Wow, what a difference a day makes! Dr Jennifer Graves is a rare breed indeed: warm, caring, sympathetic, knowledgeable and thorough! Who knew such creatures existed?
Immediate upshot is that I will have a bronchoscopy under GA next week, at the Spire hospital in Tunbridge Wells. Plus an XRay and a raft of blood tests.
At this stage she strongly suspects an autoimmune process. Though it is conceivable I’ve got some weird underlying infection, even reactivated dormant TB (that my mother had when I was born). She is doing a load of allergy tests – that Wanker Webster should have done when he discovered my IgE was sky-high at something like 984, instead of the normal 300 or so. I am going to have to complain about that man at some point. Right now, though, I need my energy for me.
Dr Graves tried to persuade me to have the bronchoscopy sedated, with Midazolam, but was sympathetic to my phobia about tubes and didn’t bully me about having the GA.
She agreed with me about so many things. Such as it having been a jolly good idea of mine to try to have the bladder biopsy and the bronchoscopy done at the same time. Didn’t happen – Wanker Webster again. Combined with NHS. Which I’m now dubbing National Health Shambles or National Health Scandal. Am sure I’ll come up with a few more fitting monikers over time! Dr G also agreed that the insistence on differentiating all the various AI disorders like APS, Sjogren’s, Lupus and Vasculitis is unhelpful and unnecessary. They all overlap so much, why don’t we just have a lable like Autoimmune Disorder? They could possibly be subdivided into, say, connective tissue disorders, arthritic disorders, intestinal disorders, but no further than that.
I have stopped the Clexane because it didn’t seem to be making much difference for one thing, and because, try as I might with icing and slow injection etc., I was getting hideous blobby bruising – not attractive. Plus I came to strongly suspect that it’s the chest issues that are causing my symptoms, rather than clotting. But we’ll see once this has all been investigated.
Bad news is that, if this is all autoimmune, I’ll probably need heavier-duty immunosuppressants, such as cyclophosphamide – a chemotherapy drug that can cause hair loss (amongst other ‘delights’, but it’s the hair loss that would bother me most – in fact, it would be unacceptable).
Dr G quite spontaneously mentioned vasculitis, which had wafted across my mind at times recently. When I looked up the symptoms, I tick virtually every box! Would be good to have a definite diagnosis. But treatment options don’t look fun – see above.
I found it interesting that a respiratory physician should be so knowledgeable about AI conditions. Unlike Wanker Webster :-(. But thank goodness she is, and I happened to stumble across her!