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factor V leiden

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Old 01-15-2010, 11:04 PM   #1
Join Date: Jan 2010
Location: texas
Posts: 1
quilter05 HB User
Question factor V leiden

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?

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Old 01-17-2010, 09:42 AM   #2
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Re: factor V leiden

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. **
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Old 07-22-2010, 11:24 PM   #3
Join Date: Jul 2010
Posts: 1
BftBeth HB User
Re: factor V leiden

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.

Old 01-16-2011, 07:13 AM   #4
Join Date: Jan 2011
Location: Topeka, KS. USA
Posts: 1
brandecrews07 HB User
Re: factor V leiden

I was diagnosed with Factor V Leiden in April 2009 during my 3rd pregnancy. I had blood clots in both lungs and am blessed that my husband was with me or I would be dead now. I found out that it is a family thing and so far 2 of my cousins also have it. I am on blood thinners for life and did the Lovenox shots while I was pregnant...they are no fun, but hey you are alive so that is the positive to doing them as you should! Can't give you a lot of info on it, but will let you know if i do hear anything new.

Old 01-16-2011, 08:22 AM   #5
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Re: factor V leiden

I was also diagnosed with Factor V 8 years ago. I , however , have a singke mutation they call it . I have never been on any meds for this , been through 3 pregnancies , and a surgery and have never had any clotting issues ...knock on wood... just had surgery last month and when this was brought up during my preop my surgeon said that I had a single mutation ans she was not worried and that they put the pressure socks on everyone after surgery anyway so she was doing nothing different for me.

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