Sunday, April 06, 2008

The Dress Rehearsal - Final Part

I spent almost a week in Gartnavel hospital getting my chest back into shape, and allowing me some time to get myself strong enough for discharge home. As soon as I was feeling better I was keen to get home and finish my IV antibiotics there - I think the fact I had already packed my case before the doctors ward round allowed them little choice in the matter. I was so pleased to get home and back to my own bed...and of course, to see wee Seb. I was treated to a few excited tail wags, as opposed to the usual cold shoulder treatment, so maybe even he knew I was in need of some TLC.

I began to feel much better now that I was back home, and my thinking became clearer. Despite the infection being under control I wasn't allowed to go back on the transplant list until yesterday due to a certain antibiotic I was on (apparently this is my 'reserve' drug for any post transplant chests infections, so I cannot be transplanted while on it). It was probably helpful that I had the week to get myself organised - even just the practical things like repacking my 'Newcastle case' and buying some extra items we realised might have been useful. It also gave me a chance to let the dust settle, so to speak, and get myself psychologically prepared for round two.

I find it easier to cope when I can see the silver lining so have spent some time thinking about what positives I can take from what I am now calling my 'pretend transplant':-

  • Although I have been waiting almost 2 years, I still never really believed that the call would ever come. A call did come - this means they were thinking of me and a match is possible. Often a second call will come soon after a false alarm, so for the first time the possibility of transplant seems real. For the time being, my fear of 'time running out' has been quelled.
  • I seriously doubt the transplant team will forget about me in a hurry - this can only be a good thing.
  • Even worse than what happened, would have been waking up with transplanted lungs that failed. I am forever grateful that the team realised in time and did what was best for me at that time.
  • I now know what to expect - right up to the point of waking up in ITU. This means I'm about as prepared as anyone could be now.
  • Even if I were to get another false alarm, the disappointment could never be as bad.
  • The surgeon doesn't even have to know where to cut - he has a wee line to follow. I have toyed with the idea of tattooing on a small pair of scissors to indicate 'cut along this line' but I'm sure he will work it out.
  • I now absolutely realise the importance of being at an optimal weight and physically as fit as possible, in order to recover well post op. I don't think I had ever given this enough credence before.
  • I realised I had not packed enough clothes for a lengthy stay. My family realised they had not packed anything in advance and were all forced to visit the local Matalan to buy pants and socks. We will all be better prepared next time.
  • Andrew's work now understand that he was serious about having to leave at short notice. They wont ask him to go on any work trips down south again.
  • I have managed to convince Andrew that I required both an ipod and expensive headphones (I can't wear those in ear thingies) because it would be useful to have some relaxing music to help me sleep. Although its my birthday next week, these items had to be purchased this week ....just in case.
I am sure there are many more positives to take from what was otherwise an awful situation and I have to hang onto these, and just move forward now. I'm all packed and organised for the next call, but what I really need to do now is try and forget all about it and just get on with my life. Onwards and upwards, as they say....


p.s I have no idea why this keeps changing font and text size...I wasn't trying to be arty or anything ;-)

8 comments:

Anonymous said...

It's great that so many positives have come out of this experience for you. That's the dress rehearsal done, I hope you will be 'alright on the night', and that it's not too far away.

You're clearly a glass half full girl and that's half the battle. Thinking of you.

Audrey xx

Anonymous said...

You are "truly inspirational" gifted and brave, we are all so proud of you. Sending you lots of love and hugs.

Roskev

suzie said...

Wow Jac I've just read through the last three posts and I'm amazed by how very positive you are. I'm praying that the real call comes for you very soon hun.

xxx

Anonymous said...

Hey
Just to say that I think you are a wee star and I love the idea of a wee tattoo of scissors! :) Was good to see you at the weekend and looking forward to celebrating your birthday this weekend...only 4 sleeps! :)
Chat soon xxx

Anonymous said...

You were right, it was easier to read. Fingers crossed for the next call.

Take care

Anders x

Tinypoppet said...

please please please get that tatoo.... ;)

You know I think you're a wee (woo scottish!) star. Higs xx

Anonymous said...

I think you were trying to be arty. but well done on all the rest :) Looking forward to seeing your scar a la weekend. woohoo
Fi
x

CB said...

I think it speaks volumes of your strength of character to be able to have recounted all that, especially so soon after the horrific experience. Thinking of you and hope that when the call comes (and soon) we'll be hearing about your new lungs just as quickly :)

C-x-x-x-x-

PS. I'm starting to worry that yours and your Mum's b'day presents are going to be a tad late, so potential apologies on that. I'm blaming Play.com for this, despite the fact I only ordered the gifts late last week and it's nothing to do with my tardiness in that respect, oh nooooo noooooo no ;) xxx