I went to the Dr. on Monday. I seem to do this almost weekly as I shuffle between my Internal Medicine Doctor, Vascular Surgeon, Hematologist, and Gynecologist. I had been anxiously awaiting Monday's visit to the Hematologist because I was supposed to find out what kind of blood disorder, if any, I had. More tests were done besides the ones discussed, but those results aren't back yet.
I found out I have a few different clotting disorders. Most of this is pretty confusing, even after spending many hours researching. For those interested, I will explain what I know about them presently.
1) I was diagnosed with something called Factor V Leiden (FVL), that's the roman numeral 5, not "v". There is a really great website, http://www.fvleiden.org/ , that has answered a lot of my questions. FVL is a genetic condition which increase the tendency of the blood to clot, leading to sometimes serious and/or life-threatening complications depending on the location of the clot (which is what happened to me). Basically, I was at a 7 fold risk to clot abnormally than the average person. I was also taking birth control (maybe that's too personal, oh well), which I have learned increased my risk to about 35 times the normal risk for clotting. I am off that medication and am now taking a blood thinning medication daily called Coumadin to help keep my blood from clotting. While my situation was bad, it could have been much worse. Many women who have inherited FVL don't find out until they get pregnant and have multiple miscarriages or severe complications ( I guess it is good that I am still in college not trying to get pregnant or my story might have gone differently). As the website says, "persons with thrombophilia (FVL) wishing to have children should be aware of possible complications including stillbirth, preeclampsia, eclampsia." In some cases pregnancy is ultimately fatal to the woman. While this all is very scary, many women with FVL do have children. It is much more risky and they have to take shots of blood thinners daily to help prevent some of the serious complications. It makes me emotional to think about so I'll stop. ok, next result.
2) Another disorder that my DNA showed (I didn't just get my green eyes from my parents) was a mutation of something called the MTHFR ( I had a single copy of something called C677T). This enzyme is responsible for creating the circulating form of folate in the blood. Folate helps regulate homocysteine (which is damaging to the vessels). If its not present than there is too much homocysteine in the blood and this is associated with an increased risk of cerebrovascular disease, coronary artery disease, heart attacks, and blood clots. Sometimes in pregnancy, for those with this mutation (I hate that word), there is an increased risk for neural tube defects ( birth defects of the brain and spinal cord) due to low levels of folate. This is one of the reasons all pregnant women and those of childbearing age should take plenty of folic acid. I only had a single copy and therefore this genetic issue is less concerning, but I do take my folic acid daily.
3)I was positive for Lupus Anticoagulant (LA). This is something that is acquired, not genetic like the first 2 results, and it could have been a false positive from the heparin therapy I was on in the hospital when I got tested( I am hoping). However, at this time, my hematologist says I have this too. My first question was, is that like the connective tissue disease Lupus? He said not really. It is called that because many women with the disease Lupus are LA positive. According to http://peir.path.uab.edu/coag/article_3.shtml, LA is an acquired non-specific inhibitor that is detected in 1-2% of individuals. Chronic lupus anticoagulant is associated with a 30% risk of venous thromboembolic disease or arterial thrombosis, including stroke and myocardial infarction. LA is also associated with chronic spontaneous abortion. The hematologist said there is a chance it could go away (transient LA) as opposed to chronic LA. I am praying for it to go away.
I may have lost many readers already, but it is good for me to talk about. It is something I am fascinated with because I must learn about it and deal with daily to stay healthy. I hope the rest of the results are good.
Monday Jan. 26 I go to see my vascular surgeon. He is going to scan my legs again with an ultrasound to see if the clotting has gone away or not. The results may help him decide if they want to take me back to surgery and remove the filter in my inferior vena cava that is currently preventing another pulmonary embolus. I'll know more Monday.
I found out I have a few different clotting disorders. Most of this is pretty confusing, even after spending many hours researching. For those interested, I will explain what I know about them presently.
1) I was diagnosed with something called Factor V Leiden (FVL), that's the roman numeral 5, not "v". There is a really great website, http://www.fvleiden.org/ , that has answered a lot of my questions. FVL is a genetic condition which increase the tendency of the blood to clot, leading to sometimes serious and/or life-threatening complications depending on the location of the clot (which is what happened to me). Basically, I was at a 7 fold risk to clot abnormally than the average person. I was also taking birth control (maybe that's too personal, oh well), which I have learned increased my risk to about 35 times the normal risk for clotting. I am off that medication and am now taking a blood thinning medication daily called Coumadin to help keep my blood from clotting. While my situation was bad, it could have been much worse. Many women who have inherited FVL don't find out until they get pregnant and have multiple miscarriages or severe complications ( I guess it is good that I am still in college not trying to get pregnant or my story might have gone differently). As the website says, "persons with thrombophilia (FVL) wishing to have children should be aware of possible complications including stillbirth, preeclampsia, eclampsia." In some cases pregnancy is ultimately fatal to the woman. While this all is very scary, many women with FVL do have children. It is much more risky and they have to take shots of blood thinners daily to help prevent some of the serious complications. It makes me emotional to think about so I'll stop. ok, next result.
2) Another disorder that my DNA showed (I didn't just get my green eyes from my parents) was a mutation of something called the MTHFR ( I had a single copy of something called C677T). This enzyme is responsible for creating the circulating form of folate in the blood. Folate helps regulate homocysteine (which is damaging to the vessels). If its not present than there is too much homocysteine in the blood and this is associated with an increased risk of cerebrovascular disease, coronary artery disease, heart attacks, and blood clots. Sometimes in pregnancy, for those with this mutation (I hate that word), there is an increased risk for neural tube defects ( birth defects of the brain and spinal cord) due to low levels of folate. This is one of the reasons all pregnant women and those of childbearing age should take plenty of folic acid. I only had a single copy and therefore this genetic issue is less concerning, but I do take my folic acid daily.
3)I was positive for Lupus Anticoagulant (LA). This is something that is acquired, not genetic like the first 2 results, and it could have been a false positive from the heparin therapy I was on in the hospital when I got tested( I am hoping). However, at this time, my hematologist says I have this too. My first question was, is that like the connective tissue disease Lupus? He said not really. It is called that because many women with the disease Lupus are LA positive. According to http://peir.path.uab.edu/coag/article_3.shtml, LA is an acquired non-specific inhibitor that is detected in 1-2% of individuals. Chronic lupus anticoagulant is associated with a 30% risk of venous thromboembolic disease or arterial thrombosis, including stroke and myocardial infarction. LA is also associated with chronic spontaneous abortion. The hematologist said there is a chance it could go away (transient LA) as opposed to chronic LA. I am praying for it to go away.
I may have lost many readers already, but it is good for me to talk about. It is something I am fascinated with because I must learn about it and deal with daily to stay healthy. I hope the rest of the results are good.
Monday Jan. 26 I go to see my vascular surgeon. He is going to scan my legs again with an ultrasound to see if the clotting has gone away or not. The results may help him decide if they want to take me back to surgery and remove the filter in my inferior vena cava that is currently preventing another pulmonary embolus. I'll know more Monday.
I am so sorry you are having to deal with all of this!! I'll continue praying for you and Ben!
ReplyDeleteI am praying as you process all of this and continue to deal with this on a daily basis. I wanted you to know I haven't forgotten and I am praying.
ReplyDeleteI just got caught up on the specifics of what happened in December and the results you just found out. Whew! You are a walking miracle. I, as I am sure you do too, know that God is using this for His purposes. Stay positive!
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