Apologies in advance if this post is a bit long!
Last February (2014) at the age of 37 I suffered massive bilateral PE. I had no previous serious health issues. I was rushed to A&E and immediately thrombolysed. By all accounts I should have died.
After a few weeks of recuperation I was allowed home and placed on Rivaroxaban for a fixed period of 6 months. At the time of my discharge from hospital I don't think many of the blood tests that were supposed to have happened had been done (like the lupus anticoagulant test)
I was advised by my Cardiology consultant a few months later that after this initial 6-month period of being on Rivaroxaban they advised that I should be taken off RIvaroxaban for a period of time and then re-tested to check for abnormalities.
When that 6 month period came around (October/November 2014) I had not been referred to a haematologist like I had been lead to expect and I started chasing my GP for answers. Only recently after months of chasing (late February 2015) have I had some progress.
My GP received a letter from the Cardiology Consultant stating that they no longer supported their initial advice! It now turns out that at the time of my initial consultation I had actually tested positive for lupus anticoagulant and that had they known at the time they would have placed me on Warfarin.
They have also stated that due to my age, the severity of my PEs and my family history (my cousin has Hughes Syndrome) that I should be on anticoagulants for life. This came as a bit of a shock
I have asked my GP to be referred to a consulting haematologist as I am very confused as to what is actually wrong with me. I asked my at the time GP if this news meant I had Lupus, which he confirmed was the case, but after reading things on-line I'm not so sure as lupus anticoagulant positive does not always mean the sufferer as full-blown Lupus? From my understanding my positive test result points towards APS/Hughes rather than full blown Lupus?
I'm terribly worried that I'm either poorly or misdiagnosed and that I may be on the wrong drugs for my potential illness. I have learnt from this site and others that Rivaroxaban is not really recommended for APS sufferers because trials are still ongoing, so I am fearful that I have been an inadvertent guinea pig for a year.
On the flip-side I have been lucky enough to have no recognisable side effects from being on Rivaroxaban and it very much suits my lifestyle. Just being in the hospital for two weeks showed me how many people on Warfarin are on the wrong dose.
I have little confidence in my GP and the consultants I have been referred to before now, and although I am hoping that talking to a haematologist will clear things up a lot I'm honestly a bit lost and not sure where to turn.
Any advice/information gratefully received.