That was the end of my hospitalised blogging as things moved quite quickly after that. Good old Dr C (my fab consultant who tells it like it is, doesn’t take any nonsense and is extremely key in me still being here today) came round to have a chat. He explained why they’d pulled me in so fast; a drop the size of mine in 24 hours needs checking straight away. He told me not to be fooled by the “just a cold” scenario (which is a shame as that’d been my mantra since admission) as whilst hopefully colds would be “just colds” they could actually cause three far more serious problems:
1.Pneumocystis – which is where the infection actually gets into the lung tissue rather than into the airways (no thank you)
2.Acute rejection – I’ve not talked much about rejection so I should really explain a bit more here. There are two types. Acute, is a sudden onset rejection often characterised by a sudden drop in lung function, temperatures, a drop in oxygen saturations or all of the above. It is very common (most people have at least one episode in their first year) and is reversible but it’s vital that it’s caught quickly so they can change appropriate meds and treat it swiftly and effectively.
3.Chronic rejection – this is the other type and is a slower acting more long term form of rejection. It causes a progressive decline in lung function and reminds me a little of CF really. It is non-reversable although treatments can slow and sometimes halt progression.
They were looking for either one or two in me however a cold that settles on the chest and left unchecked could eventually be responsible for triggering three. A slightly scary talk yes but important as of course I feel so normal. And I am normal, it’s just I am normal as we (the hospital my family my friends and I) are meticulous about ensuring nothing occurs to jeopardise that. I must admit I’d never really considered a cold could cause me much harm post transplant so I am very glad that I am now much more aware of what to look out for.
It hasn’t really scared me though as I’ve had about 3 colds since transplant and this is the first one to go onto my chest, and even this one (by the looks of it) isn’t going any further.
Anyway so after all that, it was decided that I didn’t need a bronch, my lung func that morning had gone up slightly and a very audible wheeze could be heard but with no evidence on a CT suggested mild cold related inflammation. I was given an inhaler (ah my purple inhaler – I’ve sort of missed you for the last 21 months) just to help me over the next few weeks till this cold has shifted. Under strict instructions to ring if anything changes, I was told I could go home.
Just as I was packing up my stuff and chatting to a friend who’d come to visit her husband, the nurse appeared nervously round the corner, holding the curtain in front of her saying this was her protection. “Your Cyclosporin results have just come back...they are unrecordable. I’ve been instructed to chain you to the bed. You can’t go home.”
To be continued...
2 weeks ago