Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

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Heart, Blood & Circulation
/ Factor V Leiden Support Support Group

Hot Weather

Urlacher
Urlacher
Really having a tough time dealing with the weather here in Chicago lately. Really cannot handle being outside in the heat for to long. Only at work when I am focused on a task to do can I really tolerate it. Have been getting pains in my side for quite a while now on and off. I still after 2 years have a tough time accepting that I have this blood disorder. Taking coumadin for the rest of my life just really sucks! I have never felt the same since the P.E. Lately I have had alot of issues just focusing and staying alert and every time I get a pain in my side I freak out. I thought I was past these issues over the last 2 years but its a life long disorder. I think the heat has alot to do with it. Does anyone have similiar issues. Really trying to move on but its hard to deal with the physical pain anymore, on top of it 6 back surgerys dont help neither. My doctor says that in 25 years of practice he has only had 2 patients with FVL and I should be really happy I have survived to this point, and I try to use that everyday to motivate myself to live a long and happy life. Stay Cool everyone!
deleted_user
deleted_user
I never even knew I had this disorder till my daughter died last year from it. The only symptoms I can think of getting from it is that i bruise very easily, otherwise I never had anything happen from this disorder. I should have been the one that died from it, but instead my 16 year old daughter did cause the doctors do not mention people taking a blood test to see if you have it before going on the pill. I see you holding a daughter in your arms. Please know when she gets older that she needs to know the pill can be very harmful to her if she has this disorder.
Urlacher
Urlacher
I am so sorry for the loss of your daughter, when I read the entry you had written about the incident, I couldn't help but cry. I do have a daughter she is 7 now and I have been told by my doctor that all 3 children should be tested. I have three older sisters and only one of them tested positive. My mother was negative and my father has not gotten tested yet. I never heard of this disorder neither and when I had my P.E. they told me I had about an hour to live if I wouldn't of came into the E.R. I did some research and it said only about 200,000 people in North America have been diagnosed with FVL and about another 2-3 million people have it and might never have any symptons or any problems and don't know they even have it..
deleted_user
deleted_user
At the age of 64 my dad sufferd a bi-lateral PE which was 8 years ago. Last July I ended up in the ER with a sub-massive bi-lateral PE at the age of 44. My dad and mom and her mother also take Warfarin and we're all lifers. With this history my dr ordered the FVL test which came back positive, however, my parents have not been tested. I then had both of my children tested and they are negative. I had a coworker who had a DVT, tested positive for FVL and so did her daugher.
I struggle with anxiety of having had a PE. And this heat wave is terrible. I am flying in a few days and started back taking my anxiety meds because every little twitch gets my mind on overload. And from other posts I've read it is not uncommon that we struggle years after. I will be thinking of you both. The heat should be moving on they say by tomorrow - let's hope so. I'm headed to Mexico and believe it or not it's cooler there.