Antiphospholipid Syndrome · Warfarin

Testing 1,2,3…


The irony of the situation doesn’t elude me. The doctors are worried I have a blood clotting disorder, so they take me off the prescription that will keep me from getting clots in order to test me for said disorder. 

Well I guess I understand that they want to be thorough.  My initial tests in 2010 were positive but it usually takes 2 positives tests to get a diagnosis.  The second, while positive, was unfortunately performed after my DVT had been found and I was already on Coumadin. 

This THIRD round of tests was not much more conclusive – a few of the larger test lupus anti-coagulant and the venom test came back negative (both were positive at my initial testing). But one – IgG protein – was through the roof.  The hematologist actually commented that it was one of the highest results he had ever seen. So because of this result and the fact that I had had an unprovoked DVT  in past meant it was back on Coumadin for me.

 All of this testing and retesting has left me a little more aware at how hard it can actually be to get diagnosed.  Many times people who go to the doctors complaining of joint pain, fatigue, facial rashes etc can spend years and thousands of dollars trying to find a diagnosis to their ailments.  I was lucky the first go around. Since I went to a rheumy in the middle of a flare, they were able to properly test me for several possibilities. But the blood disorder has been a little trickier – if I hadn’t been aware of my body and about the changes in my legs, no one may have ever caught my blood clot. I didn’t present with overtly classic DVT symptoms – my legs swelled, but very gradually and I never had any bruised or hot spot on my leg. I did the research and voiced my concerns – even when the doctors seemed incredulous. It paid off – the DVT was found before it caused lasting or severe damage. 

Am I happy that I have to be on Coumadin for the rest of my life – no. There goes the tattoo that I wanted to get… but I’ll survive without it. Being on Coumadin also gives me a peace of mind, yes – I have to be more careful of my surrounding (which is hard for a klutz like me) but knowing my blood is thinned keeps me from worrying (too much) about every little pain.


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