Friday, March 30, 2007

Firstly and most importantly please can I apologise to anyone who has received weird texts from my phone this week - the person who has found it obviously thinks it is funny to use up my credit sending vulgar messages. It isn't me and I am hoping to get the phone back this weekend. Really really sorry! Now on with the story...


The operation was slightly more complex than expected. The huge amounts of sticking cutting, stapling and gluing over the last few years resulted in my lungs being fairly welded in, and a predicted 5 hour operation stretching to 9 hours in total. My family slept (or attempted to) huddled on chairs in the waiting room of intensive care until at 5am the news came that I was out of theatre. The surgeon appeared to give them a brief account of how it went. He explained about the time delay and was careful to emphasise that this meant the new lungs were out of the body for too long; the optimum time is 2-4 hours and my new lungs were without a blood supply for 5 hours 20 minutes.

This time delay caused a film of water to develop around my lungs, and over the next few days, repeated blood gas tests showed the lungs weren’t working properly yet and I couldn’t be brought round. As some of you may know, I am notoriously difficult to sedate and true to form even with doses they would usually only consider for large adult men, I kept coming round and pleading with them to take the ventilator out. During my time sedated I smiled, squeezed my mums hand, reached out to my grandma and various other displays of naughty behaviour one does not expect from someone who is fully sedated.

My first memory is a very hazy one of coming to on the ventilator. This was actually the Tuesday after the operation (which took place overnight on Thursday) although I wasn’t aware I had been out for so long. I won’t lie, it wasn’t comfortable, and I was desperate for them to take it out. When attempting to signal this I was told we had to wait an hour to ensure I had regained consciousness fully and would be able to breathe adequately on my own. That hour felt like an eternity as I watched the minutes creep round on the clock until finally the team came in…and the tube came out. I gasped in my first breath of air on my own and almost immediately started panicking. They told me I was doing really well I just needed to slow my breathing down and try and take deep breaths but it felt wrong and my breath came in frequent ragged gasps. I no now that this was probably due to the water logging of the lungs. I was petrified and kept trying to focus on people I knew who had had their transplant and the fact they had overcome this to calm me down and give me strength.

My mum and A were brought in, and hadn’t been told that I had been extubated resulting in my mum shrieking as she saw me sitting up in bed being handed a cup of water to sip for the first time. For some reason in my confused state I was extremely anxious about my family coming in, and was reluctant at first to see them. I think because I didn’t expect to struggle I felt almost ashamed that I wasn’t sitting up waving merrily and able to talk straight away, and didn’t want to let them down.

As the day went on, I struggled more and more. The nurse offered me a cup of tea which I accepted and that first sip of hot sweet tea was like nectar. I tried to slow my breathing down but it remained uneven, and my mum says by the time they came in to visit on Wednesday morning I was looking dreadful, sweaty, grey and struggling. I had also been put on the breas - a mask strapped to the head which pushes the air in and works as a non invasive ventilator – after a bad night. As my parents left the room the doctor followed them out and explained he had decided that I needed to be re-ventilated, it had been worth a try but I was struggling too much and the ventilator would help dry the lungs out. So back went the tube down my throat and I was sedated once more.

17 comments:

klics04 said...

Emily this is a great insight to what is going on before and after a transplant. How fantastic you have done. Please think about puting it into a book, it could help so many people waiting for a transplant and relatives. You have such a great way of writing. big hugs to you. kevnles

Clodagh said...

Your truely amazing Emily, you've come so far, go you! x

Kat said...

It sounds like such a tough time for you, it must have been very disappointing to struggle more than you expected when first coming off the ventilator. But on the bright side, you're doing so well now and remaining such an inspiration to everyone! :)
I received my Hydro Active entry form through the post this morning, yey! Roll on September! xxx

Anonymous said...

wow emily, i hadn't realised quite how tough it was for you, and how touch and go it was. looking forward to hearing the rest of the story - especially as you've improved so much since then too! I second the idea about the book.

looking forward to the next instalment - and also for news on your future plans!

Go girl!!!!!!

anemac101 said...

Thanks for the next instalment it must have been a worrying time for you all glad your feeling like teling the story now ,more power to you!
love Annex

swissfriend said...

ndpoor darling, not a nice experience but all the more credit to you for not letting it defeat you. May you never ever have to go through this type of experience again and may all your life experiences be happy, pleasant ones from now on. Enjoy your new freedom this weekend. You have certainly earned it.xxx
Janet

swissfriend said...

poor darling, not a nice experience but all the more credit to you for not letting it defeat you. May you never ever have to go through this type of experience again and may all your life experiences be happy, pleasant ones from now on. Enjoy your new freedom this weekend. You have certainly earned it.xxx
Janet

misdee said...

Please do carry on writing the story, so many times i have heard 'oh once he gets his transplant he'll be fine' some people have this idea that transplants are easy, bish bash bosh and off you go home. i will be directed more people to your blog soon.

will wait patiently for the next installment.

sarah

worfolk said...

OMG, Emily. You are such an inspiration as I wait for TX. I can't wait every day to check and see if you've posted another chapter. Please keep it up, and take care of yourself too! You're such a nutbar - I love the way you write!

Anonymous said...

I can deffinately feel theres a book in this endorsed by Richard and Judy of course. You'll have most of it on your blogs too!!!!!

You'd be a best seller without doubt.

Anonymous said...

Emily, interesting story. Best part is you being able to tell it, lol. I never really wrote/told about my 60 day in the hospital after my brain surgery, I finally put some of it in my blog if you'd like to read it.

Keep getting better, Love, Randall

karen said...

hi emily,
really enjoying reading your posts. i agree with klics04 you should really consider putting all that you write into a book.

you have had it tough, but hey life is tough but you are tougher!!!

sending loads of love and support
karen. x

Simba said...

Hey Emily,
You should definitely sell your story to a newspaper. I'm sure you could have your pick - it would make a great feature and you'd get some cash and raise awareness all at the same time. Woohoo!

Go on, go on. Don't you just *love* having your name/words in print? (Or is that just me?) xx

debbie said...

Oh Emily, just reading your update, its seems so scary reading it, so god nows what it was like being you, and your family right in the middle of it all, anyways how are you going honey.. how are those News lungs feeling

Anonymous said...

Good insight Emily to it still being an uphill struggle post transplant.Although, considering everything you been through and also how weak you prob where before etc prob all contributed to difficuilties as you described etc.
Sure lotta mix emotions and lamost having to 'learn' to re-breath differenly etc etc sure strange sensations etc.....

still such an inspiration to us all and as always thoughts and hugz 2 u and your family and friends ....

Elaine Rach and family xxx

ps would luv you to write a book... have always said I would like to about Rachs rollercoaster of life starting at 16wks conception she causted a stirr to say the least!!

Freddie said...

The strength you portray in your ordeal has to have come from your mum and dad Em. I must admit, I dont know dad that well, but the immense energy and strength that your dear mum posesses has instilled itself in you and the world is a much better place for that. People prayed for you in Ireland and Cornwall though my hypocrasy questioned my own contribution. What a worry for those closest to you, though the little bit I do know about you, I'd say that you were more concerned for them and their worries. Take good care little one. The shell has been prised open and the pearl lies within....

Anonymous said...

I've just seen the Thackray "sisters" on GMTV - Emily It was lovely to see you in the flesh and Ann - you looked fantastic - you win today's award for proudest Mum