I'm a fucking unicorn
So, I have not one, not two, but technically THREE gene mutations to do with clotting, but the third is insignificant.
However, I am his first patient that has both of the two main ones. He's treated plenty with factor v and plenty with the prothrombin mutation, but having both makes me extremely rare.
Well, the prothrombin one is only 2% in the Caucasian population. Factor V is a little more common, but no wonder they don't typically come together. At least I only have one copy of each.
He can give me increased risks of clotting with each (tenfold with the factor v, 3-5 times more likely with the other one) but there aren't studies quantifying if you have both. Unicorn, I say.
Even so, lifelong blood thinners has risks also -- each year about a 10% chance for a serious bleeding, and 10% of those are fatal, so 1% per year but that is cumulative, it doesn't just start over so 40 plus years on blood thinners stacks on a great deal of risk.
So right now the plan is 12 months for sure because of the clots in the lung, although he says what's in there may never go away (hence chronic PE) and after that we might look at the lower dose of Xarelto or a daily aspirin instead. Mitigate the risk some without taking on the full risk of being on blood thinners.
Once you add birth control into the picture the odds go up 35x or 16x respectively, so hrt will be out when I hit menopause. (I'm afraid to wonder what periods are going to be like on xarelto, guess I will find out. Soon, too.)
I mentioned having two daughters and of course he recommends testing. Using 23&me if we want to keep it off medical records, but the two genes aren't related so I have a 50/50 chance of passing on either -- 75% chance they got one, 25% chance they got neither or both.
Given Maxine being on lifelong estrogen, we all agree we should get her tested. To stay on estrogen she also may have to use blood thinners. But right now, we don't know enough to know. She's super worried, naturally.
However, I am his first patient that has both of the two main ones. He's treated plenty with factor v and plenty with the prothrombin mutation, but having both makes me extremely rare.
Well, the prothrombin one is only 2% in the Caucasian population. Factor V is a little more common, but no wonder they don't typically come together. At least I only have one copy of each.
He can give me increased risks of clotting with each (tenfold with the factor v, 3-5 times more likely with the other one) but there aren't studies quantifying if you have both. Unicorn, I say.
Even so, lifelong blood thinners has risks also -- each year about a 10% chance for a serious bleeding, and 10% of those are fatal, so 1% per year but that is cumulative, it doesn't just start over so 40 plus years on blood thinners stacks on a great deal of risk.
So right now the plan is 12 months for sure because of the clots in the lung, although he says what's in there may never go away (hence chronic PE) and after that we might look at the lower dose of Xarelto or a daily aspirin instead. Mitigate the risk some without taking on the full risk of being on blood thinners.
Once you add birth control into the picture the odds go up 35x or 16x respectively, so hrt will be out when I hit menopause. (I'm afraid to wonder what periods are going to be like on xarelto, guess I will find out. Soon, too.)
I mentioned having two daughters and of course he recommends testing. Using 23&me if we want to keep it off medical records, but the two genes aren't related so I have a 50/50 chance of passing on either -- 75% chance they got one, 25% chance they got neither or both.
Given Maxine being on lifelong estrogen, we all agree we should get her tested. To stay on estrogen she also may have to use blood thinners. But right now, we don't know enough to know. She's super worried, naturally.