Tuesday, September 05, 2006

Now if I should have learned anything by now, it is that my lungs are extremely strong willed and stubborn and need to feel that they are the centre of attention and in control at all times. So like me only magnified. Having not learned that, I today, over-enthusiastically started packing up my room, took down all my cards (over 80, thank you so much you lovely lovely people) and began making preparations to come home having been told by the team yesterday that this was the likely happening. I was sitting on the bed at about 4pm, surrounded by bin bags of stuff, when the doctor came in. His promising start was “it’s not too bad news” which immediately made my heart sink. Apparently this morning’s X-ray showed that that [insert appropriate expletive here] airleak has grown in size again. His words rained down on me like a shower of rocks, and whilst I tried to listen nicely to his reassuring words, which explained that this might not hold me up going home but will need careful monitoring and it isn’t looking awful, I had to bite my lip quite hard so as not to scream, throw myself on the floor, and then cry.

Instead of doing any of the above I asked for my physio to be bleeped (the poor physios here should be paid for their psychologist role as well as physio they really should) and cried at her a little bit, then talked it through calmly. Minutes later, my consultant came in surrounded by bags, boxes and piles of stuff, confirmed yes it is down a bit, and that as I suspected, yes this will in fact delay my going home. Her reasoning is completely valid and I agree with it; we have only had one X-ray showing it has gone down. What is more important to know is whether it is still going down (i.e air is continuously leaking again) or whether it collapsed a bit again and has now stablised, or (let’s think positive people) it collapsed down a bit and is already on its way back up. But essentially only further X-rays can tell us which of those options my lung has decided to take, so no talk of home for the next 48 hours.

48 hours isn’t dire, in fact in the grand scheme of things it is nothing. What was more frustrating and crushing is simply the fact it has gone all deflatey again. I knew this would probably keep happening, after all the whole point is that they couldn’t operate to remove the damaged part, which is why I am marked as urgent for transplant, but it is still disheartening. I don’t feel too bad, I am a little more breathless at rest today and I did have a very puffy morning but I sometimes have those anyway so didn’t attribute it to any sort of new misbehaviour on my lungs part. On the bright side however, little lung was kind enough to hold off this latest trick till after the hydro active, and so I have a million photos and video footage and beautiful memories and a real live (well not live) medal and most excitingly (people may find me weird for this) aching leg muscles. I never get aching leg muscles, as my lungs always give out before my legs have had enough, and the day after the race I woke up with the stiffest shins and every time it tweaked I felt like dancing for joy. A physio came in to do some stretches and a massage and everything, it was really quite exciting and fun to not be concentrating on chest muscles for once!

So am down but by no means beaten. This is merely a delay in proceedings, and there’s nothing I can do about it tonight anyway. Think I will watch my slideshow again (it is viewable by clicking here) ; I have set it to Heather Small’s “Proud” because that is how I feel and also that is how each and every person who took part on Sunday should feel.

11 comments:

Sian said...

Oh Em! Not to worry, you WILL leave the Brompton soon and you WILL leave harefield with new lungs soon too! Keep positive and loads of love and hugs. xxx

Emmie said...

Oh poppet :( I'm so sorry things have got deflatey again. Keeping everything crossed its just a minor delay to your homecoming. Hang on in there and just keep remembering how amazing you were on Sunday!
Loads of love
xxxxxxxxxxxxxxxxx

Nicola said...

I can't even write the first word I said out loud as soon as I read this,it is a rude one.Hon,I'm so dissapointed that those lungs are being all deflatey again,I really hope it's on it's way back up.Fingers crossed for a journey home in 48 hours.

If you check my Blog I have written about something that happened on sunday-I think it will make you smile :)

Pauline said...

Emily, so sorry you're not escaping hospital! I know the feeling well! Isn't it amazing the amount of stuff you gather when in hospital? I used to need a couple of supermarket trolleys to get mine out of my room.

Please keep your chin up (I know you will). Keep us all up to date too.

Pauline ;)

Kat said...

Oh, I'm sorry to hear you wont leave the hopsital just yet, but I'm sure it will be soon, so just keep smiling :) The slideshow is great, by the way! Loads of love xxx

Pauline and all at Donor Family Network said...

You are an inspiration to us all. We are all rooting for you and we know you will come through. Keep smiling !
xxx

tasha said...

Sorry to hear that hun, hope u get home soon. Ur such an inspiration. Hang in there and like Emmie said remember how well u done on sunday, u were definetley the star of the day. Lots of love x x

MoO said...

I am sorry to hear your news, heres hoping its just a slight blip and you will soon be sleeping in your own bed. I love the slide show, and I am very proud that I was part of your team. It was fantastic to meet you, one of the greatest highlights of my life.

Much lovee doviness xxx

MoO xxxx

livvy said...

Awwwww Em. I know you were so excited about going home. I'm so sorry it's not as soon as you would have liked, but it will be SOON. That bed of your's at home is calling you and you will be in it soon - no doubt about that after your smashing thoughtful walk on Sunday. Love you loads and loads and loads, XX

Sandylizz said...

Oh Emily...
Those silly lungs of yours.. Lets hope they are inflating as I write this.. Im sure you will be home very soon.. Try to stay positive..

xx Sandyxx

Simba said...

As 48 hours is probably up since you wrote this - I seemed to have turned into a snail as everything I do at the moment has an extreme time delay - I hope you are going home v soon indeed. :)

Just watched your slideslow which is just so very, very fantabulous indeed. Hurrah Yeeha! x