We took our kids to the hematology department at Primary Children's Hospital yesterday. It was a really good appointment. I do feel better. I learned some things about factor V leiden (pronounced: factor 5 lie-den) and avoiding blood clots that I thought I'd summarize here.
The first thing I found interesting is that activated protein C resistance is usually the first test used to see if someone may have a clotting disorder like factor V leiden. It is a less expensive way to find out if they need to do the more expensive test to find out if you have factor V leiden or another clotting disorder. If you test normal on the apc test (activated protein c test) then you don't need to do further testing. If you show a resistance in the apc test then they have other tests they can do to find out if you have a clotting disorder like factor V leiden.
Secondly, each time a child is created they receive 1 gene from each parent for multiple things. Since I have factor V leiden heterozygot I received the factor V leiden gene from my Mom and a normal factor V gene from my Dad. Garrett tested normal so he has two normal factor V genes. Aimee and Aaron both got the factor V leiden gene from me. Victoria got my healthy factor V gene so she tested normal.
It is more dangerous for a female to have factor V leiden because of estrogen. Aimee was on loestrin which is a very low dose of estrogen. She was having lots of cramping and extra bleeding with her menses and the loestrin helped with that. What we didn't know is that estrogen multiples your risk of clotting. If we had known that she had factor V leiden and known of the complications that estrogon adds to clotting then we could have prevented her from taking estrogen. I quit taking estrogen while in the hospital with Aimee. I am not loving the menopausal effects, but I'd rather deal with them than the increased risks.
There are other risk factors that can increase the chance of clotting as well. Being overweight is one of those risk factors, so I have some changes to make. Being dehydrated is an additional risk factor because it thickens the blood. So it's important to drink plenty of water and remain hydrated at all times especially if you have factor V leiden or another clotting disorder. Regular exercise is also very important to help prevent clotting. So again I have another change I need to make.
Something I hadn't realized is that when taking a long trip in the car or on an airplane it is important to get up and walk around every few hours. Keeping the blood flowing regularly is crucial in clot prevention. The doctor said that drinking several cups of water before leaving on a long trip and then continuing to drink while on the trip and after will help keep the blood thin and reduce the chances of a clot.
Basically most of these are things that everyone should do. Having factor V leiden doesn't mean that something like what happened to Aimee is destined to happen to me, my son or my mom. In fact when people get clots they usually happen in the deep veins of the legs (dvt: deep vein thrombosis). Those clots are dangerous because they can travel to the heart or the lungs (pe: pulmonary embolism) and possibly the brain (a stroke). Aimee's clot was very, very, very rare. Chances of it happening were about 1 in a million or 2 in 5 million. It does happens in people without factor V leiden. Having that risk factor increased her chances, taking estrogen also increased her chances. She was also dehydrated, and so forth. So each of these things added to her risk of clotting which resulted in the sinus venous thrombosis (clot in the vessels leaving the brain) that caused her to leave us.
There is lots more I could say about that, but mainly it comes down to the fact that I wish I'd known earlier so I could have never allowed her to start estrogen and so many other things. However, we do the best we can with the information we have at the time and that is all we can do. I know God has a plan for each of us and that He is very aware of us even down to things that may seem insignificant. He loves us and I trust His will in knowing what is best for my daughter and our family, but I miss her so much and wish this hadn't happened.
We will know more about Aaron's protein S numbers when the additional test results come back next week. There is a possibility that since he had a sinus infection when they tested him that the s proteins could have been effected by that and they may actually be normal.
The proteins c and s both help to stop clotting. So low numbers increase the clotting risk and that is why we're concerned. I'll be sure to update everyone here when I find out more. In the mean time drink, exercise and get up and walk around every few hours. And please don't take estrogen unless you know you don't have a clotting disorder for sure.
~Wendee
The first thing I found interesting is that activated protein C resistance is usually the first test used to see if someone may have a clotting disorder like factor V leiden. It is a less expensive way to find out if they need to do the more expensive test to find out if you have factor V leiden or another clotting disorder. If you test normal on the apc test (activated protein c test) then you don't need to do further testing. If you show a resistance in the apc test then they have other tests they can do to find out if you have a clotting disorder like factor V leiden.
Secondly, each time a child is created they receive 1 gene from each parent for multiple things. Since I have factor V leiden heterozygot I received the factor V leiden gene from my Mom and a normal factor V gene from my Dad. Garrett tested normal so he has two normal factor V genes. Aimee and Aaron both got the factor V leiden gene from me. Victoria got my healthy factor V gene so she tested normal.
It is more dangerous for a female to have factor V leiden because of estrogen. Aimee was on loestrin which is a very low dose of estrogen. She was having lots of cramping and extra bleeding with her menses and the loestrin helped with that. What we didn't know is that estrogen multiples your risk of clotting. If we had known that she had factor V leiden and known of the complications that estrogon adds to clotting then we could have prevented her from taking estrogen. I quit taking estrogen while in the hospital with Aimee. I am not loving the menopausal effects, but I'd rather deal with them than the increased risks.
There are other risk factors that can increase the chance of clotting as well. Being overweight is one of those risk factors, so I have some changes to make. Being dehydrated is an additional risk factor because it thickens the blood. So it's important to drink plenty of water and remain hydrated at all times especially if you have factor V leiden or another clotting disorder. Regular exercise is also very important to help prevent clotting. So again I have another change I need to make.
Something I hadn't realized is that when taking a long trip in the car or on an airplane it is important to get up and walk around every few hours. Keeping the blood flowing regularly is crucial in clot prevention. The doctor said that drinking several cups of water before leaving on a long trip and then continuing to drink while on the trip and after will help keep the blood thin and reduce the chances of a clot.
Basically most of these are things that everyone should do. Having factor V leiden doesn't mean that something like what happened to Aimee is destined to happen to me, my son or my mom. In fact when people get clots they usually happen in the deep veins of the legs (dvt: deep vein thrombosis). Those clots are dangerous because they can travel to the heart or the lungs (pe: pulmonary embolism) and possibly the brain (a stroke). Aimee's clot was very, very, very rare. Chances of it happening were about 1 in a million or 2 in 5 million. It does happens in people without factor V leiden. Having that risk factor increased her chances, taking estrogen also increased her chances. She was also dehydrated, and so forth. So each of these things added to her risk of clotting which resulted in the sinus venous thrombosis (clot in the vessels leaving the brain) that caused her to leave us.
There is lots more I could say about that, but mainly it comes down to the fact that I wish I'd known earlier so I could have never allowed her to start estrogen and so many other things. However, we do the best we can with the information we have at the time and that is all we can do. I know God has a plan for each of us and that He is very aware of us even down to things that may seem insignificant. He loves us and I trust His will in knowing what is best for my daughter and our family, but I miss her so much and wish this hadn't happened.
We will know more about Aaron's protein S numbers when the additional test results come back next week. There is a possibility that since he had a sinus infection when they tested him that the s proteins could have been effected by that and they may actually be normal.
The proteins c and s both help to stop clotting. So low numbers increase the clotting risk and that is why we're concerned. I'll be sure to update everyone here when I find out more. In the mean time drink, exercise and get up and walk around every few hours. And please don't take estrogen unless you know you don't have a clotting disorder for sure.
~Wendee
Yay! I am glad that your appointment went so well. This is very good news. Hopefully Aaron's results are the result of that sinus infection. I'll be praying for you guys still.
ReplyDeleteI don't know if this will help give you any peace, but I believe that everyone leaves this world on time...even when it seems untimely to us and comes through an accident or the poor choices of others.
We are all bound together as individual threads in a grand tapestry woven together by our Creator. Our lives, regardless of how short or how long, serve a divine purpose for God. And so it is for Aimee's life.
Her loving example and light will continue to live on in the lives that she has touched for good and they will always carry her with them in loving memory for years to come.
(((HUGS)))
Thank you so much for sharing this information. It really is helpful for the rest of us. I know you miss Aimee more than words can say. You are always in my thoughts and prayers. I am anxious to hear how Aaron's test results come back. Hugs to each of you.
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