long treatment.

I was off warfarin for 4 weeks for my genetic testing and at the end of it my clotting showed it was already becoming abnormai.

Have just been told this so am looking at life long and that is nearly as bad to come to terms with as stopping it! We cant win can we.

Of course these are just guidelines every case is different. Some doctors use other guidelines too. But it may be worth asking.

Hope this helps and good luck

Kate x

I'm due to come off warfarin the end of Feb. Like you no known cause and I cannot afford the tests to see if I'm at risk for another one. So, ya I'm scared but I'm not going to dwell on it, I have a life to live!
My plans are to keep my blood moving and be active. Also going to swallow some Apple Cider Vinegar everyday.
I haven't had any chest pains or breathlessness for a month now, but I think if I was still having them this close to going off the thinners that I would be seeing a different doc to find out why...or maybe it's anxiety???

Thanks everyone, I am already feeling better seeing your replies and suggestions.
I saw my doctor today and no longer taking the thinners but will just keep up with the exercise and try not to worry. I am seeing the blood guy at the hospital in April so will hopefully know more but as you say at least I will know if it happens again!!

I think maybe I worry too much but thats normal I suppose, thanks again xx

hey there! good luck and please update us with how your doing off coumadin.

Wishing you a happy healthy new year!

Today is my last day of coumadin after 6 months. More blood tests in 2 weeks. I'm excited and like Cathy33 a bit nervous.

Let you know how it goes.

shawn

I still get chest pains too. I got it all checked out and they don't know why I still have chest pains either. I have been off the thinners for almost a year now!! Wow can't believe it has been that long!

I had a PE in Dec 2008, trans sacral fushion on my L6 disc in May before that.Only thing my Dr can relate this to. I had this PE for 3 to 4 weeks before it was discovered.One Dr missed it and prescribed me an antibiotic. I did find out I do have a genetic makeup that can cause clotting. I am due to go off warfarin in July. My Dr is seeking the advice of a blood specialist about me staying on blood thinner. My orthopedic Dr thinks this is the best choice too. Once having one increases the chances of having another. I don't want to take that risk. For chest pain, I do have a little , not very noticeable but there. The PE did do some damage to my left lung. I just had a ct scan to see how that is healing up. I hate taking coumadin but Id rather take it than have another PE. I would have your blood checked for genetic propeties and see if its positive. If so I think staying on it might be the best option.I think you have to do what in your mind eases your anxiety and lessens your worrying about this. I don' t in anyway like taking this med, but I am seriously thinking of asking my Dr to keep me on it for life. In the back of your mind you will always wonder when or will this happen again.I was given klonopin to ease my anxiety, I take a .5mg at night at bedtime. I know exactly what you feel. Good luck to you and ask your Dr more guestions and if need be get him to give you something for anxiety if you don' thave anything for it.

Hi Guys, sorry its been a while before updating you! I am so thankful for all the advice and to see other peoples stories.
I have had a test to make sure the clots have cleared which they have. I also have an appointment in 2 weeks to have genetic blood clotting problems. I have recently discovered that my grandad had suffered 2 PE's in his lifetime.
My pains have now subsided so much, I only get them occasional mornings.
Thanks again everone and I will let you know how it goes.
I hope you are all doing well.
Cathy

But Cathy, how are YOU?
Emotionally and physically? How is life w/o anticoagulants?
You have NOT said how you were... People may learn from your experience, I'm sure that many are about to take that same leap of faith.
Kicking Auntie Coag (we won't say where...)
Hope you come back and explain what you went through, withdrawal, anxiety...?
Every person is different, I had none of these and tomorrow will be week three w/o anticoags.