I have factor V, was diagnosed back in 1998 after getting a PE a month after a c-section and being put on birth control. Since then I have had 4 DVTs and another PE. Any time I do not take my coumadin I will form a clot. My FVL is very active.
I just got married in March so now my household income increased to over the guidelines for the Medical Plan I was through our city. Since I have no health coverage and coumadin has to be monitored, I am at a stand still. As a household we make just over the income bracket to qualify for any medical assistance programs, but not enough to be able to afford to pay cash for everything. I have been out of meds for 5 days and I have called every doctor I know... I'm lost.
I have been reading about alternative medicine for coumadin such as Cod Liver Oil with Vitamin E, etc. Does any one have any experience with any of this? Since my status of medical coverage is iffy most of the time, I need something I can substitute when I am unable to take coumadin. Doctor's won't just refill your prescription if you aren't being monitored and since Oncologists aren't giving away services, I just don't know where to go from here.
Honestly, I am terrified. I can't imagine that there isn't some sort of way to "treat" the clotting factors of FVL without coumadin; what about people with the disease that live in areas without access to coumadin, do they just clot up and die? There must be something, right?
Any suggestions, ideas, comments would be helpful. I am just so high risk for clotting, without my meds I am really scared and don't know what to do.