I too have factor v leiden (FVL) homozygous. I discovered it at age 69 with a thrombosis in my arm. It was treated with 40 days of heparin shots followed by three months of cardioasprin. Unfortunately the risks were not correctly assessed; I should have been more curious and less engaged in wishful thinking.
9 months later I had a DVT in one leg and sizable bilateral PE. Luckily I was hospitalized immediately and started treatment with high dose heparin while being tested and CAT with contrast media confirmed PE.
Treatment was standard Xarelto (rivaroxaban) dosage: 21 days of 15 mg 2x a day, followed by 18 months of 20 mg 1x a day. Recent ecography exam showed clots mostly dissolved, D-Dimer is < 500 (466). Next month I will reduce Xarelto to 10 mg 1x day. Repeat tests in 3 months. The reasoning was 10 mg gives nearly similar protection as 20 mg (based on studies), while reducing risk of bleeding.
I wonder what triggered the initial clot at the age of 69. I gave birth at 35 and had no issues.
My mother had DVT in her 50s, but at the time FVL was not discovered. Years later she had a stroke at 86 and was put on Pradaxa, but she wasn't tested for FVL. So I wasn't aware I was potentially a FVL homo or heterozygous until my episode. There are strokes on both sides of my family two grandmothers and one grandfather; FVL may have been a contributing factor and explain my homozygous status.