Absolutely knackeroonied today after yesterday up at the Brompton. Had to wait over 2 hours and fight the system somewhat to ensure I could see Dr Menzies-Gow and no one else. But he was good once I got in there.
Upshot is he’s not convinced by the tentative ABPA diagnosis. His comment was along the lines that ‘I see they’ve all been running around in circles tying themselves up in knots and deciding this is ABPA’. He says my CT scans don’t fit and that there has been no sign of aspergillus spores. I’m not sure that’s entirely correct but, in any case, he wants me to be admitted for a couple of days to run a whole battery of repeat and new tests. Including skin allergy tests and a full-scale pulmonary function test on a treadmill, heart investigations, etc. I think he’s suspecting there may be more of an APS connection than has been picked up so far. And that tallies with the feeling I’ve had for some time that I would benefit from more anticoagulation. Indeed, the 2-week Clexane trial did seem to improve symptoms, particularly brain function and things like balance – but I couldn’t tolerate the awful bruising or the hassle of daily 10-min injections. I told M-G I’m hoping I can hold out till Xarelto/Pradaxa are available. And maybe something naturopathic like nattokinase could tide me over in the meantime.
Good news is, because he’s far from convinced that I have ABPA, I can come off the steroids. Yeay! Perhaps I never really needed to be on the buggers in the first place – grrrr. Though I did feel spectacular for the first couple of weeks on mega-doses. So I think maybe a short sharp shock of them initially was probably helpful.
He’s not sure either if I need another bronchoscopy. But that’s in abeyance till we know a bit more about other stuff.
Bad news is it’ll be about 8 weeks before the tests and another 8 weeks after that till follow-up. So, oh goodee, that means I have to carry on feeling crap for another 2-4 months. And that’s assuming we get any answers in that time.
Also, coming off the steroids is going to be as awful as being on them. Supposed to be coming down at 1mg/month – but I bet I don’t go that slow! I’ll see how I feel.
Of course, I’ve come away thinking I probably should have asked more questions, checked a few things out – like am I dehydrated at present, as I suspect, and if so, why? But I think we both agreed there wasn’t much point asking many more questions till we have some test results.
Gave several pints of blood, as usual. Wonder I’ve got any left!
At least I feel, as with Jennifer Graves, that I’m in good hands with someone who cares, is approachable, treats you like an adult, and is taking me seriously. And also that he might be the first to really try to join up all the various dots.
To be continued….