factor V leiden

J

jdgothtech

New member
Hi ,
First timer here found out last year that I have Factor V leiden.They did the test when I had a clot in 2007.I had never heard about the rare genetic thing,til now,and found reading about it very interesting.I', adopted so I dont know which parent I got it from.Now I have another clot,and my doctor put me on Lovenox shots every 12 hours for a month.WOW!!and Oh joy:((.I hear this factor V thing is pretty rare.Just was wondering if there are others on here with this,and what they have to say about it?
 
hi quilter and welcome to the boards. but sorry you have to even be here looking for answers. interestingly, my mom found out she had this too in the very same presentation, with a clot, then subsequecnt testing to prove she just had way too thikened blood that was casued by the lieden deficiency too. other than getting your INRs checked and just being regularly on some type of blood thinning med to keep the blood from even forming new clots is pretty much the atandard of ongoing treatment. they just need to keep doing very close monitoring of the INR with any blood thinner. my mom is actually on coumadin and has been since she had a stroke back in 2002? she did fully recover but before her blood was really regulated she ended up with another clot in the subclavian that showed up with the very tip of her forefinger actually turning black? very crazy let me tell ya. but they placed an actual stent in there and everything got much better pretty quickly. but for the past few years now, everything has pretty much normalized as long as she stays on her current set dose of the coumadin,and also getting her INRs checked like every two weeks i think?

there IS a good 'blood disorders' board here on these HBs that is right down below here in the 'B" section that i do believe has at least some people with the same thing you have with the factor V leiden deficiency too? i would pop in there and see what they are dealing with with their factor v. hope they can help you with this. good luck with your Dx of this hon. FB
 
I've been diagonsed now for 26 years... it's been a very long road. I'm still trying to find a site that tells the long term effects. If you have any questions I'll try to answer them. I use to take coumadine... now on lovenox. Which seems to be alot easier to maintain a good PT Level. Hang in there.
 
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