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hi does anyone out ther e have Factor V Leiden?

Posted by @piglit in Just Want to Talk, Jan 7, 2012

Cobdition of Dvt's and PE'S

Tags: deep veinthrombosisi


Posted by @piglit, Jan 7, 2012



Posted by @piglit, Jan 8, 2012

I would be interested in hearing from people that have had problems with deep vein thrombosis and pulmonary embolism. I have been dealing with this for the past ten years . I am now 54years old. I am on comaudin for the rest of my life. I was only diagnoised with Factor V Leiden about 2 years ago.


Posted by @debs1, Jan 9, 2012

I do, along with my 2 daughters, mom and sister. Only my sister is on lifelong coumadin. Me and 1 daughter (15 yrs) have each had 1 dvt in calf...treated it with heparin and follow up coumadin only.


Posted by @piglit, Jan 9, 2012

Hi Debs 1 thank you for your reply and take care


Posted by @kk, Jan 27, 2012



Posted by @lisasantoronassar, Mar 31, 2012

I have factor 5 leiden diagnosed 12 years ago i have been on and thrown pulmonary emboli's on comaudin, lovenox and now i am on 12.5 mg arixtra sub q still getting pe's which are all in stu which means they are forming in my lungs and not as dvt's in my legs mine is a very unusual case and complicated by having multi organ involved lupus I do not however carry an antibody that you can have wth lupus that can cause blood clotting. I do have a filter in place just as extra protection. very frustrating and scary have had over 2 dozen pe's I have had several embolectomys and tpa. I woulld lke to respond to PIGLIT if you have had and have been developing dvt's and pe's(on comaudin) you need to go to another med such as lovenox you need to talk with your doc i am suprised or rather shocked that it has not been done. This is nothing to fool around with. there have been some new drugs that have come out that are called light weight heprins and there is no need for constant ptinr blood testing.


Posted by @piglit, Mar 31, 2012

Hi lisa So glad to hear from you. I developed a tencms clot in my leg ten years ago. When the scan was done it had shown that the dvt was only in the leg. However, later on in the day in hospital I couldn.t breath, hence I had mutiple pe's on both lungs and one travel through the main artery to my heart. Lucky to be here. I was placed on heparin, clexane, asprin to thin everything down. Then I continued to get many superficial clots. About two years ago I just started to have dvt's in my legs. and had two prior to this last christmas at the same time. I have been on comaudin for ten years and will be your life. I haven't had anymore pe's since the first epsiode. I too am a very rare case as this as you know is not the usual thing to occur. I through dvt's on perfect inr;s of 3. In Australia the new medications have only just come out and are not passed through our laws as yet. Still in the trial period. Because my inr is so unpredictable i can be to high at risk of bleeding or too low a risk of clotting it is never stable. I have to have blood tests weekly. I thank you so much fior contacting me. I feel very lost at times trying to deal with this I have the top heamatologist here in Australia and he is wonderful. Please keep in touch and I hope that you stay as well as you can Piglit

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