Hi Guys. So after my previous post of discovering DVT (which is now pain free and dispersed) and 8 days in hospital, which led to a diagnosis of SLE, I was then discharged.
I was discharged before the results for 4 of my blood results returned (Anti Cardiolipin Abs, Thrombophilia Screen, Lupus Anticoag and B2 Glycoprotein) and told that they would return this week and I would be given an urgent Haematology and Rheumatology appointment for this week. I am yet to receive an appointment for Rheumatology but my Haematology appointment came through yesterday and it for June 4th 2015!!!
I'm not fully sure what the haemotology appointment is for but what the hell am I suppose to do until then? If I need treatment and the doctors are being real about the seriousness of my Lupus, why are they happy to wait for treatment to begin? Also, if this is the delay for Haematology then how long will I have to wait for Rheumatology?
The hospital discharged me with daily Clexane injections at 97.5ml, in which they have only given me 20 syringes of. Am I expected to continue with these injections until I am seen?
What has annoyed me most is that in 29 days my husband and I are due to travel for 5 months and as I feel completely fit and healthy at the minute, I am now concerned that we are going to have to postpone my trip just so the healthcare system can fit me in, which is going to have implications for our finances, our jobs and living situation (we rented our home to tenants).
I'm only starting my Lupus journey and frustration is already setting in. For others who have been battling this illness for a longer period or with more severe symptoms, I can only try and empathise.
Is this a common experience of Lupus patients??? Have others been diagnosed without all of their results returning, as I find this strange practice??
Any advice on any of my questions and how to move things forward would be much appreciated!!