I had heard of blood clotting disorders before, but always the lack of clotting as in hemophillia. However, we discovered that there are clotting disorders that make you more apt to develop blood clots in an unfortunate way. In September of 2006, Meg had a swollen leg that was very painful. It did not go away and she kept going back to the doctor and finally they did an ultrasound and discovered a blood clot in her leg. Even though she went on the blood thinner injections, the clot embollized and went to her lung. This is very dangerous as 30% of PEs (pulmonary emobolisms are fatal). She was in the hospital for several days and is now on oral cumiden (blood thinner) for the rest of her life since she had a life threatening condition.
Since she was only 34 at the time, they suspected she might have a genetic clotting disorder and she got tested as did I. Turns out, we both have a genetic condition in the Factor V (there are 8 steps in the clotting process) step that causes the blood to be hypercoagulable. One bad thing is that she was on the pill (as I had been for almost 20 years at that point) and for a normal person, that increases the risk of blood clots by 4 times as much. With just the Factor V Leiden condition, this increases your chances of a blood clot by 7 times. Together, the risk is exponential, as my hematologist told me my risk if I continued to take the pill would be 1 in 300 of having a blood clot. Needless to say, I have not taken the pill in 18 months. I also take a baby aspirin every day as this has the effect of thinning the blood and has long lasting effects on platelet development reducing the likelihood that they will 'stick' together.
Turns out that Daddy has this genetic disorder (it is carried on the X chromosome) and since men only have one X, that is the one that Meg and I got. Daddy also had a blood clot at 51 that was unexplained. Interesting thing about this Factor V Leiden defect is that it was only identified in 1993 or 1994. Fortunately, we only have the one bad copy as Meg and I are both heterozygous (meaning one bad gene) instead of homozygous which would mean two bad copies and even higher risk of blood clots.
The other thing is that given my age and this condition, I will have to take a shot of heparin (blood thinner) each day if I decide to get pregnant - and I HATE shots. Even with the heparin shot, I will have about a 10% risk of developing a blood clot while pregnant. The most typcial problem during pregnancy is that it can cause a miscarriage because of clotting in the umbilical cord. And you can't take cumiden since it causes birth defects and the heparain shot goes into the bloodstream and does not cross the placenta barrier.
So I still don't know what I want to do about a baby and now I have this other thing to go along with it as I would have to take a shot a day over a nine month time frame. Jim is cool with it either way no matter what we decide to do, but I know he does not want to do anything to risk my health. The amazing thing is that Meg had a pretty normal pregnancy as the doctors could not beleive she didn't throw a clot while she was pregnant or shortly thereafter. Not only would that be bad, but once you have a clot, you are predisposed to have more.
If I ever have surgery, I'll have to be on blood thinner for a while afterwards as invasive procedures can cause the body to react with a clot. For more info:
http://en.wikipedia.org/wiki/Factor_V_Leiden
http://www.med.uiuc.edu/hematology/PtFacV2.htm
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4 comments:
Wow. That's kind of scary, Martha. As if having a child wasn't a hard enough decision. Have you guys considered adoption to bypass all the risks with pregnancy?
Well, if we don't have one the regular way then we probably just won't have one. My hematologist told me not to base the decision on this. She said that if I wanted to have one then don't let this be the deciding factor.
Of course, she doesn't have to have the shots! I think I am fine with it either way.
It has not been easy for me - Jim went to school for 3 years after we were first married, and I was the sole support. I still make much more than he does, and I don't have the option of not working or working part time. Plus, I know who ends up taking care of the kids and it will be me. Not to say that Jim won't help, but just to be real the woman ends up with most of the work and I can't give up any of my regular work so I have to consider that as well.
I'm sorry for the condition, MM, but thankful for the diagnosis. understanding of genetic factors and our health is quite fascinating and amazing! This is quite obviously good information for you to have. Peace.
Hi Martha,
I Googled "Factor V Leiden" under their blog search and found your entry. I too have FVL (hetero) and also MTHFR (hetero). There is a wonderful group of ladies on a Yahoo board called FVL-PG that talk specifically about conceiving and pregnancy with FVL. I too hate shots but when you look at the end result, 9 months for a life time of happiness with your child, the benefits surely out weight the risks, IMHO. I wish you all the luck!
Robin in Ohio
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