Hi @kathiemk, I found out after the second time I had a pulmonary embolism that I carried the High Factor VIII gene. It's my understanding that the test was not available the first time I had the various blood factor tests in 2007. So between the first time and the second time (2019) I was on no blood thinner treatment after the first initial 7 months in 2007. And I had no known issues for the 12 years in-between. I did have a couple of times where I did get my leg checked as I was experiencing single leg swelling but they all turned out negative. I was told it was important for me to act upon suspicious swelling even if it turns out to be nothing as it's better to be safe with my history. I now am on a maintenance dose of Eliquis 2.5mg twice a day and have been doing well.

My factor Viii numbers are on the "lower" side of high, in the 160's through 200 typically over the past several years. I have now had most of the other genetic tests done as well when you have high factor Viii and I do not have anything else, just high factor Viii.

I've decided to just live life. Try to be healthy and minimize risks as I'm able. Find a good doctor you believe in. For me it was also a deciding factor in where we chose to live (a good medical facility that knows what the condition is and how to treat it gives me peace too).

Both of my kids have inherited it. For them it gives me peace of mind that they know. Neither one has to receive any type of blood thinners currently, but if either have surgery or if my daughter has children, etc it's good for them to have this information so they can take the necessary precautions as needed during those times.

I tend to be more calm about this condition than some. But I also had to come to terms with it and know that I'm doing what I can to increase my odds of a good long term prognosis. Information for me helps, for some it causes anxiety. Find what works for you, do what you can and make changes as appropriate (recommended by your doctor) to be the healthiest you m, and live life. It's precious, we are blessed to still be here and fortunate for great medical care that helped make that happen too.

Wishing you the best as you navigate through your care.

Heidi2020