Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I just got the results back from my blood tests during my visit to the Hematologist today, and I found out I'm positive for Heterozygous Factor V Leiden. As I understand it, the "Hetero" indicates that I inherited it from one of my parents. I think technically, both could have it as well (if hetero as well).
I wondering what others who have received similar information have done with respect to your family members. Have they gone to get tested as well?
My father has many health issues (liver transplant, stage 4 melanoma and many others) and he may be going in for knee surgery some time soon. I would like him to get tested soon, definitely before any other procedures that will have him on bed rest.
That leaves my mother and my sister. I'm wondering if they need to run off to get tested or only do so if they encounter other risk factors for clots (surgery, immobility, long flights). I'm thinking that if my father comes back negative, then we know that my mother has it.
I'm definitely going to educate them all on the warning signs of a clot. At least they know how serious it can be now.
Any thoughts or advice? I'd love to hear how others have handled it with their families.
I wondering what others who have received similar information have done with respect to your family members. Have they gone to get tested as well?
My father has many health issues (liver transplant, stage 4 melanoma and many others) and he may be going in for knee surgery some time soon. I would like him to get tested soon, definitely before any other procedures that will have him on bed rest.
That leaves my mother and my sister. I'm wondering if they need to run off to get tested or only do so if they encounter other risk factors for clots (surgery, immobility, long flights). I'm thinking that if my father comes back negative, then we know that my mother has it.
I'm definitely going to educate them all on the warning signs of a clot. At least they know how serious it can be now.
Any thoughts or advice? I'd love to hear how others have handled it with their families.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
My husband, however, has an extensive family history. His father is a warfarin lifer after DVTs and clotting disorder. His grandfather died young from clots. His aunt and cousin, I believe, are also positive for the clotting disorder. (Sorry, I don't remember which one, right now.)
But, my husband has opted not to be tested for the disorder. He has concerns that being positive, even with no history of actual clots, could make it harder for him to get health insurance and/or long-term care insurance. He is more than informed of the symptoms (having been on the ride with me through three separate clotting events) and just isn't too worried about it. I suppose I should mention that he has been on multiple international flights and has had several knee, ankle, foot surgeries. I think he kind of figures that he'd know by now if he had the disorder or not.
In your case, it sounds like your father has had numerous opportunities to clot, but hasn't. He has cancer, has had other serious surgeries, and has never clotted. Not that any of that says definitively that he won't ever clot, but just that maybe he doesn't have this disorder.
As for your mother and sister, I think it will hinge more on whether they feel like the knowledge will help or hurt them. If they're like my husband, they may not want to have "official" test results, but could still be super cautious with surgery and long fights and etc. Just because they don't KNOW for sure, doesn't mean they can't be cautious anyway.
There's a lot to think about with genetic stuff. Some folks are more amenable than others to being tested.
But I agree with Toss. I don't think it's absolutely necessary to have family members test.
I have no clotting factors, and have clotted twice. My brother got a DVT in his arm, a couple of years after me, after shoulder surgery. Given my history, his doc is considering life long warfarin for him, but my brother isn't sure he wants to do that. Totally his choice.
This isn't exactly the same but similar- my mom is contemplating having genetic testing done to see if her breast cancer is genetic, given our family history and that she has so much cancer on her side of the family (my brother had cancer, my mom's sister had cancer, my grandma had ovarian cancer and grandma's uncle had colon cancer ).
My mom said she's doing it for us, her children, so we know our risks. I said do not do the testing on my account. I don't want to know. And frankly, I get mamms every year, see my OBGYN every year, and get colonoscopy screenings every year for my ulcerative colitis. I mean, I can't be any more alert and vigilant about this stuff than I already am.
My point is that we and our families do what we can to prevent stuff, whatever that stuff may be, whether we have the genetic testing done or not. So that means listing family history when having procedures and what not, talking to docs about prevention etc.
http://patientblog.clotconnect.org/2010/11/19/thrombophilia-testing-%e2%80%93-who-should-be-tested/
Likewise, here is a patient brochure discussing the genetics of thrombophilia (clotting disorders) written by a very good friend of mine:
http://www.stoptheclot.org/natt_publications/fam_test.pdf
There is definitely no right or wrong answer when it comes to genetic testing, it's what you feel comfortable with.
For me, being Factor V Leiden Homozygous we knew our two youngs kids would be FVL heterozygous (wife has no clotting disorders). But, hemophilia runs on my wife's side of the family. Turns out our kids didn't inherited the hemophilia.
Again, it all boils down to you own personal choice and what you feel is right. The Genetic Information Non-Discremination Act (GINA) passed by President Bush did away with some of the concerns that many patients had regarding genetic test. Here is an article which addresses that:
http://patientblog.clotconnect.org/2011/08/10/thrombophilia-and-insurance/
R/Tom
Jan, than you for your comment. It made me remember that my mother is taking estrogen daily. I've asked her to talk to her doctor about that to help make the decision on whether or not she should be tested.
think you can look at predicting factors. Peace of mind too? for family members if they are at risk, prevention is everything. HEALTH CARE not sick care.
I agree with what you've said to some extent. Except that testing negative does NOT necessarily mean you won't clot. And testing positive doesn't guarantee that you will.
I've had three clotting events and I've had the genetic testing done twice. I'm negative for everything. I might have something that they just can't test for yet, but being negative in my case doesn't mean I won't ever clot.
Bazillions of people clot who are negative. And lots of folks with the genetic markers don't ever clot.
As for being cautious during and after surgeries and other risky activities, I think it should be par for the course with EVERY patient. Because, given the right situation, every person can clot and I'm thinking we should be more proactive about preventing those situations ever happening.
Of course, if there is a genetic history in your family, I think the tests might be more important, especially with women taking BC or HRT. And other family members can be more cautious, especially if they're considering one of those courses ...
BUT ... nothing about these tests is going to tell you at 100% whether you will or won't clot again. I still think it is totally up to each individual whether they want to do the expensive testing and wind up with that record in their permanent medical files.