Deep Vein Thrombosis (DVT) Support Group
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Here is some information that you may find helpful. I asked a leading blood clot specialist about his take on what you had posted since his answer would be more in-depth that what I could offer:
"FVL testing, if done with the genetic test, is still reliable after a liver transplant, as the test is done on white cells that come from the bone marrow.
Some labs do testing for Activated protein C resistance. That test may be normal after a liver transplant, as it is done on plasma and some of the circulating plasma factor V is made in the liver, which now produces normal FV.
However, the FVL individual who received a liver from a non-FVL donor may not have the slightly increased clotting tendency any more that a true FVL patient has. These issue is a little complicated. The thoughts are as follows: Most of our clotting factor V is produced in the liver, from where it is excreted into the plasma. It then circulates in our blood. However, some factor V may also be produced in the bone marrow, in the precursors of our platelets (termed megakaryocytes). Research has not satisfactorily clarified this production issue. The bone marrow factor V is stored in the platelets, which then circulate in our body. When we have an injury, either the freely circulating plasma factor V, or the factor V that is stored in platelets and gets released at the site of injury, helps us stop bleeding. Which of these 2 sources of factor V is more important, is not known.
This patient should probably get routine VTE prophylaxis, independent of this complex thought process about the FVL. I would likely not test him for FVL or APC resistance."
R/Tom
If I'm interpreting this correctly, I think I'm hearing the following:
1. He can still be accurately tested
2. If positive, while he may gain some benefit from the transplant (in terms of decreasing chances of the impacted of FVL), he should still undergo usual precautions that someone with FVL would go through.
Can you clarify what the following means: " I would likely not test him for FVL or APC resistance."
Thanks again. I love to understand what's going on and anything related to my father's health is even more important to me.
Of course, genetic testing to rule out any known thrombophilia is secondary to the surgery and something he may wish to consider further down the line. Has he had any clotting problems himself or on his side of the family in the past?
With you being heterozygous, it means either your mother or father (or both) passed it down to you. Here is an article which discusses the genetics of FVL:
http://stoptheclot.org/News/article143.htm
His possible knee surgery is not scheduled at this time, so that isn't an immediate concern. Just something on my mind since my clot came after less invasive knee surgery.
Thanks for the links. The information available is amazing and so helpful.
It's hard to find a balance between reading interesting material but still trying not to obsess over my my or my father's medical care.