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Wheezy Penguin update time! ...

Posted Dec 03 2010 1:10pm
Wheezy Penguin update time!

Look at me being so restrained that I didn't immediately post I'M HOME AND MENDED this time after discharge. Instead, I've been very cautious and waited a full week to watch for any yo-yo type behaviour, but since I was discharged a week ago today I think I can now safely say I'M HOME AND MENDED.

Well, pretty much mended. Basically, we are definitely on the right road now. Watching my lung function creep up steadily day by day has been a huge relief and joy. Not quite back to normal yet, but practically there. I've even been into work (don't tell me off, I only made it in 2 days before the snow scuppered that plan anyway....) and in fact Harefield are so happy that my follow up appointment I was due to have on Monday has been cancelled. WOOHOO!

It seems like the answer was a big fat whack of methylpred followed by a now 6 week long course of high dose oral pred. Whilst I am now thinking about food practically 24 hours a day (thanks steroids) they have done wonders, and I feel so much better. I had almost lost an entire litre of capacity so the difference is quite marked. I will confess I was rather scared at some points, particuarly when the phrase "we don't know what's wrong" was uttered (more than once) as I'd always rather know what I'm dealing with.

Was it rejection? We still can't know for sure, because even though the steroids have worked, steroids can work for a number of things, so it may not have been that at all. I think Dr C is still putting it down to the reflux issue; since coming home I've raised the head of my bed quite significantly and that may be helping too (I'm not really sure) but at least I know the fundo op will sort that out in January. Plus, I won't be able to eat properly for about 6 weeks afterwards so at least I'll lose the 20 stone these steroids are going to make me put on...

Huge thanks for all the lovely messsages people have sent me; I was really touched as even though it was a little blip, I was a nervous bunny for a while and the support was very much appreciated.

I shall leave you with a picture of our back garden as it is at the moment; yes this snow is hugely disruptive but it is also undeniably beautiful.

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