Sunday, February 15, 2009

Can we know too much???

Anyone who knows what happened to land me in the hospital the first time, knows I learned a very valuable lesson from that. We must take an active role in our own health care. You must be your own advocate. You must do your own research, only go to doctors you feel totally comfortable with, get second opinions and trust yourself, if you think something is wrong with your body... 9 times out of 10 it is. Insist that you get the medical help you need. So since then, I have taken a very active role in my medical care and knowledge of what is going on with me and my health. I actively research my medications, other medications, my diagnosis, my doctors, etc. But my question now is... can we know too much?
I was researching my clotting disorder... very much in depth... and this is what I found... I'll just write down the highlights for you.
Prothrombin 20210 Mutation Factor 2
Prothrombin is the protein in your blood required for blood to clot. Too much prothrombin means blood clots will form.
It is an inherited mutation of one of the prothrombin genes.
2% of the U.S. white Population has the clotting disorder.
The risk of DVT(Blood clots in you legs/arms) and PE(Blood clots in your lungs) increase with age. 1 in 10,000 people in their 20's get them (let me remind you, I was that 1). 1 in 200 people in their 70's get them.
Having a blood clot in the past (which I have!!!) increases the risk of another.
Estrogen birth control increases risks of blood clots by 16x. It also increases the risk of developing a clot in the brain.
Progestin only birth control does not appear to increase the risk of blood clots in the majority of women but it is not known whether they are safe for women with pre-existing clotting disorders.
Hormone Replacement Therapy increases the risk of a blood clot by 2 to 4 times.
Pregnancy Dangers:
There is an increased tendency to clot 6 weeks after giving birth.
Pregnancy increases the blood clot risk by 5 times.
P.S. Those statistics were for the average woman... now for me...
1 out of every 1000 women with a prothrombin mutation will develop a blood clot during pregnancy.
Prothrombin mutations may also lead to other complications... may contribute to still birth, 2nd trimester pregnancy loss, placental abruption and preeclampsia.
It also may lead to infertility.

So those are the highlights... do I know too much... of course not. I need to know this.. all of this. I need to be aware of every danger... every no-no... every side effect of my clotting disorder in case I come across a doctor who doesn't know everything he/she should know before he/she tries to treat me. But you must admit... it's not all roses and sunshine... it's kinda scary... and certainly not what you dreamed about when you were a little girl. I guess for a while now, I haven't really known if I wanted to have kids or not. To me, it was more about if I found the right guy to have those kids with. Well now I have found the right guy, but I might never be able to have those kids... and if I do... it could be a very scary and complicated process.

I'm going to leave you with some knowledge I think we should all have...
The signs and symptoms of a blood clot:
pain
swelling
redness
warm to the touch
unexplained shortness of breath
chest pain
coughing with blood
And I'm going to add one of my own: cramping almost like charlie horse feeling in my calf

You don't have to have a clotting disorder to get a blood clot... long plane/car rides will do it... try to move your legs... get the blood flowing even if you can't get up and walk. And there are pleanty of people who have a clotting disorder who will go for years, maybe even their lifetime without knowing. But if you get the perfect storm of events... it can be very dangerous. Remember... we can never know too much!

1 comment:

Anonymous said...

Good info, yo. Knowledge is power. FYI, you're not 1 in 10,000, you're 1 in a million!