Friday, December 03, 2010

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.


Molly said...

Glad to hear you're home and mended :D

Moll x x

rachel walters said...

I confess I'd got out of the habit of reading your journal with the move to Turkey and all related hooha. But just caught up now - sorry to hear you needed mending but yay for being mended (fingers, toes and other appendages crossed) now! Hope all continues to go well. Despite the chaos it's causing, I'm still kind of jealous of all the snow there, but rumour has it that it will be coming our way soon...

much love and many hugs,
rachel xxx

Vicky said...

It was good to finally meet you a few weeks ago even though it was a very brief

Glad to here you're on the mend

Vicky (vics)

Anonymous said...

I read your blog every now and then, and was so sorry when I checked in today to read what a worrying time you've had. I'm glad that it seems to be settling down, and I hope that you are well on the way to recovery now, just in time for Christmas!

Gill Hollis X

Shona said...

Just found your blog. I'm glad to hear you are mended and you are right the snow does look beautiful.

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