Deep Vein Thrombosis (DVT) Support Group

I know you feel like a walking time-bomb when you're first dx'd with DVT, but lovenox is therapeutic right away, plus your INR is slightly higher than desired range but not dangerously so (the danger in high INR's is in bleeding events, not clotting/pe events). While I don't have exact numbers for you, and can only go by what I was told in the first week of my DVT dx, I'd say you are at a substantially reduced risk of PE right now. Risk of PE, or any malady for that matter, is never completely gone unless you're no longer among the living.
Clots adhere to the vein, and having a proper INR keeps new clots from forming while your body "dissolves" the clot you have. I was told it was ok to travel right away, as long as I took breaks and walked every hour, and stayed well hydrated. And you don't need to limit exercise if your leg feels good enough - walking is GREAT for your circulation. If you do have swelling afterward, elevate your leg.
Most of all, try not to worry. True, it's not impossible, but it's pretty rare to have a PE or another DVT while on anticoagulants.

Karen,

I agree with LauraLu's comment. While on anticoagulants your risks are relatively low.

For general information, on the 26th of September up in Boston is an event known as the Thrombosis Summit. This event is held by the North American Thrombosis Forum (NATF) and though geared towards healthcare professionals, patients are often welcome.

Some of the top blood clot doctors in the U.S. will be there and some great information is passed out. Dr. Sam Goldhaber of Brigham and Women's Hospital in Boston is the head of NATF. Anyways, just thought I'd pass that info along, not sure if it's too late to register to attend as a patient or not but none-the-less, the organization offers patient support for those up in MA. I will be up there for the faculty working group on Friday but will not be able to attend the symposium part of the Summit on Saturday.

Regards,
Tom in Connecticut

I would have to say that i was scared and still am at times. The emotional ride as i call it goes up and down and if your like me so will your INR. I dont feel I can share what my doctors said or did but from my experance if you have a good doctor you trust the ups and downs wont be so bad. I wish you the best of luck.

Thank you all for your input. Feeling like a walking time-bomb is exactly right, although when I think about it, I was more of a time-bomb when I was undiagnosed. I appreciate all your help. I'm so pleased to have found this site!

Hi Karen,

From what I understand, once anticoagulated for a few days to a week and then staying within a safe INR range (not too low, as LauraLu explained) means you are pretty safe from new clots forming, or breaking off and travelling to the lungs to form PEs.

So, now that you are on coumadin and monitoring your INR you should not have to worry about the risk of travelling. It's only when you stop taking the coumadin that you will need to take more precautions since you now have a tendancy for clots.

As for the exercise, just see what you can do. If it hurts, stop and take a rest. Try again the next day and see how you go.

Wishing you all the best for your recovery!
Pip

Hi Karen,

I can relate to the walking time bomb sensation.

For the past year (which has been very stressful period for me) I have been experiencing chest and abdominal pains related to stress. I was pretty thoroughly checked out on the physical side and when nothing was found, I finally swallowed my pride and went to see a terrific psychiatrist. I was just getting past all that pain when my DVT problems came to light. Now it's all back and I wonder every night, am I dying or just a little nutty? I just hope if I get a a real PE it's something easy to recognize like coughing up blood!