I've had 4 DVTs and 4 or 5 superficials. I can't remember anymore. However, all of mine were caused by hormonal incidents. The first and worst was due to birth control when I was 19. I did the 9 months of Coumadin and then went off it. Didn't clot again for 6 years, right after I delivered baby #1. I had two more DVTs and some superficials following that one. Stayed on Coumadin for 9 months, went off it, and was back in the hospital with another one within less than a month (pregnancy hormones still in my system). That's when they tested me for FVL. I've been on Coumadin/Warfarin ever since. That was 9 years ago, and I haven't clotted again at all, even though I've had several surgeries, another baby, and even a hysterectomy.

On the flip side, though, I have a friend who is FVL positive, and she's never even clotted. They tested her because her sister or someone tested positive. She just takes a baby aspirin every day and is fine. She's had two kids, and she did heparin shots while pregnant.

Having FVL doesn't have to be anything horrible. It's just another color in your rainbow. :-)

It's a life changer, but it's not. My entire immediate family has FVL, and we live quite normal lives. None of us are coumadin lifers (at the moment, knock on wood). I had a DVT at age 23, my sibling had a superficial in the arm at age 19, my dad had a superficial in his ankle last year, but no incidents in my mom and other sibling.

As I read through these responses, I didn't see much mention of hetero (FVL from one parent) or homo (FVL from two parents). I tested positive for FVL hetero.

I have had one superficial clot in my arm from an IV and one DVT after knee surgery. I did 6 months of warfarin (stopped 6 months ago).

I was honestly relieved to hear I tested positive. It stopped the "why me" feelings.

My understanding is that FVL hetero isn't a huge risk for unprovoked clots. I know some people clot for no apparent reason, but for me I am pretty confident that I am safe from clots unless I am in a situation with higher risk. If it does happen, I know what to look for now, and I'll try to get anything checked out immediately. For increased risk situations, I will take precautions. I definitely won't be taking any hormones and I might re-think elective surgery if I'm in that situation again, but even in that case I think the extra precautions can keep me safe.

I am thinking I am hetetro. she didnt say but said one of my parents must have had it and that my risk was low.

I had 3 clots at 19 (wilst on birth control, didnt know i had factor ll Leiden) DVT and 2 PE's
I then clotted whilst on warfarin in 2010, PE in each lung
I then clotted again whilst on warfarin in 2012,. PE

I think it is VERY rare to clot on warfarin though!

I was just diagnosed as well. To confound things I also have a PFO, which is a small hole in my heart that allows clots to go through to my brain. I had a TIA whilst on Coumadin a few weeks ago. I'm going to a Hematologist next month to see what is in my future. It's good to hear how many of you are living a normal life with Factor V

For me the biggest worry is waiting for another clot to happen since that seems to be the norm. Also makes me sick to think I may have passed this down to my kids. I was reading posts on the Factor V Leiden group - not a good place to go...everyone seems so unhappy.

i had a dvt 10 months ago had a ct scan done and was told there was no residual clotting. and 2 weeks there was my 2nd dvt. and now have been having pain in my groin and now my right leg is hurting and some discoloration around my ankle which kinda sucks. i have the factory 5 leiden and was told i will be prone to more clots

RE: hetero vs homo FVL - all my fam is hetero, except my sis is homozygous.

RE: Life after clotting - People take their dx of FVL different ways. Some get really bogged down in it, some go "ok" and move on. Even though you move on, it still wiggles in the back of your brain, and that's ok. Have I made a few different decisions since my dx? Yeah, but life is pretty much the same. I don't wake up thinking "today is the day I'll clot again." You just can't do that to yourself. If you're not past that point, hopefully you will be soon. Like physical healing, emotional and mental healing takes time, and everyone's on a different timeline.

Even though we run a higher risk of clotting, there are so many preventative things you can do that are lifestyle - eating healthy, exercising, etc - I've taken cooking classes and I run/walk half marathons and have had so many neat adventures now! I was 23 when I clotted, and I plan to be around for a ridiculously long time, Lord wiling.

All that to say, FVL (or F2L, or prothrombin, or whatever), isn't the end of life as you know it. Not everyone will understand (and honestly, I've told almost no one), but they don't have to. You have to come to your own peace and your own normal and be the best YOU that you can be in this life.

I'm hetero FVL and a lifer on warfarin. My first DVT was when I was 18. I had to have 5 angioplasties and 3 stents placed. I was taking birth control. My second DVT was when I was 26. My clot was unprovoked, my doctors don't know why it happened.

It's not fun to have an illness but like anything else you manage. My life is no less fulfilling because of what happened to me. You take the bad with the good.

Honestly it's only a minor hassle. It's just taking blood thinners and getting a lab once a month to not get sick again.

I wouldn't get too worked up over this. Besides most of us on this forum are rare cases anyway chances are you wont be in our camp.

Lynn it seems like another clot is the norm because you're basing that assumption on a handful of people on internet sites, like Food alluded to. Not everyone who has genetic factor hangs out on blood clotting forums and the ones that do usually the ones that reclot. I suspect there's many more people who have this who never clot again, or even at all.

I agree it's something you just have to find some peace with. It's funny but for people who've never been given a definitive reasons for their clots would probably find relief in this diagnosis. Funny how perspectives can be so different based on one's situation.

You have a right to grief and your worries, but seriously, it's something you don't have to lay awake at night feeling bummed about it and guilty over what you passed on to your kids. It's the nature of having a family that certain genes are passed on. I mean, no one has control over that, unless the already are aware they have some genetic issue and decide to have children. But sheesh it's not like a character flaw simply because you have a blood clotting factor.

Also if it's going to cause you a great amount of stress worrying that you're going to get another clot, you could talk to your doc about getting back on anticoagulants, if that's something you think would be beneficial to you.

I have a chronic disease so I get the idea that you have a disorder and it's a bummer to know you have it forever, but really, how you move forward, how you see yourself, how you decide whether to live in fear or live well, that's all a choice. Those unhappy people on the Factor V Leiden group, they choose to be unhappy.

I love that line from Shawshank Redemption, "get busy livin' or get busy dyin'" because it's so freakin' true. Everything's a choice.

Hope you don't waste another second of your life lamenting this. It's wasted energy. You are alive, informed and whole still. There's not much most people could ask for.

I gotta agree with RMB on this one. Sure, you've got it, but so do lots of other folks. At least now you know and you can be proactive about taking care of yourself and your family.

My husband's family is awash in Factor V, but my FIL travels internationally on a regular basis and is even married to a woman who lives part-time in Singapore. My husband's aunt and cousin both have it too, and both have happy, healthy kids; neither one has ever clotted. His sister was negative, but they tested her before she started on BC, just to be sure.

It's really very manageable and it can honestly be quite helpful to have a solid diagnosis when managing these things with your family and doctors. Me, I've had to argue my way into Lovenox shots after surgery ... something I think wouldn't have happened if I had been able to point to a solid diagnosis and force the docs to deal with that. There are some blessings to having an identifiable clotting disorder, as opposed to being one of us who clots "for some reason."

Even so, it can be hard to wrap your mind around something like this. Take some time to grieve this change in your self-perceptions, but do realize it doesn't guarantee you'll ever clot again. It might just mean that you're safer and better informed about clots, symptoms, and causes than the vast majority of the population.

Thanks guys. I hopefully will get to the stage you are all at - just isn't happening yet! Might look into some counselling. I am a worry wart at the best of times.

I think that's a good ste. I'm not by nature an easy breezy, roll with it kind of person and tend to feel anxious a lot. Counseling can definitely help with that.

I was born to worry. Seriously, if it was an Olympic event, I'd take the gold every time. That being said, this just is what it is. There are so very many worse things that could happen. And I do understand completely about the concern for the kids. I worry about my two boys (ages 9 and 7) as well, but what can we do? All worrying about tomorrow will do is steal the joy from today. And I try to look at it in terms of what would change if they WERE positive. The very most important thing is that we know 100% for certain that I have this freaky deaky disorder. That means that we are now aware that we need to watch for similar signs in our kids. When they have surgeries or whatever, we are able to alert the doctors so that they can take the proper precautions as well. Can you imagine how horrible it could be if you had FVL and hadn't been diagnosed? Knowledge is power, my friend. I thank God every day that He is allowing me to live with this disorder rather than die from it.

And I second what everyone said about not judging your future based on anonymous strangers from one internet board. The whole purpose of being here is for people to find others who have similar problems. You don't go searching out a forum for support when things are hunky dory. :-)