Wednesday, August 16, 2006

It was a normal afternoon, everything was as it should be - mum had arrived armed with magazines and stolen some of my chocolate and in her attempt to eat it hastily so as not to be detected choked on it and spent the next 10 minutes telling me how sore it was much to both of our amusement – and Adam had just arrived, it was about 5.30, so the three of us were sitting idly chit chatting. The phone by my bed rang, it does so sporadically and is rarely actually for me, as people can contact me on my mobile so I don’t tend to give out the number. Normally I would let it ring due to the above reasons, but as my mum was there she picked it up and passed it to me. The nurse told me there was a call and then put it through. “Hi Emily, it’s one of the coordinators at Harefield. Guess why I’m ringing”. I said “no are you serious” and she replied that yes, there were potentially some lungs for me. I just broke down in tears. Mum and Adam were looking at me in fear and I managed to tell them it’s Harefield and through my tears say to the coordinator “I’m so happy” over and over again as I suddenly panicked that she may interpret my tears as those of fear or other negative response.

I passed the phone to my mum as I couldn’t speak and proceeded to weep “I’m so happy” in a slightly melodramatic recipient at the Oscars manner over and over at Adam and the subsequent steady stream of nurses and doctors who appeared excitedly at the window. A blue light ambulance was called and we packed a bag and off we went. I was by this point quite calm – a lot of the staff were in tears.

My mum says I grinned all the way there in the ambulance, and whilst the coordinators words that we had no idea of the quality of the lungs yet so this was all very provisional were firmly in my head, I dared to let myself think of some of the things which I never do, things about the future, which if I concentrated on them regularly I would probably become all despondent as it is much healthier to concentrate on the now. We arrived smoothly, and the rest of the family congregated with remarkable speed. Bloods, washing and prepping and obs were done and the gown was donned. I signed the consent form which lists the possible risks (it always amuses me they list “chipping of teeth” due to ventilator next to “death” as if they are vaguely in the same category) and then it was a question of sitting and waiting. My lovely coordinator was wearing very distinctive high heels so we could hear her approaching every time she came in the room, and we would all fall silent as the footsteps got louder. At 10pm she came in and walked over to the bed, and I knew straight away it wasn’t good. What I hadn’t prepared myself for is that it wasn’t the organs, it was me. My temperature was up and my blood results were fairly high, the combination of both indicated infection and the decision was it would be too risky to undergo the operation.

Disappointment is not the word, and in possibly the least brave fashion ever I wept like a baby. I begged her to take my temperature again and it had come down slightly. She reported such to the surgeons but as time went on it became clear that they still felt this was too risky. I cannot fault any of the team, they had everyone and anyone on the phone studying all my results, they were all desperate for this to happen for me. At about 11.30 we got the news that there was a problem with one of the lungs and so the person who had been brought in as back up for single lung would be the recipient. This news actually lifted my spirits, as it was obviously never going to be my time. By this time I had composed myself enough to remember my manners and thanked the team for doing everything they could and for calling me in. The problem with the lungs meant the backup for double also went home disappointed, and as weird fate would have it it is someone I know, and I have spoken to her since and both of us are heading forwards with our heads held high, stay strong and smiley chickie.

They were intending on me staying there and returning to the Brompton today but I couldn’t bear the thought of waking up at Harefield with my tired old lungs still so bless them they got an ambulance which picked us up at 4am and we finally got to bed around 6.

Today I am feeling much brighter. Despite none of us having any sleep I dragged my poor mum and A out this morning to go shopping, as clearly what was needed was to by something frivolous, pink and expensive (which is what I did, it’s a gorgeous chunky charm necklace and I love it). This was the dress rehearsal I have been desperate for, it shows me that this isn’t just theoretical, this is real, and actually could happen for me. “Dry runs” as they are known in America happen to a great many people; one in three calls for lungs are false alarms, and so we knew this was highly likely. I got to see what happens, and more importantly test my own feelings, and I am so more than ready for this. After over 17 months of nothing, this is a wonderful beacon which makes it all the more real for me. More importantly than that, yesterday a family lost a loved one, and at a time of great tragedy decided to donate their organs. Compared to anything I am feeling these are the people who should be in our thoughts right now, and they have given me renewed hope that my chance will come.


Freya said...

I'm really and truly lost for words.

I think i'll comment again later when i can think of something to say that puts into words my true admiration...

keep those pink and sparkly boxing gloves fighting for the next time.

All my love to you and your fab family

Lizzie said...

Hiya Emily
I'm so sorry that this call wasn't right for you, what a rollercoaster. Your strength to come out of that blog with a positive note, amazes me. I hope the next call comes soon and is right for you. :-)
Keep smiling
Lizzie xxx

Anonymous said...

I can't begin to understand how you, or your family, must feel. I hope that you continue to have faith in a tip top pair of lungs being found for you. I know that it will happen.

Best always,

~ James

Anonymous said...

Hey there Em

I have been keeping an eye on your blog and have been sorry to hear you have been so unwell recently.

Keep strong and smiley things will improve.

As for you false alarm, it has prepared you for the next time when it will be for you I know it will.

Sorry havent been in contact much I have moved to Leeds and not online yet. You are never far away from my thoughts and always in my prayers.



Jenni said...

Hey Emily.
I sorry it wasn't your turn this time Huni. You are such a star, just keep it up. Your turn is coming!
Keep on smiling Hun.

Luv Jenni

Anonymous said...

Emily sweetie,I don't even know what to write.I feel so sad that this didn't happen for you yesterday,as I wish everyday that today will be your day for those lungs.I am so proud at your keeping your chin up-ness,yes that is a word ;)Keep fighting ,and fingers crossed it will be second time lucky for you.

Muchly love and hugs

Nic xxx.

Anonymous said...

Hi Em,

Well I can honestly say I know how you feel!! But our time will come chickie hang in there!

Lots of love and big pink hugs!

Lisa :)xxxx

Anonymous said...

Em, you are now well and truly rehearsed and I am a real believer in the phrase 'It'll be alright on the night' so keep your chin up as always and your new lungs will be with you very soon...

Here's to the most amazing person I have ever met and her lungs to be!!

Love you loads

Anonymous said...


Anonymous said...

Just wanted to let you know i'm thinking of you as always - so sorry to hear that it wasn't for you this time, but pleased you have now had your dress rehearsal so are completely ready for the proper performance.

Take care,


Sarah Milne said...

Oh Emily,
So sorry this wasn't the time for you. Now you've had your dress rehearsal you are ready for your show so let's hope the big day comes very soon (but long enough for the bloods to improve!). Bless you for thinking of the donor family too. You still stay so positive and thoughtful towards everyone else. Take care and keep as well as you can so that little body of yours is ready for the curtain up!
loads of love
Sarah xxx

lil fairy said...

hi sweetie, I'm really sorry that this wasn't your time, but i really believe that your time is just around the corner. chin up chicky sending lots of love and pretty thoughts and yay for the pretty necklace too :p

Anonymous said...

Only just realised I can comment here! Well. Hugs from me and Schmamy

Music_Mad_Nic said...

sorry to hear this one wasnt for you ..
hope it comes very soon for you


Anonymous said...

sorry this wasnt the real call emily :( but keeping fingers crossed that you get the real call soon, and this time you'll be more practised at crying melodramatically!!! yay you :P big hugsss

Hillary said...

I'm sure it was so hard to go through everything you did and it didn't turn out in your favor. This wasn't your time and as hard as it is you still have the best attitude and wonderful spirits. You must know that you'll have a time and it's coming and will be worth the wait. Everything will be in your favor soon. Stay strong and smile! Your time is coming. :)

livvy said...

OMG! I log in for an update on your Blog and was absolutely gobsmacked that you were so close to getting those lungs. I'm truely sorry they were not for you, but the next one's surely will be. Keep smiley and keep positive. Much love as always, XX

Anonymous said...

You are such a gracious lady! I dont know if I could be as thoughtful in that situation. It brought tears to my eyes at the thought of you being so happy to undergo such an operation! I hope it won't be long until the real thing! lots of luzzzz MoO xxxx

Emma L. said...

Hi Emily

i am so sorry that you didn't get your new lungs this time, i will carry on wishing for them for you. just hang on a bit longer and i'm sure your turn will come.

emma L xxxxxxxxxxxxx

Anonymous said...

I'm so sorry this time didn't work out for you, Em :( I know your turn is on the way :)

Sending you hopes and hugs, love Kat xxx

And you're right - my thoughts are with those who decided to try and help others, despite their sad loss x

Anonymous said...

Awww Emily firstly thanx so much for the email to me so good to hear from you., and glad you recieved our card to you.:D

You really have had such a rollercoaster ride( in an ambulance blue lights and all!!!). So sorry that 'this time just wasn't meant to be... heres to the next call.....

our prayers and (((hugz))) to you and your family Elaine Rach & family xxxxxxx

Anonymous said...

just had to read the entry through twice - the first time i was reading too quickly to find out what happened, to actually take any of it in!

so sorry things didn't work out for you this time chick, sending you big hugs and best wishes for a 'wet run' (if logic follows...?!´) very soon

lots of love
rach xxx

Anonymous said...

Hey Emi T!!
Ive been logging in religiously lately and felt immediately devastated for you after startin to read the blog if im honest.
but your strength, good spirits and graciousness gave me hope and simply amased me.
You are one in a million, a shiny star and a true hero to many people. so tonight im lifting my glass of malibu and coke in stoupa to you and the follow up of that dressed rehearsal, the real thing.keep that chin up girly. love to the whole family.

love you lots

Anonymous said...

You are a true trouper Em and your time will come, you've too many angels on your side for it not to.


You know what they say about bad rehearsals...and my god, your performance will be worth the wait!

All my love and hugs

Katie xxXxx

Anonymous said...

SHi Emily Pauline here. I am truly sorry that your transplant wasn't to be this time. I know what it's like to be waiting a long time, I waited over two years. The emotions you describe when your co-ordinator called all rang so true to me, except I didn't cry, for once in my life I was speechless and had to hand the phone over to Andy, my husband!

Although I waited a long time, I was really lucky in the fact that I had no false alarms, but was convinced I wouldn't really get the lungs, I still can hardly believe I did get them, and what a huge difference it has made to my life.

I wish you all the best of luck, and hopefully it will happed very soon for you.

Lots of love


Anonymous said...

I'm so sorry Emily - what an ordeal to have to go through. But you have put such a marvellously philosophical spin on the experience that I can't help but admire you even more (if possible).

You're blog is fantastically uplifting to anyone reading it, and you so, SO deserve the next call to be the right one.

Everything crossed for you,

Love DJ.x

Anonymous said...

I know there will be lungs for you. I'm so sorrry it wasn't this time. Take care and I send much love and strong thoughts and hugs

Anonymous said...


I have been reading your blog for a while now and was so disappointed to hear about the false alarm.
My girlfriend also has CF and she was lucky enough to have a Lung Transplant in March of this year - at the 5th attempt!! From what I have read you don't need any encouragement to stay positive but remember having a false alarm only means you are one step closer to your transplant!!
I am running the Great North Run this year to raise money for the CF Trust and wanted to put a few links on the justgiving page I have setup (next year my girlfriend will be joining me on the GNR and we will raise money for a transplant charity!!)

One of links will be to the Donor Registration page and I was hoping you wouldn't mind if I put a link to your blog on there as well? ( the way I see it is if someone reads your blog there is no way they couldn't register!!)
I know that is is accessible to all anyway but I thought I had better ask!!
You can let me know either on your blog or by emailing me at

Anonymous said...

Holy Mackrel Batman!

What a day! feel like I just lived that with you, and it was tiring just as a reader. I couldn't get my eyes to read fast enough!

I truely believe that this is a sign that you are well on your way to some fresh new lungs. I have every faith that they will be here soon.

I was getting all upset about work yesterday, but reading your thoughts always puts everything back in perspective.

You're a true inspiration to hundreds Em.

Emmy Lou Russell! xxxx

Emmie said...

Just one simple message after reading that Em...I love you to bits and pieces and we WILL get you those lungs I promise. In the meantime, keep really is the best undiscovered medical treatment to date ;o)

Emma xxxxxxxxx (who is trying to fill in a guestbook in German...)

Anonymous said...

It must be so frustrating! Be strong and fingers crossed for next time. xx