Hi Heidi,

I registered to post to reassure that you'll be OK.

I was dx'd with Elevated Factor 8 more than 20 years ago when I had a severe back injury. It was discovered when I was already in the hospital for said injury (partial paralysis due to swelling in the back). I was given an epidural and a day or two later the physical therapist came to my room to see how far I could walk. I took about two steps and down I went. I knew I was going to pass out but had no time to react. When I came to, they had called a code so I several emergency people around me. A traveling nurse insisted that I'd had a PE. Fortunately, the dr on my case listened and ordered chest x-rays which essentially showed multiple pulmonary emboli in my lungs.

They gave me lovenox shots which I continued with a home for several days and then went on to a blood thinner.

When I went to my first hematology appointment three months later, the dr. told me that my factor VIII level was the highest he'd ever seen for someone who survived. Long story short, it suspected that the trauma of injury kicked the factor VIII higher than my normal state which plenty elevated enough. I should also state that the test for elevated Factor VIII had just been developed about a year prior. Given my age at the time, they made me case study and my hospital system started making it a matter of routine to screen certain patients for blood factor issues as a result, though I personally have never met anyone else with it but apparently they did start identifying more people with factor issues.

I was told I'm one in a million (just like someone else who posted and also that the Elevated Factor VIII is genetic so I would have always had it but just didn't know it. That's the theory but we haven't been able to prove it through my parents so we wonder if it skipped a generation.

Anyway, twenty years on, I hardly think about it although I *totally* understand how you feel at the moment. I've been very active and it hasn't slowed me down at all. The only thing I do wish is that I'd known that you can safely have babies. They didn't know that then and my dr discourage me from trying to get pregnant as it is high risk. I was told I would have miscarried without treatment during pregnancy. Years later, I was told that it's manageable after all.