Ultimately, it is always going to be your choice whether you take Coumadin or not. I mean, no one is going to drive to your house and force it down your throat every day. If you don't take it, well, you'll fall into that category of patients who is considered "noncompliant." You can have every doc on the planet tell you to take Coumadin, but it won't matter unless you're on board with it.

I don't know what the odds are that he'll say you should stay on Coumadin, but I'd bet that they are pretty high.

In my personal story, I had two DVTs. Both of them were blamed on birth control. I was on regular BC and got a good-sized clot in my right leg. Did my six months on warfarin and came off. Four years later, I had two different OB/GYNs tell me I'd be OK to take progesterone-only birth control (since Estrogen is usually the culprit with clots). Five weeks later, I got my second DVT. I was tested twice for genetic clotting disorders (negative on everything) and checked in with a very reputable hematologist around town. We all agreed it was probably the progesterone-only BC. I went off warfarin after six months and was de-lighted about it.

Four months later, I wound up in the ER with multiple clots in both lungs. I had no precipitating factors, no risk factors, and was tested again for everything genetic (and again came up negative). At that point, I was de-lighted to stay ON warfarin. I wouldn't re-live that clot experience for anything.

I guess what I'm saying is that everyone has a different comfort level with the warfarin and that it might change over time. I was thrilled to come off two times after my two DVTs four years apart, but now you couldn't pay me enough to stop taking it. I really hope that isn't the case with you, but...

My case is similar to yours. Negative for everything. Much more minor second clot after three and a half years off warfarin with no issues. But I still clotted a third time and it was much, much worse than the previous two times. I'm not saying all this to scare you, but just to remind you that nothing you seem to be hinging your decision on is an absolute yes or no about whether you'll clot again. Ultimately, it has to be up to you to do what you're comfortable with. If you don't want to take it, then they can't make you do so, but you HAVE to be comfortable with that decision. I can totally understand why you would be ... as I was, too.

Ask a lot of questions, and listen closely to the recommendations from your docs. But remember, they are just recommendations ... you get to be the one making the final call.

Usually, after a second episode of clotting, yes anticoagulants for life is the norm, specially if you are idiopathic.
Sorry, but welcome to the club.

What Toss said...

Thanks! It took 9 weeks to get my INR in the proper range. I expect that I would not be happy to be on Coumadin for life but if that's what is required then that is what I must do.
We will be traveling back and forth from NY to MA as we are retiring, selling our apartment and looking for a house about 250 miles away.
I think the second clot came as a result of that very same trip in September (car ride, 5 hours there, one day in between, 5 hours back)
I never realized that a 5 hour car ride would result in another clot!!

But you can do it, if you stay well hydrated (meaning also that you'll have to stop for washroom breaks more often) and do your feet exercises.
I remember doing a drive from Ontario to Maine after my first clot and somebody asked me if I was ok, moving like I was moving?
Blah,blah, I have to,blah, blah, it's when I'm not moving that you should worry.

Most people can travel long distances and what not and not clot. Thousands of people do it everyday and don't get a clot. But there's obviously something in your body, for whatever reason, that likes to clot. And you may never get another clot again, but because you appear to be prone to clots, your doc is weighing that risk and making the recommendation upon the facts of your history.

Like Toss said, the choice is ultimately yours. No one wants to take warfarin for the rest of their lives. I get that. I don't want to either but I do because clearly, my body likes to clot, and my PEs were so substantial that I'm scared not to be on it. My brother is in his early 30s and is on warfarin for life for one DVT event. Due to my multiple clotting history, his doc recommended long term warfarin for him (we have no known clotting disorders).

I know it's hard to imagine being on warfarin long term if historically it was hard to get in range. When I was on warfarin initially for 6 months, it took 5 months of that time to ever even get to an INR of 2 or above. When I went back on it for my second clot, it was easier to get in range. Still took a while, but it happened and I've been generally stable for over three years now, with the exceptions of a few blips here and there, one of which I'm experiencing now. But it's just a matter of tweaking the dosage.

Only you can say what's best for you. But it's something you don't have to decide immediately. If your doc recommends prolonged warfarin, what you could do is just stay on it for a while and see how it goes, and if you decide you don't want to do it, then stop taking it. I would try not to agonize over the possibility of staying on it long term. Get as much information as you can so you are informed and really ask a lot of questions of your doc. You may also want to get a second opinion from a hematologist.

You really are the ultimate decision maker on the matter and it's not something you need to decide this second.

I will adds something short regarding travel as most of everything has been covered much better than I could have said it.

Ten months before my first DVT my wife and I flew to Italy for vacation. We flew coach and I knew nothing of staying hydrated or getting up and walking around. I didn't even know what a DVT was. When I did get the DVT I was diagnosed with Genetic Protein S Deficiency. I had so little Protein S in my blood my doctor couldn't believe I hadn't clotted earlier in life especially having flown overseas less than a year earlier. Like you, what got me was long car rides, three in one week.

My second DVT happened 7 years later when I was flying a lot to for work. I knew about staying hydrated and walking around. I wore compression socks for every flight and the longest flight I went on was around 4 hours long.

My point is we never really know when our physical bodies are going to betray us. The doctors can't explain it at all. How one time when my risks were so much higher nothing happens and then other times I clotted while doing everything you are supposed to prevent it. I don't add this to scare you but to more encourage you to live your life the best you can. Having Protein S I was given the option to go off or Coumadin after my first DVT which I did. They left it up to me with the disclaimer that if I clot again I would be a lifer.

I hope some of that helps. Talk to your doctors and be open to their advice and if you don't like what they are saying get a 2nd and even 3rd or 4th opinion if necessary. Best of luck to you.

It's so true. About 12 years ago, I was on a 13 hour flight, in coach and I didn't get up.... not once Crazy I know but I hate flying and I hate even more people who feel the need to get up every 5 minutes. But I didn't get a clot from that flight, or the year before that when I was on a 8 hour flight, or the time I drove cross country with my friend 6 years before that, spending between 10-12 hours in a car driving. I was also on birth control during all those times as well. Which leads me to also wonder, if I'm so prone to clots, why didn't my birth control make me clot. I'd been on it for over 20 years.

I guess I don't have much of a point here but more an observation about how, well, how hit happens. And, to echo what BlackMamba said. It's not precise and when we talk about odds and chances, it can seem pretty random.

Man, our bodies are complex and amazing.

haha... I meant SHIT happens, not hit happens. My "S" key has been sticking a bit on my lap top. Hit Happens :)

Hit Happens?

Why, yes, yes, it certainly does. :-)

I gotta echo what RMB said. I was on birth control (multiple types over several years) starting in 1995, but I didn't clot until 2005. Why is that? I've got tons of air travel (including a couple of international flights) in my history too and never clotted as the result of one of those. Also, many long car trips that never caused an issue.

What happened in 2005 to cause that first clot? I'm sure the birth control played a part but I can't imagine that's the whole story. And the second DVT? Perhaps the progersterone-only BC played a part there too ... hard to know. And with the PEs? I've got no idea what caused those at all. All those years I had all sorts of good reasons to clot and I didn't ... then I've got no risk factors and wind up in the hospital with multiple clots in a both lungs.

Honestly, clot research says that the single biggest factor in whether you'll clot again is whether you've clotted before...and that's what most doctors look at because their goal is to keep you ALIVE. Many many of us don't have genetic factors or even obvious risk factors and yet we just keep on clotting. There's a surprising number of "clotters" out there who never find out the WHY ... they just know that they DO.

Thanks to all of you for your replies.
One good thing is that I do not appear to have any side effects from the Warfarin. My hair appears to be thinning but I am over 60 and I think that would have happened anyway due to my age.
We will be retiring in a few months. We plan on taking many long walks as the New England town that we will live in has many parks.
I have been spending way too much time on the couch with the cat watching TV while my husband has been putting in 12 hour days on his job. That will end soon. Although I am a very active person I look forward to being much more active and enjoying life.

I think this is just a wonderful new beginning for you, whether you're on warfarin or not. I've been on warfarin for several years now and I gotta say, the longer you're on it, the less hang ups most of us have about it. It just becomes so much part of your daily routine that it's like anything else in your life, you know.

Whatever you decide, it sounds like you've got great years ahead of you. In fact, I'm a little jealous!

No doubt! We went to New England for our honeymoon and it has such charm! Would be a lot of fun to live there!