I found out I had Factor V after three DVT's and in 2004 I had as serious as it can get with PE's in both lungs. My heart and lungs have damage. I am on Coumadin for the rest of my life. My level of treatment is 3.5 to 4. I my level changes often and is hard to keep in those limits.

Old clots are coated and remain in place in the legd, causing vericose veins. Ted hose is a must! I would think the Dr. would have kept you on meds. If you are female and in child baring years this is nothing to go untreated.

There is a new drug called PRADAXA that is well worth looking into. I go to the VA for my treatment and new Medications are slower to get.

I think if a Gen. Practioner has delt with you need a Hemotologist to work with your Factor V. Hope this helps.

I'm a 44 year old healthy female. I developed two DVT's in my lower left calf. I was first treated with Coumadin, but have now been taking Lovenox injections twice daily. I also tested postitive for hetero Factor V. It has been five weeks, and I am not seeing the progress that doctors originally told me to expect. I have now been told that it's post phlebitic syndrome. My calf is red, swollen, and painful to walk.

I would like to hear experiences others of had with PPS, so I can best speed a recovery. I began wearing the compression hose. I am not yet ready to begin exercise, as walking is still a struggle.

Kristin, I am curious how you are progressing?

This is factor V-Lieden with Stevens Johnson disease. With Stevens Johnson you have alergic reactions to the drugs used to help while having a pulmanary embelism. This is my son he started having troubles in his 20's.This is a terrible disease and it needs to be reconized that even if you inherited one gene it can be just as bad so Dr.s keep your ears open for this and dont take the one gene factor as not dangerous.

Also my daughter just gave birth to twins at 28wks she was diagnosed with V-Lieden one gene and her twins are very small 2.3 pounds and 2.6 pounds. They are in a fight for thier lives but because she has only the one V-lieden gene I don't think they are putting the two together. I am the mother of these two children I have one gene of V-lieden I have had 3 DVT's in the last 4 months I am on coumadin forever if u need to talk send me an e-mail tammyfi4@aol.com

My daughters twins are to small to test for V-Lieden yet, one of them has a heart murmur they might have to operate but they are holding off because the baby might have V-lieden i'm glad they are realizing the clotting factor risk with him. They put pic lines in both the babies today hoping the one (Kole) with the murmur will respond to medicine for his murmur.The other twins name is Riot and is in more of a stable condition as of present.My daughter had a C- section even though it was recommened that she have them vaginally due to cloting factors but she did very well, she is pumping breast milk like crazy and Riot will get some soon. They are holding off on Kole still for breast milk. Say a prayer for the little fellows for me please. May the Lord Bless all of you with V-Lieden and your family with V-Lieden.