my story :)

hi all! its great to find site!

i am 20, married and work as a massage therapist. i have been on warfarin for 4 years and for life, im told. here's my story-

when i was 16, i had a major DVT, (groin to toe in left leg) triggered by the pill, which i had been on for only 3/4 weeks. i was rushed to hospital, where i stayed for the next week or so, my left leg felt like a block of concrete, and as fit as i was, i suddenly had zero muscle tone or strength in it. i remember the nurses actually having to lift my leg off and onto, the bed when i would need to get up. Learning to use my leg again and walk etc was awfully painfull i remember.

My Vascular Surgeon told me id be on warfarin for 6 months, i wore prescribed pressure stockings on both legs & had blood tests every 2-3 days for the first couple of months till i had a stable INR. it took me 2-3 months before i was fully recovered- walking and going about life as usual.

On the morning of my 6 monthly visit, happily thinking 'great- everything's going back to normal, no stockings, no warfarin, no blood tests etc'!! i had a pretty big life changing moment, as did my family- i was told that i had a blood condition: Factor V Leiden, Homozgous- which i was told is extremely rare, and i would be on warfarin for life. My parents were tested and BOTH of them are carriers, which is also very rare. my 3 younger brothers all have 70% chance that they will clot and have the same condition. so things changed from that day- i was lucky to have mum and dad who took care of everything and helped me get used of the change.

i was told that i would most likely have swelling and ache in my leg for the rest of life also, and to this day, most nights, especially after big days, my left leg is swollen and achy, even though i wear my compression stocking everyday. my inr generally is stable (2.4) and my warfarin dose is generally between 5-6mg. except for when i have too many stir-fry's during the week with lots of greens! Vitamin K seems to be the only thing that knocks my INR around. earlier in the year our avocado tress were in season at home, so i enjoyed that way too much and ended up with my INR 1.6 !!! :O

a recent ultrasound showed that the clot is still there - groin to toe, even after 4 years of warfarin. which does scare me a bit, my younger brother has already had a clot but it dissolved within months of being on warfarin, as with many other stories i read. so i still am puzzled as to why mine is still very much there.

i have never really given much thought to taking warfarin or my situation really, i guess it was because i was so young and ive just grown up taking it everyday. but now, like other girls, im starting to think about it all, the long term effects / pregnancy etc. i dislike the thought of being pregnant and injecting celexane. i dont want to be taking warfarin forever, and im very much up for finding a natural alternative. even though the doctors think any natural remedy is ridiculous! i do believe there is something out there somewhere.

HI CodyLee,
Welcome to LADVT (Life After DVT) although you have been there as long as I have, you know how it is...
As oppose to you, I am Idiopathic, they never found out why I clotted back in 2007, they say that my chances of clotting again are way up there also, but the Med. Com. in Canada has come up wit the bright idea of giving patient like me who are going to clot again a break from anticoagulants.
My Hemotologist has always told me "when you clot , never IF, you will be a lifer on anticoags". So I have been off the junk since 2009 (I had bad side effects to warfarin)
Because of the damage done by the clot to all my vein valves in my right leg, I also wear the 30-40 compression sock or a 20-30 for when I ride my mountain bike (leaving room for muscles to expand...).

Like you, I wear my FUGLY like any other piece of clothing, without even thinking about it, because I know that if I don't, by the end of the day, my leg will swell up and it will hurt BADLY.

Here is a link to a shop that a friend of mine (another DVT survivor) has opened, might be some stuff that interests you...
www.rejuvahealth.com



Concerning natural ways as an anticoagulant, I have NOT heard of anything that would sway me to not use the medical ones when I go back on it and I base my research on other DVTers like myself who know the pros and cons of Warfarin and all the other NEW medication that is hitting the market as we speak.
We all hope that some day, we can find something that will fight DVT and not create other long time effect that will force us to take more meds. It's a viscious circle, take meds to fight something that was created because of other meds. Keep your ears open and so will I, let me know if you hear of ANYTHING...

Anyways, I'm glad you found LADVT, welcome aboard.

Denis

wohoo! love that website- made my day!!