DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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Diagnosed: Factor V Leiden
belovedwarrior wrote in thrombi_support
Within the last week, I was diagnosed with having Factor V Leiden disorder. I am not certain how to phrase that exactly, but I am sure you know what I mean. I didn't have any signs or symptoms (unless the HUGE and unexplainable bruises throughout my body that I sometimes get is caused by that??). I was tested and a few days later a nurse called me back to say that I was positive; I had the disorder.

I haven't a clue what this all means. Of course I've scoured the internet but I've ended up feeling more frustrated. I don't have clots. It seems unlikely that I will develop clots? So I just go about my normal day-to-day business as if I don't even have this disorder? I tried to ask the nurse but she wasn't very informative. She basically said that I should avoid any medications that cause clotting (like the Oral Contraceptive which is why I was tested in the first place to see if I could take it). She said to also avoid decongestants for that reason.

Ergh.. what? I feel so helpless. Do I really do nothing? What kind of medications should I avoid? How do I know if it causes clotting or not. Obviously anything hormonal. I am a 25 year old, nonsmoker, healthy individual. I hardly ever take medication unless it's OTC painkillers (are they even safe anymore?).

Where do I turn from here?
Any advice would be greatly helpful. Thanks!

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I wish they would have tested me before putting me on birth control. It would have saved me from getting a clot, but I guess I would never have found out that I have Factor V.

As for what you should avoid, I guess if they aren't going to do anything, like put you on any medication or an aspirin therapy then you basically should be able to live a normal life. I don't know anything that causes clotting off hand. I just know there are things I can't take or eat a lot of because I'm on blood thinners.

Wow. They tested you for Factor V before putting you on birth control? I've never heard of anyone doing that before.

Anyway, I'm sorry about your diagnosis. I don't really know much of anything about FVL (I don't have it, I just have clots). But there is a website with some good info (http://www.fvleiden.org/) and they have a list serve specifically for people with clotting disorders that is very active and has hundreds of members. There's a lot of information there and I'm sure people could tell you what medications to avoid.

But mostly I think you live a normal life and mostly don't have to do too much out of the ordinary (as long as you don't start having clots). The exception to that is if you become pregnant. People with clotting disorders have to be more careful (and might have to be on blood thinners, depending on your circumstances).

Well, my mother and all of her siblings have FVL. I've known for awhile that I might have it but there was no need to test until I wanted to try the OCP. They found out because my uncle has had numerous clots in his legs. I know he's on medication and wears compression stockings, but the rest of the family is okay.

So, I've had awhile to deal with the fact that I may have it and I've always brushed it off as no big deal. Then when I heard the nurse say the words, "You were positive" I wanted to cry! She just quickly said to avoid any medication that causes blood clotting or highblood pressure because that would put me at high risk. On an unrelated note, a friend was telling me she had a stroke because some medication she was on caused blood clots, and it was just an OTC painkiller! Eegads. I feel at a loss. I am sure I am fine and the chances of me developing anything are really slim, but I'm still freaked out a little. A little knowledge is a dangerous thing.

I did check out that website and joined the mailing list. Hopefully I can figure this out. Thanks! :)

Oh, okay, family history. Got it.

It is really scary and I felt that same way when I had my PE - that I was getting bits and pieces of info from everyone and a lot of it was contradictory and like you said, a little info is dangerous. It was really frustrating. But I did find a lot of good (and some not so good, to be honest) information on the PE group.

Hang in there though. I think it's really scary any time you find something like this out, but it gets easier.

you should be fine. try to avoid sitting for long periods of time. tell a doctor about your condition when you get pregnant, before surgery or being placed on any new medications. beware that most medical personnel have no clue what clotting disorders are when you tell them the name. good luck and welcome to the club :p

I recommend visiting http://www.factorvleiden.org and http://www.nattinfo.org to get as much information as possible about the disorders associated with thrombophilia. Especially the first link. Since you haven't clotted, and you said some things that show you most likely have no other big risk factors for clotting besides the disorder, you may never clot. Some of the statistics I've read is that if you are heterozygous (carrying one gene) for FVL, only about 10% of heterozygous FVL people actually end up developing a clot. It's a bit different with homozygous.

Keep hydrated. Stay active. Don't smoke. If on a long plane ride, make sure to get up and move around, and again keep hydrated. Try not to end up in cramped areas. Let your doctors know if you ever need any surgery so they can take any precautions they need to, especially for orthopedic surgery. The list goes on and on, it's really just some common sense take care of yourself things, but you mainly won't notice anything. I highly suggest reading those sites to find out more about it.

And here's hoping you never see a clot in your life. ^_^

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