Pulmonary Embolism Support Group

Why is there no way to edit your post on here???? I always see typos/grammar issues after I hit submit!

jayce,

I was diagnosed with Factor V Leiden (homozygous - 2 genes) back in 1996. Feel free to ask any question.

Do you know if you are heterozygous (1 gene) or homozygous (2 genes)?

Here are some links to information regarding FVL written by colleagues of mine:

Factor V Leiden Q&A:
http://www.stoptheclot.org/faq/faq...#factor%20V%20leiden

Genetics of thrombophilia (blood clotting disorders):

http://www.stoptheclot.org/natt_pu...

Also, my good friend Deb Smith of California has collected a lot of useful resources on her webpage located at www.fvleiden.org

Knee and hip surgery is the leading cause of hospital acquired DVT/PE. I had my hip replaced this past December and pretty much directed the Orthopedic Surgeon to ensure I was on anticoagulant medication following surgery. In general, Ortho Surgeons are reluctant to use anticoagulant in fear of bleeding. The following story discusses this:

http://www.stoptheclot.org/News/ar...

Regards,
Tom in Connecticut

Thanks for the info Tom!

Factor V Leiden affects over 5 per cent of the caucasian population so it is not so very rare.

Some aflictees, especially heterozygotes, may be pulled off of warfarin depending on circumstances. As for age in itself being a factor, I do not know if they are telling you that you are too young or too old. If they say "too old" then I have a 98 year old relative who has been surviving on warfarin for atrial fib for the past 12 years.

FVL positive generally means that if clots form then they may grow somewhat unchecked over the course of days, weeks, or months. Rarely would the situation create an immediate emergency without ample warning, though if dealing with bonehead doctors you may slowly get in trouble while they twiddle their thumbs as described in the second paragraph at http://www.stoptheclot.org/learn_m... .

Most people with FVL do not know it and the overwhelming majority will see no ill effects, so your son may remain safe.

Hi Jayce,
I am heterozygous for FVL. So are my Mum and my sister. Apart from my mum having a DVT after her fourth pregnancy (oh, and my PEs this year, of course) there is no known family history although plenty of my cousins are bound to be FVL positive.

Personally, I don't think you need a medical alert bracelet as the fact you are FVL positive will not affect emergency treatment, i.e. should you pass out on the street or get knocked over by a car. I think it would most likely confuse people as they would see the bracelet and think you passed out because of this unknown 'FVL' thing. If you are on coumadin/warfarin that is a different matter as this info would affect your emergency treatment (look for bleeding, take to hospital immediately, vitamin K, check INR etc.).

Since I have only been diagnosed once with PE (yep, I also 'had it in my head' according to previous doctors) for the moment I might only be treated with warfarin for six months to a year. As I am only heterozygous they expect that to be enough (still waiting for some tests before the final decision is made).

Of course if I take a long flight, or get pregnant or need an operation, I will be treated preventatively. I'm quite happy with that.

If you are homozygous FVL positive that is a different matter. Do you know whether you have one or two FVL genes? As far as I understood from here homozygous pretty much means coumadin for life.

There is one positive side to all this. Researchers believe that the FVL gene developed to protect mothers from hemorrhaging after child birth. A woman with FVL was more likely to survive child birth and so have more children. That's how FVL evolved and spread. The same goes for cuts. People with FVL tend to clot faster thus losing less blood and protecting themselves from infection. Interesting, huh?!

My husband is the one who was diganosised with a saddle pulmonary embolism, but I have Factor V and also mthr fthr gene (something like that). Do not feel guilty about possibly passing this gene to your son, which you may not have. I say this because well first, obviously you can't help your genes, but my husband does not even have this gene and still developed PE. Also your son can be tested and then be aware of it and may be able to save his life because of it. My family and myself were tested for this gene after the death of my teenage niece. This knowledge can help save our lives because we know to be cautious with hormonal drugs (such as birth control) and other possible causes that may lead to PE.

I too have wondered about a braclet for the factor. I do let any medical provider I see know about it.

Thanks for your responses!