LauraLu, I am very sorry about your nephew. Of course I don't know the answer to this either. But I am very, very sorry that you're having to now see someone you're close to now going through this too.

Man. Sorry to hear about your nephew. I assume they are going to be doing genetic testing on him?

But as to how we prevent it, I wish I knew. Stuff like this seems like it should have been preventable, but other than putting every person in the world on warfarin, I dunno.

Keep us posted on how he is doing.

Thanks to you both. I should have been the canary in the coal mine on this, but my situation wasn't enough to prevent a family member from going through it too. That's why I'm angry. It's not like we didn't know the possibility existed in anyone within my blood line - but that the knowledge didn't prevent the outcome here...that seems so futile to me.

I will post more as I know more. His PE sounds like it was pretty severe and he's still having problems breathing at this point.

You know what? Sometime unfortunately what we've gone through still isn't enough. My dad is super SUPER fortunate because for the past month I've seen him with a swollen, purple leg and begged him to go to the hospital, but he just wouldn't do it. And he's had a DVT before too, which makes this even more ridiculous! I don't know how he didn't get PE, because he did everything just as he liked, and finally after somewhere between 4-6 weeks walking around on this thing, he sees his doctor for something else entirely and of course has a DVT from groin to knee. I know your nephew's situation is very different, but I figure if my DAD, one of the very few close family members I have, wasn't freaked out by seeing what I went through....well how in the world could I expect anyone else to take it seriously?

Do let us know how your nephew is. I seriously would not wish PE on anyone, especially if it was severe. The good thing is he's being treated now so that's some comfort. I'll be thinking of you and your family.

Oh Laura, I hate hearing this!

So far as what to do, I don't know. We told our close family, and my uncle has FVL also. However, two of his kids won't get tested, and I have a lot of their kids (my second cousins) are about to hit the teenage years. They also travel internationally without taking precautions; their limited knowledge has no effect on their decision-making process and is a constant worry to me.

I know great strides are being made in genetic coding, testing, discovering new conditions, and also how precautions and drugs work with different diagnoses. I hope new therapies and discoveries are made to help our loved ones!

Hey Laura,

I'm sorry this happened. I don't know the answers either. I mean, I had a history of clots but no known clotting factors, and my brother clotted a couple of years later, and I think ok, are we all just sitting ducks, and do we just assume if one family member ever had a clot, regardless of the cause, we're all at risk.

I'm so glad Ben made it. What a thing. I'm sure your family is out of their minds right now.

Update: My nephew is in the ICU as he's developed pneumonia in both his lungs. I'm popping over to the PE board to see if anyone had this complication as a result of their pe's (I'm sure - lung trauma sets you up for pneumonia).
They've done a CT scan and will be testing for all the usual suspects, but right now the pneumonia is most concerning.