Had a really good 'consult' with Charlotte Rayner yesterday, who is the chest expert at Parkside. As the heart chap at St George's has basically given up, she is now charged with trying to work out why I:
- have so little overall energy
- can;t all for more than a few yards without getting very breathless
- have chest pain
- and generally move like an 87 year old, not a 47 year old
Her initial view is that it may actually be going back to being a lung issue rather than a heart one (good job I had those 8-10 heart tests then…).
One thing she mentioned that no-one else has as yet (and that's a bloody short list!) is pulmonary hypertension. But she also wants to cover off all the lung bases again so I am now in line for:
- a chest x-ray (done on the day)
- a High resonance chest CT (done today)
- a VQ something or other (being done this Fri)
- another lung function test at the Brompton Hospital (needs booking)
- some other test I can't remember as on you get to 4 things my brain runs out of juice (needs remembering and booking)
- and possibly some totally joyous sounding thing where they ram a needle through the side of you neck and send it merrily off towards your lungs for a mini day out – mmm, no rush getting that one booked in methinks..
But – was really good that she thinks there is stuff that can be done – and just maybe, my wishful hope of 'finding the drug on the pharmacy shelf' might actually come to fruition at some point once this lot is done over the next week or so. Its ironic – it is SO fast getting stuff to happen in the Private sector, and so 'organised' but still frustrating as I have to jump through endless hoops and changing pathways in the hunt for 'the answer'. In the meantime, I am puffing and panicked still when I get as far as sitting on my bed. That really sucks.
Will keep you in the loop – at least today's scan was so fast I didn't get stuck on the scanner bed. That, in this world, makes it a really good day! S x