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 was diagnosed with PE in February 2009 by accident in the ER. Since I had no known risk I had some genetic testing done and the results were positive for Factor V Leiden. I knew right then and there we needed to make an appointment for our 19 year old daughter who was at the time on birth control pills. As soon as her doctor heard the news as well as being reminded of me creating a breast cancer family history she took our daughter off the pills. Told her she should be tested for Factor V Leiden as well as the BRCA 1 & 2 markers for breast cancer. So I decided it would be better for me to be tested for the BRCA markers as to try to avoid this in our daughters medical history ~ I always said if my daughter or sisters needed me to do this I would because I already had the past diagnoses. My oncologist did not agree with me and the testing. It sort of made sense because there is no known history, but Iam rethinking this.
Any way my daughter had the Factor V Leiden test done. She got the results back and she is negative for Factor V Leiden. This is such great news. She got her dad's genes here and not mine thankfully. I was so hoping this would be the results. She was so upset hearing from her doctor about the risk of a positive result and the future of high risk closely monitored pregnancies. So now I am going to talk to my oncologist again and hopefully do the BRCA testing so we know where our daughter stands. I want to be able to provide a medical history for my kids so they will know for future reference.
My parents passed away young and never really got regular medical care so I never knew any of this information.
Any way my daughter had the Factor V Leiden test done. She got the results back and she is negative for Factor V Leiden. This is such great news. She got her dad's genes here and not mine thankfully. I was so hoping this would be the results. She was so upset hearing from her doctor about the risk of a positive result and the future of high risk closely monitored pregnancies. So now I am going to talk to my oncologist again and hopefully do the BRCA testing so we know where our daughter stands. I want to be able to provide a medical history for my kids so they will know for future reference.
My parents passed away young and never really got regular medical care so I never knew any of this information.
A lot of doctors report factor V Leiden tests as positive or negative, but you should get a copy of the test report. I had a PE a couple of months ago and they originally told me I was factor V Leiden negative. On further inspection, I saw that I actually was a heterozygous factor V Leiden mutant.
So everyone has two copies of every gene. You probably remember recessive and dominant genes. Well, one copy might have a mutation but it is recessive because the other copy is dominant and gets expressed.
For factor V Leiden it is not so simple. Both copies of the gene are active. If you are unfortunate and have the Leiden mutation on both genes, you are going to have real major problems with clots. However, if you have the mutation on one gene only (heterozygous), then you are still going to have problems because that gene is still busy creating clotting factor v that is impervious to regulation by protein c. Sorry to be so technical, but the bottom line is that you still have too much clotting factor in your blood if you are a heterozygous Leiden mutant.
So you need to find out if your daughter is heterozygous, because if she is, she will need to stay off the birth control pills. Heterozygous Factor V mutation increases the risks of getting a clot by 5-7 times and that risk factor goes up even higher when you add in birth control pills.
Sorry to hear about your troubles, and I hope the best for you and your daughter.
Her doctor (gyn) is who took her off her bc pills. Our daughter was not happy becuase this was the only way to regulate her cycle. She's been off for a few months now and some months she has her cycle and others she does not. I personally did not want her to take them with the history I created for her. But I knew she needed to regulate her cycles ~ although now I read it is fine not to have a cycle each month.