Lynn, I don't know much about FVL or how it affects your veins, eye clots etc., but if I can offer any advice, it would be to maybe step away from that group for a bit. You have to remember that patient groups, like DS or the FVL facebook group are going to have many members who either had some rare complication, ongoing issues, problems etc that are not indicative of most people's experience. Also, these types of sites are usually more anecdotal based vs scientific based. That's not a bad thing, at all, but it's good to remember that when you start feeling frightened by others' experiences.

If you have questions and are concerned, these are things you should discuss with a hematologist so that you have all the facts.

I am going to follow your advice. It is seriously eating me alive!

I've gone through this a bit on another health issue I have, and it's so easy to get sucked into the really scary scenarios. You have to just shut it down. If something's not helping you or lifting you up, then step away. It's not healthy and serves no real purpose.

Take today to not think about any of this stuff. You deserve that.

I will completely ECHO what rmb said...she is awesome, and hit it on the nose. I also have FVL, but my experience has been more positive. I know a few people irl that are also positive, and who have had DVTs. Both of them are completely healthy, living a normal life OFF of thinners. Awesome, huh?? The other did reclot, so is on lifetime Xarelto, but is doing great. You need take rmb's advice...time to step away.

This kind of reminds me of when I was diagnosed with a genetic disorder called Gilbert's Syndrome after some routine bloodwork. It is basically a benign rise in bilirubin levels in the blood (jaundice). So, when I did an internet search, I found all of this horrible anecdotal information. It FREAKED me out!! When talking to my doctors, they basically said it is all rubbish. It is a common genetic anomaly, I have had it all of my life and will be fine. The only thing it causes is for me to look a teeny bit yellow from time to time.

I have totally been where you are. It stinks and I am sorry. You really will be fine. Hugs!! xx

I had my first and worst DVT at 19. I was in the ICU for 2 weeks while they did a couple procedures to try to rid me of it. That's the shortened version, lol. Anyway, I went off Coumadin after 9 months, and I didn't clot again for about 6 years, until I had my first child, when I had several more. It honestly could have been avoided if my doctor had been more proactive with the Heparin, but it is what it is (and is also the reason I switched OBGYNs after his birth). When he was 9 months old, I was diagnosed with FVL, and I've been on Coumadin/Warfarin and clot-free ever since. He's now about to turn 10. :-)

I do have a lot of damage in that leg, but the largest portion of it is from the procedures themselves and the fact that I let the clot go for 2 weeks before being rushed to the ER. I've never had issues with my eyes, other than my lifelong poor eyesight, lol. Nothing FVL-related, though. All of my clots have been in the same leg, but again, that was due to the extensive damage from the first DVT and the procedures.

To answer one of your questions, the disorder is simply a clotting disorder. It doesn't damage veins that aren't involved in DVTs. It's the clots that damage the veins, not the disorder.

All in all, I've been dealing with the DVT stuff for 16 years, and other than having to be a little extra careful in some areas, it's not that bad. Since the diagnosis after my first son, I've had several surgeries, including another c-section and a hysterectomy, with absolutely zero complications. It's like anything else in life. You just accept it and learn to work around it. It's really not that bad.

If you have something that's seriously bugging you always ask your dr. My dr. didn't say anything about my clot coming back and he's a specialist with F5. I have an appointment this week and I'll add that to my list of questions for him and let you know what I hear.

Have you gone to your appointment yet?

Lynn, step away from that group. I was on there but the fighting and wrong information was making me nuts.

I have factor V leiden. If you haven't had a clot, you won't have vein damage. You have to have active clotting to have damage to anything. My younger daughter has fvl as well, and has no issues. It's just nice to know so she can avoid birth control pills and when she is ready to have children she will use the fvl protocol.

The best advice you can get is to talk to your hematologist or vascular surgeon about what to expect.

If you are heterozygous for Factor V, you have an increased chance of clotting but it isn't automatic. My mother has FVL and clotted many years ago. She only took coumadin for 6 months and has never had another problem. My sister has FVL and has never had a problem. She just knows to avoid hormones now. I'm on anticoagulants long-term but not because of my FVL. If that is all I had, I would have been able to come off coumadin at 6 months.

I did have a clot. I was on birth control at the time for hormone issues. They figured that is what triggered the clot at the time. Then they found I had FVL - however the BCP still likely had more to do with the clotting since I was 50 years old.

I saw that facebook group and watched it for a while, but the misinformation and stories were waaaaay out there. Walk away and never look back at it.

I have FVL hetero, had two simultaneous DVTs, did anticoags for seven months and have no lasting effects. It's been 6.5 years. My entire family has FVL, but several of them have had no symptoms and the others have been minor.

It changes your life in that you're more aware of lifestyle, but it's doesn't really change your life, you know?

Hope that you can learn more about your condition(s) in a helpful way and receive the support you need.

Thanks! I will get off that facebook group. Some of its okay but most of the info puts my anxiety and depression way out there.

Had my appointment yesterday.. Asked the doc about repeat clotting. He said after year 2-3 of being off thinners risk of repeat is nearly gone.

What he also said to me, was he could find no reason for my clot to have formed. Nothing triggered mine. He ran all kinds of labs on me and the ONLY thing adding to my risk is my extra weight. Extra weight causes extra estrogin (if I understood him correctly) and that can trigger a clot. So I'll be working on getting my weight down (and that can't hurt at all) and just trying to be healthy.

If my insurance will pay he's taking me off coumedin/warfarin and putting me on the x one. I hope they pay it I miss SALAD! :) I'll only be on it 6 months. Lots of monitoring over the next few years, but it puts my mind at ease. I got lucky to end up with a great specialist that really cares about his patients. Hope you get the answers you need from yours to put you at ease.

In case you have to remain on warfarin... you can eat salad. The idea is to be consistent with your diet while on warfarin, not eliminate healthy foods.

That's true, rmb. I eat salad on and off all the time (not as consistent as I should be) and have never had it effect my INR.