Heather was diagnosed with overproduction of Factor VIII in 2001 (my levels are three half times higher than normal), aged 41.
It is a rare condition, but both my parents were found to have higher than average factor VIII on screening.
My condition came to light out of the blue with a life-threatening pulmonary embolism (PE), which affected my heart as well at the time. Then a week after discharge, I had a deep vein thrombosis (DVT) while on warfarin. The clot blocked the femoral vein in my left leg. I was in and out of hospital for some time. However, with some adaptions to my life I was able to return to work and normality.
I am on life-long warfarin and self-administer heparin when my INR falls below 2.5. I self-test my INR at home as my INR can be very erratic. However, I have taught myself a lot regarding managing diet, and exercise levels both of which affect warfarin levels.
I was fortunate to receive very good gynaecological care at Queens Medical centre Nottingham as the big dose of warfarin I take adversely affected my periods.
I am lucky enough now at 60 to find myself in good physical and psychological shape thanks to some of the changes I had to make to my life. I have found, there is always a silver lining in any adverse situation.
Heather C