Tuesday, March 06, 2007

This is probably the last one from me, as hopefully Em will have access to this soon.

I had the wonderful, uncanny experience today of walking into my sister's hospital room and seeing her completely without tubes, drips, chest drains, nasal specs or trachea mask for the first time in two years. The team have been cutting down on the support for a while now, but the last thing to go today was the tracheaostomy tube, and the decision was made to take away the oxygen too. Em was completely independent, and while this is obviously a huge step and obviously causes a few jitters at first, she looked thrilled and disbelieving at the same time!

The miraculous nature of what medical advances have done for Emily has only been hitting me (perhaps I'm a little dense) over the last couple of weeks. As she pushes past the boundaries that CF had set for her before this operation, the reality of what she can really do now is only just becoming clear. I am so excited to discover what Em can achieve now she isn't breathless, tired, and confronting her own mortality. If she was positive and assertive in that situation, watch this space for a human whirlwind when she's fully functioning!

I'm so indebted to the wonderful Harefield team for everything, and so proud of Emily's physical and mental capability throughout all this. She inspires me to be a better person, and to never take my existence for granted. Being able to leap on to her hospital bed for a cuddle, with no delicacy in regard to drains, monitors or cylinders, was better than any feeling I've had in a long time. Keep promoting organ donation... it IS a miracle, and the biggest miracle of all is that it is US that creates it.

A proper update from the lady herself very soon! Thanks to everyone who supported Laughter for life, it was a huge success, and Emma and Oli are such stars for making it just what Emily pictured. Great job guys.

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29 comments:

Anonymous said...

Wow, thats fantasic.. Yet another hurdle Emily floats over with her wonderful new lungs.. So pleased to hear she is now doing so well.. I hope she is running round those ward really soon...
Seriously well Done Emily you have come so far, even though this is just the start of your new life with those fantastic lungs inside you, you have achieved so much already... Keep Going!!!!

XX Sandy xx

Jayne said...

I'm so glad things are going well for you Emily. What excellent news!
Looking forward to reading your posts again.
Take care

Love

Jayne xxx

Julia said...

Thanks for update Lucy it is amazing to think about the fantastic change that has taken place in Emily and more changes on the way, no doubt. What a brilliant team Harefield must have and maybe if the donor family could know how much their donation has helped someone else it may give them a little peace.
We all really enjoyed comedy evening - thanks to all involved. How much was made?
Looking forward to maybe visiting you soon Em.
Much Love
Julia
xxx

suzie said...

News doesn't come much better than this on a Wednesday morning, I'm chuffed to hear all the bits and pieces have disappeared, onwards and upwards now Em, at a reasonable pace mind you.

I couldnt agree more it is a "miracle" and things will just keep getting better and better.

Loadsa love from all in Chester.xxx

Anonymous said...

wayyyyyyheyyyy fantastic news is this!!!!glad emily is doing so well

Frizzymum said...

Wonderful news! I had such a lovely night at Laughter for Life and loved meeting your wonderful folks and fella. I hope we were true to your original 'harebrained idea'?!

The only thing that would have made it any better would have been if you could have made it too...

Looking forward to seeing you soon! :) YAYYYY!

rach said...

such such nice news to read, GO EM!! you're a star. words don't really do this justice, so i'll just say.... amazing. :D


on a related note, guess who's coming to durham tomorrow? bill bryson! AND even better, he's coming to promote organ donation after having spoken to a young man with cf named oli... :) not that i know oli, but having heard/read his name enough times i may have squee-ed a little on finding this out! seeing through you just how significant signing up for organ donation is, i may have to restrain myself from running up and hugging him as a way of thanks for supporting this campaign.

loads and loads of love,
rachel xxxx

Kat said...

What a lovely post to read :) Thank you so much for all the updates, they are all greatly appreciated!
I can't imagine what a fantastic feeling it must be to see someone you care about free of tubes and the like after so long! Em has come so far and done so well, but so have all her family and friends - it must be tough to see someone go through so much. I'm so glad things are looking good! :D
I'm also looking forward to reading a post from the pink and smiley one herself soon! Yey!
Loads of love to you all Kat xxx
PS Laughter for Life was great, I haven't laughed so much in a long time! x

swissfriend said...

Isn't this the most wonderful news - I can't think of anything that could make my day more than learning that Emily is finally detached from all that paraphernalia. Any day now you will be able to soak in a bubble bath Emily: I know only too well what a pleasure that is after a long lung-related illness.

Once again, heartfelt thanks to the generous, unselfish family who made this possible and to the fabulous medical team who got Emily up and running again.

It's fun and laughter all the way from now on Emily; go for it, girl - live life to the full.

Thanks to Lucy for the brilliant update; you are a family of writers I see!

all love,
Janet

Fi said...

What more can I say. Well done Em, and family, and doctors, I couldn't be happier for her.

Look forward to seeing you back on here yourself wee one :)

Great photos!
Fi
xxxx

justine laymond said...

Well hello there Chick..only me again..another fan, friend, follower of your amazing road to recovery. Life will simply be so amazing for you now...u just wait. I am amazed at the simple things I can do now - that I couldn't do prior to my transplant. You appreciate everything sooo much more, and my smile is never ending!!
I loved the laughter for life night as you know, and hope you get to giggle as much as the crowd did when you see the footage.
You are a star and everybody loves you!!
Stay groovy. Lots of love, Justine Laymond xxx

Saz said...

Thankyou Lucy, for updating us and making us both cry with happiness :o) We are so unbelievably joyful for Emily and all of you.
Can't wait to read about Em's progress in her own hand.
Lots of love
Sarah and David
xx

Katie H said...

What great news to read - so happy for you Emily, and for all your family, A and your friends too. Thank you Lucy for keeping us up to date. Take care,

Katie

Anonymous said...

Emily, I'm so happy for you and your family. Good news. Keep us posted.

Randall

nikkinoodles said...

I bawled my eyes out reading that fantastic news from Lucy. Emily looks so well in that picture, I'm so pleased! Well done Em!

Anonymous said...

It warms my heart, truly, to know that there are such wonderful people out there in the world. All of you - Emily and your family and friends, the doctors at Harefield, the donor, the donor's family, all of you in this community - deserve credit for rising far above and beyond the pettiness of our global consumer and celebrity-crazed culture. It is in the moments when I am reading posts like this most recent one of Lucy's that I find hope for the future of our planet and our species. We have such tremendous capacity for greatness that is so often wasted. I don't see any wastefulness going on here...take care everyone, do well.

Becky said...

Oh Emily! What wonderful wonderful news for you!!!! I am literally crying tears of happiness here for you!

I am so so so glad that you are finally able to get rid of all that equipment and let your new lungs do their thing!

You have done so fantastically well, and now everything is ahead of you.

I can't wait to hear what you get up to next, and I am very much looking forward to hearing your own views on the past couple of months!

Tons of love and hugs,

Becky, Seren & Dylan xxxxx

Flipper said...

I have been inspired and touched by Emily's approach to her illness, transplant, recovery and LIFE. I bumped into her JustGiving page by accident, shortly after finding that a teenager on my estate has CF, and have checked up on her progress every few weeks since.
Emily, you are an amazing and inspirational and very funny woman, with a great bunch of family & friends. You don't need strangers telling you all this of course, you've heard it all before, but your story has made me proud of an extraordinary, ordinary person.
All the best for a great new future!
x

annemac101 said...

Thanks for the update which I can hardly see for the happy tears which are blinding me .I check this blogg and the cf trust mess board every day looking for news .I have prayed every night for you Emily that you would have your transplant and recover to fufill all the things you want to do .I am soooooooo happy for you and your family and send you hugs ,if you can remember I said that when you have your transplant you should get your blogg published and I mean this still you are a wonderful inspiration to all people and as your blogg has always made me laugh and cry at the same time what a wonderful read it would make in book for and a way of maybe doing some og your famous fundraising ! So look out world here comes Emily !!! lots of love Anne xx

Bev & Lucy said...

Absolutely fantastic news, we are so pleased to be reading this.

Lucy loves the photo of you girls too!

She sends all of her love, as do we.

Bev xx

Jac said...

Woo *insert hammie dance*! Such fantastic news - it must be a liberating feeling being tube free at last. For a split second I thought you were wearing dangly earrings with your pyjamas in that photo, but it was just the way your hair is lying. Worrying thing is, that I didn't think it was strange. Is that a sign that I am weird, or I think you are? I'm not sure.

Can't wait to see you posting Em..

love and higs a plenty
Jac xx

Livvy said...

You always have been and always will be a true inspiration to many - me included. Your spirit and determination has always astounded me. I look forward to seeing you again in September zooming round Hyde Park with your mum and sisters trying to keep up with you! Much love, as always, xx

AndyH said...

YAY! Wonderful news & a lovely pic of the 3 of you together!

Keep up the fantastic work Em & you'll be out of there & home before you know it!

Love & hugs
Andy xxxxx

Anonymous said...

Have followed your progress for many months and so so pleased that things are working out for you at last. As a parent of a CF sufferer I admire your fight, strenght and the determination that has seen you through. Emily enjoy your new lungs and enjoy life.

Anonymous said...

Awww thanx for updating us.Really do appreciate all the updates from yourself and your family. :D
I bet it was soo emotional to see Emily your sister looking well without drips tubes, oxygen etc. We also found when Rach had her kideny transplant and no haemo lines etc etc so good to see them looking'normal' and their ole self back after soo long.Emily you really are an inspiration to us all and to give hope to others' that are in similar situations waiting for transplants. Such a gift of life....... and know you will be eternally greatful and such wonderful work yourself and Emma do to promote organ donation too.
Look forward to Emily posting herself soon no need for all her own Personal Assistants! lol :D for some admin anyhow .!

lovely pics of you all sure your parents so proud of you 3 lovely sparkley smiling girls :D

hugz Elaine, Rach & family xxxxxx

Pauline said...

What truly wonderful news!! I have been desperately waiting for an update for ages it seems, but it was surely worth the wait! Good for you Emily, great to finally see a picture of you, you and your lovely sisters look great.

Onwards and upward from here I think.

I will remember all of you in my prayers. And will also say a prayer for your donors family.

I am two years down the line from my transplant and my life is wonderful, I am so lucky to have been given this second chance at life.

All the very best, and hopefully you'll be updating your own blog soon.

Lots of love

Pauline :)

Anonymous said...

"Fantastic" just doesn't come close...I've literally streams of tears and am so very happy for you Emily and all those that know and love you. It must be amazing.

I have to also agree with annemac101 that your blogg should be published...it's been so very important I'm sure to so many affected in some way by CF....

Take care, and looking forward to further updates.

Carolynx

worfolk said...

Hello, Em -
I'm so very happy that you are well on the road of recovery. I first read about you (and Gaz) on your website a couple of years ago. I am in Canada, a 50yo male w/CF, and on the transplant list here. When I found out that you had finally received your call, I was on pins and needles waiting for updates. You didn't know it, but I was praying right alongside your other friends and family for a positive outcome. Reading about your experiences has been very enriching - you have a great attitude. You also have great taste (I love 4 Weddings and a Funeral too), although I draw my personal line at pink robes :) All the best in your bright future!

Larry

Lindy Williamson said...

Wow - you are all an inspiration - i look forward to the next blog x
Lindy Williamson