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  • Factor V Leiden - anyone have it?

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    Old 08-19-2003, 10:27 AM   #16
    lnmore
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    Hi:

    I am 39 with two children. The first was a "normal" pregnancy. Then 3 months later after I had started birth control (two weeks to the day) I had a pulmonary embolism. VERY painful. In the hospital for a week. I got off birth control immediatly and despite other efforts was pregnant again within months. That pregnancy was deemed "high risk", but we both came thru it fine with Heparin shots twice a day. I even had a csection and all went well. My doctor says that I need to take an asprin a day and that is about it. My problem is: Now that I know that I have FVL, I cannot get health insurance, at least not with the companies I have applied to. Do any of you know who would write health insurance for a self employed person with FVL?

    Thanks!

     
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    Old 08-21-2003, 04:25 AM   #17
    bettybygosh
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    hi everyone
    just a note to let people know that you can still get a blood clot on coumidine, i was working outside last week and had a pulmonary embolism , clot broke off from my leg and you all know the rest. i went to the hospital and had a greenfield filter put in, it was a piece of cake the surgeon and pulmonary specialist at the hospital say if you have fvl and have had an embolism, good idea to get one put in and get a team together to follow you who are educated in fvl and related problems. i am home after 6 days, waiting to get my levels up to 3.5 or 4.0 my i.n.r. was at 3.0 when i got the clot, so all you people out there be careful and stay active and healthy and get your team together and educate yourself, i am going to be starting a web site sort of a clearing house for the latest in research, genetics and hemo. the drs said they will contribute so i will let you all know when i get back from boston follow up. good luck to all

     
    Old 08-22-2003, 08:19 AM   #18
    paperclip
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    angelmagic....sounds familiar. i found out though, by having a bout of ischemic colitis (clot to the colon). I have a healthy 7 year old daughter, had no problems (don't know if i had factor 5 lieden then???), but i want to have another & was told i'd have to have an injection of heprin throughout the pregnancy. I also had to go off the pill & was told to quit smoking. Thats my question for you....did you quit & if so, how? i don't want to go on the patch because i want to get pregnant. i know once i find out i'm pregnant i'll quit, but until then, i'm having a hard time...i did cut down to about 4 or 5 cigs a day. any thoughts? thanx.
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    Old 09-05-2003, 11:44 AM   #19
    angelmagic
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    Quote:
    Originally posted by paperclip:
    angelmagic....sounds familiar. i found out though, by having a bout of ischemic colitis (clot to the colon). I have a healthy 7 year old daughter, had no problems (don't know if i had factor 5 lieden then???), but i want to have another & was told i'd have to have an injection of heprin throughout the pregnancy. I also had to go off the pill & was told to quit smoking. Thats my question for you....did you quit & if so, how? i don't want to go on the patch because i want to get pregnant. i know once i find out i'm pregnant i'll quit, but until then, i'm having a hard time...i did cut down to about 4 or 5 cigs a day. any thoughts? thanx.
    Hi Paperclip! Ya know, it wasn't easy, but it sounds like your on the right track if your down to 4 to 5 a day. That's how I quit, I just told myself I wasn't buying another pack after this one is finished. I work out of my home so I had to find something to keep myself busy when I got that craving, so I would hop on my tread mill. Not for long, maybe 10 to 15 minutes, just enough to take off the edge, and get rid of the anxious feeling of wanting to light up. Just think of this, you'll be alot healthier without it, think about your health. I know its hard but you can do it if you put your mind to it!! I feel sooo much better without it!! Next time your trying to quit just ask yourself if you control that cigarrette or does it control you? Good luck, I hope this helps, I'm here to help support you all the way, you can do it girl!!


     
    Old 03-17-2005, 05:58 PM   #20
    Bifrons
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    Re: Factor V Leiden - anyone have it?

    I was diagnosed with Factor V Lieden back in April 2003. 4-5 years prior to that, I had been hospitalized for DVT (Deep Veinous Thrombosis) in my left leg and embolis in my lungs. There wasn't much follow through at that time. In April 2003, I was hit with the same thing. A strange coincident was I was hospitalized and the time the news was airing the funeral of David Bloom (Reporter that died in Iraq from DVT and embolis). This time the test showed that I had Factor V lieden. The terms used were "genetic mutation" and "anomaly". I was also told that FVL makes one 7 times more susceptible to DVT.So now I take a daily dose of 10-12.5 mg of Warfarin Sodium for the rest of my life. Later that year, my brother was hospitalized with a clot in his right leg. I suggested he get check for FVL. He said the test came back negative. I told him to get a second opinion. My family seems to be prone to circulation problems. As far as what causes this "genetic mutation", I'm not sure. In talking with my parents about it, I brought up the facts that my father use to handle atomic bombs in the military and my mother remembers seeing mushroom clouds, from testing in Nevada, rise above the mountains in Utah when she was a girl. My mother has M.S. I should probably do more research on this being that it will be with me for the rest of my life. Sorry for ramblin'
    .

     
    Old 05-04-2005, 12:31 AM   #21
    ddelwood
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    Re: Factor V Leiden - anyone have it?

    Hello, I also recently found out on top of my anti-thrombin III deficiency I also have Lieden V disease. It is a missing protein in our blood. It is a inherited disease, my 32 year old brother died before we were diagnosed, with multiple pulmonary emoblism. I have had many, many, episodes a huge mesenteric vein thrombosis that damaged my small intestine so it is difficult to absorb nutrients from food, I must eat NO chemicals at all, since this causes great pain in my abdomen. It was in my liver, gallbladder, spleen, stomach, small intestine, pancreas, and it was a miracle I survived! Since I have had pulmonary embolism, have taken a medical trial where I used lovenox injections in my tummy twice a day for two years, I lost 1 inch and bone mass, so that turned out not to be a good remedy, I take coumadin, but have gotten clots while taking it and been within the correct INR too. They say that Lieden V is somewhat coumadin resistant but is the only thing to treat this with. I am a 54 year old woman who has had problems with clotting since age 20. I have had 16 surgeries over the years since each organ one at a time gets a clot, lost both ovaries to blood clots, then a hysterectomy, had 1/3 of my large intestine removed due to pre-cancerous polps. Lung surgery, and on and on, after each episode of surgery I naturally get my normal bloodclot as well. I am going to the Mayo Clinic soon to find out if I can learn more and see what they can do or at least find out what is wrong with me. I weigh only 103 lbs used to weigh 125 and am 5'5, I am wasting away. Eating is difficult when you know you will have pain. So I eat only once a day, something has to give. I have been researching my blood disorder for many years, I will have answers soon to the Lieden V disease as well. I hope I have helped somewhat as far as clearing things up. Hope to meet some people I can relate to out here, thanks for having me. Dawn

     
    Old 05-14-2005, 05:38 PM   #22
    Einsteinbrother
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    Exclamation Re: Factor V Leiden - anyone have it?

    Hi,
    My best friend was diagnosed positive after reccurent blood clots ! now
    He is taking oral anticoagulant drugs and he must check the boold fluidity every weeks or 2 . I tried to find some website about the treatment of factor V mutation by gene therapy but didnt find any article ! i tried lun uinversity nothing ! Any one know where are the research on of this genetic disorder ?
    thanks

     
    Old 05-16-2005, 06:33 AM   #23
    happyelf
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    Re: Factor V Leiden - anyone have it?

    hey all--
    My MIL was diagnosed w/this after ankle surgery-whe then developed blood clots. My SIL and niece got tested right away and are both positive for FvL. My husband refuses to get tested--his mom told him there was "no reason to get tested; there's nothing they can do about it anyway." I was told they will test the kids only if the parent is tested first and is positive. DOes anyone know if this is part of routine pre-surgical bloodwork? It probably isnt'--but it's just a thought--2 of my kids have had eye surgeries--w/no complications.
    Thanks, HE

     
    Old 05-17-2005, 07:00 PM   #24
    Joellewillow
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    Re: Factor V Leiden - anyone have it?

    Hello, I was recently diagnosed with one gene for factor five...my proc and s are borderlind and my tPA activator test came back abnormal. Does anyone else have all theses factors wrong with them? Has anyone had problems being a carrier of one bad gene. Also how long do blood clots stay in your body? Thanks for any response.

     
    Old 06-03-2005, 07:03 PM   #25
    willbee
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    Re: Factor V Leiden - anyone have it?

    Hi ,I was diagnosed after my daughter had blood clots go to her lungs and almost died back in 1997.Factor V was something that most Doctors did not have a clue about back then. I was lucky enough to take her to Ohio State University hospital where they figured it out.

     
    Old 06-04-2005, 09:48 AM   #26
    Ga Lady
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    Re: Factor V Leiden - anyone have it?

    my father in law has Factor V and his blood won't think even with Caumidin (sp). He was hospitalized the first of the year and almost lost his life due to anemia and the blood being so thick evne being on these high levels of blood thinner. He had a heart attack at the age of 39 and now they know why. His whold family has a history of early death. So the specialist insisted on all his children to be tested...Every one is positive except my husband. The main problem with Factor V ..we were told is that you can have a stroke or heart attack with no warning signs. It's a very serious condition. My husband's dad has now recovered from the anemia scare but he has so much pain in his legs from the blood clotting. He has been hospitalized for DVt and other things prior to this diagnosis. Factor V is something NOT to take lightly. It's very serious. For years this has passed down from generation to generation with them and no one knowing why they were dyin so young...Heart attacks and strokes ...Just all of a sudden. Well...My father in law was the one who FINALLy took the needed measures to find out why and what it was. I have a paper on the conditions but you can also find it on the net under Factor V Blood disoders also. I looked it up when they discovered it.

     
    Old 06-15-2005, 11:56 AM   #27
    osunshine
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    Lightbulb Web sites

    http://www.ihtc.org/Disorders/factor.html



    http://www.thrombosis-charity.org.uk/aboutthrom_thrombophilia_congenital_prot einc.htm

    http://www.actpathology.act.gov.au/c/ap?a=da&did=1008510&pid=1059373329&sid=

     
    Old 08-30-2005, 05:54 AM   #28
    Ttremayne
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    Re: Factor V Leiden - anyone have it?

    Thank You For Your Help!!! I'll Look It Up.

     
    Old 09-03-2005, 11:11 PM   #29
    momtobrody
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    Re: Factor V Leiden - anyone have it?

    I also have FVL and was first diagnosed 8 years ago. I had DVT in one leg and the circulation isn't that good anymore. I now have developed vertigo. Anyone else have vertigo along with FVL?

     
    Old 09-27-2005, 04:43 PM   #30
    efotiades86
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    Unhappy Re: Factor V Leiden - anyone have it?

    hello everyone, my name is erica and i am 19 years old and was diagnosed with dvt in the left leg about 3 weeks ago. the doctors had no clue what had caused my blood clots. i had one blood clot in the groin and one in the left calf. they soon did genetic testing and found out i have factor v leiden. after reading everyone's post about this disease, i am sort of very scared, and maybe some what confused. some of you said you had pregnancy issues, does that mean when i get married and decide to have a baby that the baby and i will be at risk of blood clots? do people who have fvl have to stay on coumadin forever? what can i do to prevent clotting even though i am on coumadin? does anyone know if it is normal to have an extended period while on coumadin? usually my period only lasts me 5 - 6 days, but this is my first period since i was put on coumadin and i am on my 8th day already. is this weird, or normal? also, does anyone know if the swelling goes down after having dvt in the leg? it went down a lot already but whenever i walk on it, it gets a little swollen. i would appreciate it if anyone can answer any of these questions for me. thanks a lot.

    erica

    Last edited by efotiades86; 09-27-2005 at 04:46 PM.

     
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