hugs babe I have just read your story I am very sorry. That is my worst fear for my daughter she is only 3 and suffers from factor V leiden syndrome as well as she has an arteriovenous malformation on her leg. I am not one for doing adventerous things so I cant really be of much help. I am sure that you can find some other things to keep you going. I have found my strength in photography and documenting everything that happens to her so that one day she might look back on it and see how she fought and then that way if something should happen to her i have her memory with me :) chin up sweetheart

I would think that you have to listen to your body but also remember that being "typical" is healthy. Going to a water park will give you exercise you just need to know your limits. Right now there is no way I could do a water park as I need a nap after going to the doctor. But I do know I can do short trips to malls if I don't sit down to realize how tired I am. Activity keeps blood flowing and that helps us all. it also helps out our mental health which is also important.

Not sure if anyone is still reviewing this thread but wanted to add my 2 1/2 cents. I suffered my first DVT back in 1992 which was also accompanied with a PE. The doctor told me I wouldn't regain full use of my left leg. I proved him wrong in 1993 by having my best cycling season ever. In 1995 I had my 2nd DVT, this time I was told I would be on Coumadin for Life. In 1996, while on Coumadin, I competed in mountain bike races once again.

For those on high target INR coumadin (2.0-3.0) you definitely need to exercise caution in what activites you do. But, coumadin doesn't have to be a crutch. Live life to it's fullest, listen to your body, and be conservative in your physical activities. I still mountain biked but I also quit racing in 1997. After the clot in 1995 I found I just couldn't compete at the same level as I did before.

I am now on low target INR coumadin (1.5-2.0) and at this level I don't have the side affects which most people complain about and also don't have the bleeding issues. This low target INR was documented in the PREVENT Trial and is shown to be very effective for us Coumadin "Lifer's" while reducing the associated risks (bleeding, etc.).

Despite what many physicians say, Coumadin does cause fatigue, especially in the evening hours. Vitamins B6 and B12 "may" help. For me it did. My physician recommended me to take this vitamins after complaining about being tired. Staying active also helps.

Regards,
Tom

i know what you mean i got my last dvt just from going to the show doing what every one else was doing and now on warfarin for life.
i wanted to go sky diving, bungy jumping and anything that gives you a rush.
i also wanted to be an air hostest so i could travel and see the world but that is also out of the picture for me =(

There is nothing you cant do in moderation. I did the water parks and roller coasters, I am still here and fine . I decided I was going to live my life to its fullest and enjoy as much activities as I can. I will not miss anything, life is short any way you look at it.