We have had a busy week campaign wise – a young girl called Jessica who contacted us requesting to help has had her story picked up by several Media outlets, including her local BBC news and the Sun newspaper. If you click on the BBC article link and look on the right hand side of the page, you can view Jessica's interview online. I was interviewed as the expert opinion (not my own label, I suggested UKT but they said they wanted someone from our campaign) and Jess and her mum were interviewed, putting across a thoroughly powerful and emotive message. I believe that it is only through real life stories that we can really motivate people to understand the importance of organ donation. Emmie and myself are continuously grateful to those who come forward to share their stories, and hopefully save some lives by doing so.

Last night I gave a talk at the 41 club – a club for ex Round Tablers. They were a lovely group and it went really well, with all members taking at least one donor registration leaflet afterwards, and many taking several for friends and family as well. I have had two further requests stemming from this talk, so hope to increase my reputation as a guest speaker and continue to spread the word in this way. I think I am lucky that I do not mind (in fact enjoy) talking about my situation and therefore should use it to help others have the same chance as me.

Surprisingly (well I found it surprising) there seemed to be quite a few requests to learn a little more about the mysterious ‘A’ (you romantic lot you). Unlike me, (a born drama queen who enjoys spilling her life to anyone and everyone and could talk for Britain) A is a far more reserved and private person, therefore for his sake I would like to be vague about…well pretty much everything really.

I have known A for many years. We have grown up together as people, and the obstacles we have encountered throughout our relationship have just strengthened us I think. People think I am brave to have gone through the past year or so, but I had no choice. He could have walked away but never ever did.

Monday marked our anniversary. On Monday evening, on our way to a restaurant in London, A got down on one knee and proposed. I may have cried... A lot.

I am the happiest girl in the world right now. I cannot believe my luck so far this year, I am spoilt beyond comprehension and keep thinking that this is all a bit of a dream and I will wake up with a sharp jolt back to reality. A has always been there for me, he has been my rock, and now I get to spend the rest of my life trying to make him as happy as he has made me.

It strikes me that how others perceive you has a dramatic affect on how you perceive yourself. My parents have never ever allowed me to feel different, and I was most certainly never allowed to feel “ill”. One of my mum’s biggest fears is that people would tiptoe around me, treating me differently, leaving me out of activities and letting me get away with things due to my illness. They wanted people to get to know me as “Emily” not as “that girl with CF”. Consequently my parents decided not to tell anyone I had CF when I was born. At all. The other main reason for this was they wanted me to have the choice of talking about it to whoever I wanted, whenever I wanted. When I commenced primary school, they informed the headteacher (for safety reasons) but instructed that no one else was to know, and the good woman that she is she kept her word. I merely took my tablets to school in my lunchbox (something that would be grossly frowned upon now with all the health and safety regs) and no one else really needed to know - I could line up, run around in the playground, do PE and every other thing a normal infant had to do at school.

One day on the way to school (which was incidentally nearly a mile from my house, probably what stretched my lungs to be so strong and withstand all the pummeling CF gave them) I was skipping alongside a fellow classmate whilst our mums chatted, and we were talking about cartoons on television. She asked if I watched Captain Bucky O Hare or some such classic, and I replied casually “yes, actually I watch it before school whilst having my fizz” (which was my name for Physio). This left a rather confused friend and an appalled mother with the idea that my irresponsible mum allowed me to sit with a can of coke in front of the TV every morning. I believe she left them with this image for amusement purposes.

As I grew up, it quickly became apparent that I was perfectly happy talking to anyone and everyone about CF, and it became much more public knowledge. But by now I had a reputation for other things, for being good at English, enthusiastic about pretty much everything (whether I knew what it was or not: “I joined the choir today….mummy, what’s a choir?”) and for being undoubtedly the most talkative member of the class. So CF merely became a part of my personality, which people seemed to quickly accept as they already knew I wouldn’t fall apart and break at the slightest cough.

As I say I was never allowed to think of myself as ill. My parents were also fairly strict. Weight gain is a very difficult issue with CF and my parents would not tolerate me not eating at meal times. There was simply no other option. If I didn’t make a good enough attempt, the kitchen door was shut and I was left in there alone till I had eaten sufficiently. Whilst I rather suspect this is not in the CF Trust’s guidelines of how to deal with fussy eaters, it appears not to have done me any harm, and I have never needed any form of artificial feeding (NG Tubes or otherwise) as I am exceptionally talented in the force feeding area. Missing school was an absolute no no, unless I had an arm missing or similar. Again in my opinion good, as I quickly learnt that having CF didn’t allow me to get away with anything, however this also taught me that it didn’t disqualify me from anything either.

I am positive that my parents’ attitude and behaviour has made me the person I am today – all the good and the bad bits. Even the bits which caused me to howl with rage in my bedroom and write viciously about in my diary (well like any child really) don’t seem to have done the long term damaged that at the time I was clearly convinced their tyrannical behaviour would. I suppose I am in a round about way attempting to praise my parents here, but hopefully they won't read it. Particularly my mother as she will become impossible.

Just to ensure her ego doesn't jump too high, I will end with what I find an amusing and classic example which occurred today of why I perceive myself the way I do.

Scenario: Have just picked up my mother to drop my prescriptions into the doctors whilst I hover in the car.

Me: Hello! Did you have a lovely day?
Mother: Yes fine thank you, (serious tone) although I did have to leave work early to go and see the doctor.
Me: (somewhat alarmed) Why is everything ok?
Mother: No, I have had this REALLY BAD rash covering my face for about a month, it’s terribly serious. (proudly) I have been given a real prescription and everything for some important face gel.
Me: (somewhat confused) Really? (trying to be reassuring) I haven’t noticed it at all, honestly.
Mother: (in a fit of indignant rage at said rash not being taken seriously) that is because you are completely involved in your own health and haven’t managed to notice my serious MEDICAL ISSUES!

Cue stupefied pause followed by gales of hysterical laughter from us both.

I love my mum; she really does know how to bring some perspective to ones life.

Now I have finished telling the Harefield part of my story, (and enjoyed telling it) I am looking for other things to write about. Seeing as I am not convinced my life is all that interesting, is there any “chapters” people are particularly curious about? Otherwise, as you may have noticed, I shall just rabbit away randomly about anything and everything (surprised "surely not" faces please....)

Bit of a long entry here, sorry about that...but it is the end of my Harefield journey! Clearly not the end of the story though, as a whole new chapter in my life has now started, one I could only dream of being lucky enough to have.

Life on the ward was vastly different from the Intensive Care Unit. The atmosphere there was one I was much more accustomed to, of a more general ward with constant comings and goings of staff, but essentially a lot more privacy and also responsibility for me as a patient. I was still attached to the bi-pap via my trachi, but was able to spend increasingly longer periods on just oxygen, which was given via a high flow mask directly into the trachi. After a few days on the ward, I tried nasal specs for a short time, which was another huge step for me, as I was accustomed to wearing them and had been for the previous to years, so this felt to me like a move towards normality. My family were able to all come into the room (it’s two at a time in ICU) and we were together the five of us for the first time in months.

I would still await eagerly for the physio to come and take me out, and as I was spending more and more time off the machine, I was pushed to walk increasingly further along the corridor, with two physios in tow, one supporting my arm (I was still incredibly unsteady on my feet) and the other pushing a wheelchair so that when I became too exhausted they could push me back to the room. There was a white circle on the floor of the corridor, and I was informed that this is where people aimed to get to, and would then be made to do a little dance of celebration once they had achieved this distance. Having been told this I instantly decided I would reach it by the end of the week, and did so, triumphantly, my wobbly legs only allowing a short wiggle of a dance before I sat hurridly down in the wheelchair with a bump.

By now I was eating fairly normal foods, although everything still had to be soft and moist, as the trachi meant swallowing was still difficult. My family began to bring in bits and pieces of food for me – my grandma made a vegetable soup and drove it up, the cook at A’s work would prepare me little lunchboxes with a variety of salads and fresh foods – the home cooked taste was indescribably luxurious and helped increase my appetite and eagerness to eat.

My confidence increased with my progress, and I would try and stretch myself a little, by getting out of bed myself (a long and laborious procedure but I learned little tricks like rolling onto my side first before attempting to move to an upright position) and brushing my own hair. I was attempting to move back to the bed, a nurse next to me to ensure I didn’t slip, when I began to feel funny. Assuming it was a panic attack (which I hadn’t had for a while now) I told the nurse I needed something to calm me down and that I was struggling to breathe. Before I knew it another nurse was in the room, he’d been watching the monitors outside and my heart rate had spun out of control. As the two of them moved me back to the bed, I lost consciousness. I came round to find about 7 people in the room, attacking me from all sides, and the bagging mask on my face. Apparently I had passed out and my CO2 and jumped through the roof. Whilst they attempted to get an arterial line back in the doctor had bagged me, and as soon as she did I began to regain consciousness. I lay there, my eyes refocusing slowly and heard the doctor say “sorry I called you back, I thought we were going to have to shock her”. I glanced sideways to see the crash trolley primed next to me.

My mum had been called and arrived about 20 minutes later. Weirdly, in spite of what I (and everyone else) feared, this episode didn’t knock my confidence as much as it should have. The team investigated everything they possibly could, and several different specialists came to see me, but it was decided that this was probably (and hopefully) a one off weird reaction, and that it wouldn’t happen again. With this evaluation of events, I narrowly escaped returning to ICU for closer monitoring, and decided to try and continue moving forward as quickly as possible, to prove to them all that this was a mere blip in my recovery and I was actually still progressing nicely.

In spite of early hopes that I would be well enough to attend Laughter for Life, March 4th loomed and it became obvious I would not be up to it. As upset as I was (we had worked long and hard on this and I wanted to see the fruits of my labour, let alone meet Bill Bailey and Dara O’Briain!) I knew how lucky I was because at least the reason I was missing it was due to my newly instated working lungs. Adam’s sister came and sat with me for the whole evening, we watched Will and Grace and munched on a takeaway and had really quite a pleasant evening. After the show was over, Bill Bailey phoned me to let me know it had gone fantastically well and that it was one of the best charity gigs he had ever been involved in (due to still only being in the early stages of relearning to speak I managed not to squeal down the phone at him).

On the 5th March, it was decided that I had managed to spend enough time on oxygen alone to warrant a sleep study minus the bi-pap. I was slightly nervous but by now was enjoying the feeling of breathing unaided, even though it was still slightly hard work, and was much more confident in my new lung’s abilities. The following morning, the team strode into the room. “Well your numbers look fine, let’s get that trachi out shall we?” the doctor said, rolling up his sleeves. I immediately panicked at the idea of this new change in the amount of support I was receiving¸ but the SHO reminded me gently that they wouldn’t do anything they weren’t convinced I was ready for. So the neck collar and the fastenings were loosened, I was instructed “big cough”…and out it came. As I breathed in I could feel the air whistling through the hole in my neck (not particularly pleasant but not painful at all) but they stuck a plaster on, informing me that the hole would heal itself within a week or so. As we sat waiting for me to become accustomed to the lack of tube protruding from my throat, the doctor glanced at the monitor. “Your sats are good, 98%...ok let’s loose that oxygen shall we? And the NG tube whilst we’re at it.” The NG tube was removed, making me cough a little, and then my nasal specs were taken away from me.

I felt almost naked, that there was something essential missing, I suspect you would feel something similar if you went out without shoes on or something. I had been wearing oxygen full time for 2 years by then, and over night since 2003, so suddenly having no tubes at all felt incredibly weird. After about 5 minutes I tried to suggest that perhaps I did need it for a little longer and would they please give it back, but the doctor merely laughed and replied that I no longer needed it…my lungs were working. Once the team had left, I got off the bed and wandered slowly round the room. No tubing to hold onto and to watch that I wasn’t pulling too far or to tangle round the bed, just freedom to move. That evening my sisters arrived and saw me tubless for the first time in years. They instantly clambered on the bed with me, able to get close to me without wires and oxygen getting in the way.

The following Thursday marked the birthday of a rather special mummy, and all she wanted was for the whole family to be together. We discussed the idea of all getting a takeaway and squeezing into my room, but it was clear this would be a)near impossible and b)require great skill as people would have to stand up balancing their plate and another dish as there was virtually no surface space either. As we talked through the options, I toyed with the idea of leaving the hospital. I was terrified at the thought, I hadn’t yet left the hospital grounds, and the idea of being further than arms reach from a nurse was not a comfortable thought. However my mummy’s special day overrode my fears, and I cautiously agreed to accompany them all to a restaurant. We took two cars, incase I needed to return quickly, and sped off to a small Indian restaurant in the village. As we drove out of the gates my stomach flipped over. I was setting off with no oxygen, away from medical intervention, to have my very first independent experience with my new lungs. I was still lying down for the majority of the time so sitting up in the restaurant was hard work. The meal was lovely, my mother was beaming from ear to ear, and we all toasted to my first attempt at freedom.

The next week, the team strode in as usual to ask their usual questions and perform their usual tests. A and I sat there half listening, half continuing to chat when the main consultant said “well things are looking really good. Best possible outcome judging on today; discharge next week.” Stunned I muttered something along the lines of thank you, and they swept out the room closing the door behind them and leaving A and I to say in unison “oh my GOD!”. I phoned my mother immediately who became somewhat hysterical and even louder than usual. It had gone from looking like I would be in for months and months to suddenly talking about me being at home, full time, with my new lungs.

On Friday 16th March, my mother arrived at Harefield and entered my room for the last time. Two HCA’s had been in all morning, painstakingly removing my cards one by one from the walls, and helping me gather my mess into relatively organized piles to transport back home. We attempted to act as though this were a normal visit, both of us secretly afraid to say anything about home incase someone came in and suddenly told us there had been a change of plans. As my mother took the final bags to the car, I began my final slow amble down the corridor, hugging various nurses and promising to take good care of myself. I pushed the door open and the cool breeze hit me hard as I stepped outside. The car pulled up and I slowly eased myself in and fastened my belt. As we started moving forward my mum looked at me, grinning manically. We drove through the gates, shrieking, a cross between laughter and tears; the initial part of this journey was over, and life with my new lungs and a wealth of opportunities, experiences, triumphs and challenges was about to begin.

Oops, not quite the promised next day update then!

Harefield went fine. I was dropped there early in the morning and went and performed the obligatory tests. As soon as I saw the lung function numbers (which were considerably higher than my readings at home) I knew I would be ok to go home that day. Which I duly was, sent away with the warning that if the wheeze doesn’t disappear and the lung function continues to be silly then I will need a bronchoscopy for further investigation. If my memory serves me correctly I spent the whole of the last one I remember begging them to take the camera out, so good luck whoever has to perform that.

This morning was great fun, with Watchdog coming to film a very short “what’s happening now” clip for Wednesday’s programme (there no one can say I don’t tell them now). I will probably appear for all of 30 seconds so really not worth setting your video for. The crew took me to my local park – the last time I went there I was sitting in Denzel, with a cylinder of oxygen by my feet, wrapped in layers and glowering as I was cold and did not wish to be outside (charming patient I know). Today I walked into that park, across the grass (Denzel was never a fan of grass so it’s quite a novelty) and we filmed me sitting on the swings; something I haven’t done for a long time as I suspect a Clairette (oxygen cylinder) flying at a child’s head would count as a slight health and safety liability. There is something about sitting on a swing, I think it takes you back to a happy carefree time in your life and just makes the world seem bright, safe and accessible. I may or may not have swung back and forth like a child until I was asked to remain stationary for filming purposes.

So the filming was fantastic fun, and I got a little outing whilst doing it. And as always when I do these media things I got to meet a group of new people; I love meeting new people, although I now tend to talk so much not one of them can get a word in edgeways.

My main task next week is to join the gym. I now have clearance from Harefield to do so (they mentioned something about taking it slowly but I don’t really remember what they were saying) and I just have to pluck up the courage to go and join. It’s a fairly daunting prospect as I have never been sporty (it was a lung transplant, not a personality transplant) but I am excited at the idea of training properly for the Hydro active (for which we now have a team of over 40 Angels – places are filling up fast so hurry and get in touch if you want to join us!) As much as I try and convince myself, I am not sure that shoe shopping really counts as hard-graft…

Incidentally, I have discovered the perfect excuse for purchasing yet more new shoes. Wear completely impractical ones that hurt your feet within 10 minutes of entering the shopping centre, complain loudly, and your other half instead of berating you for filling the only shoe cupboard in the house to the brim, will be only too pleased to accompany you into a shop to purchase yet another pair…

Quickest of quick posts to say that Harefield went fine today and I am home (yay) and will write more tomorrow when my eyes are not insisting on closing of their own accord!

I had the BEST weekend (mind you I seem to be starting the majority of my sentences with “I had the BEST…” recently).

A had clients to see/business to do up in Manchester, and for the first time, I was well enough to go with him. As we planned the weekend, scheduling in when he would be busy working and where I would go and what I would be doing, I began to get quite nervous; I haven’t been an independent adult before really, not since my first year at Uni anyway. In recent years I have always had people around me to help me and to accompany me, and have never really been anywhere I don’t know, as hypothetical problems would arise such as “what if I get into difficulty breathing or get tired? What if I run low on oxygen? How can I get back quickly if I am in unknown territory?” Due to these questions being fairly foreboding and unanswerable, I tended not to stray to far from familiar ground. Not to mention of course the mandatory “stay two hours from Harefield” rule which penned me in somewhat.

Anyway, I was most definitely scared of going, just a general fear of the unknown and of behaving in an adult fashion (something I am really not accustomed to doing). The drive of people I would see up there and things I would do however was enough to override this (along with A’s reassuring words of “don’t be silly you’ll be fine”) and we set off “oop North”. Our first stop was Liverpool. The first night we stayed at a beautiful Hotel, which overlooked the huge expanse of the local park, green as far as the eye could see and uninterrupted except for the odd early morning dog walker or jogger. The next day I joined my friend, an ex-flatmate of mine who knows me so well it’s annoying and who now studies in Liverpool. It was fantastic to get to actually see her life up there, what she is up to, meet her friends, go out to some of her local haunts…all things I never thought I would be able to do.

On the Saturday, I rejoined A, and we headed over (notice I use the word “over” instead of a geographical direction as I don’t have a clue where abouts I was in the country nor where I was headed) to Derbyshire, to visit my granddad, who is one of my heroes in life, and who incidentally is 91 and just got a mobile phone. It was an absolutely glorious day, the sun was shining and Derbyshire is just so picturesque. We sat basking in the warm sunlight and talking until late afternoon, when we set off back to Manchester for the final leg of our journey.

We stayed with A’s friend (I was last able to visit him over 4 years ago) and I was spoilt rotten and treated like a princess - two things which I am quite comfortable with. On the Sunday I was able to meet up with Mr Pimpdaddy of pimpthatsnack fame, and his lovely lady, both who have been incredibly supportive to me and the Live Life campaign (see people are just awesome, I know I say it all the time but it’s true). This meeting resulted in the taking of muchly photos near a tree which was adorned with paper flowers and butterflies (I liked the tree and insisted that all pictures be taken with it included.). they dropped me off on the main road, and I wandered back towards the flat. I hope no one was watching me because I may have looked like a madwoman; I was beaming from ear to ear and laughing to myself, just the sheer overwhelming pleasure of being alive and being able to have all these experiences. Life isn’t about the huge stuff you know, major aims, aspirations, ambitions…those are important of course but it’s all the little bits, the moments which are happening right here, right now, that make it what it is.

After a truly spectacular weekend, it’s back down to earth with a bit of a bump today as my lung function, which has been beautifully behaved so far developed a mischievous streak and dropped by over 10% today. Dutifully, I telephoned Harefield and have been asked to come up tomorrow to be checked out.

After a thoroughly busy week last week where I was hardly home at all, I have decided that this week should be a little less hectic. It’s just I am so eager to take up every opportunity that wasn’t open to me before and drinking it all up thirstily. I also have a slight fear deep down that this is all going to be snatched away from me; I have had well periods before, but they would always just be a temporary thing before the next decline. I am still having trouble getting my head round the idea that things are going to improve not get worse! I am running on the automatic response I have developed over time of trying to cram everything in as quickly as possible so that I don’t miss out on a single thing. Mind you, it isn’t doing me any harm, I am sleeping well, and I am sure I will relax a bit as time goes on and I get used to being able to just “go and do”. SUCH a lucky girl...

As February progressed, so did the improvements in my health. I moved on from mere liquids and tasted soup (which the lovely dinner lady strained for me) for the first time. They would also regularly deliver different flavour juices to get my taste buds working again. On her next visit, the swallow lady agreed that it was probably time for me to attempt some very soft food. In complete over excitement I selected lasagne, much to the dietician’s horror, as she had envisaged a yoghurt or something similar, and pointed out that my idea of soft may vary from theirs.

I had done away with the ventilator completely by now and used only bi-pap, spending more and more time on just the trachi mask with no support at all. Even though it was still hard work as the medical team continued to push me, I enjoyed increasing amount of time I spent being able to breathe on my own and not having air forced in by any mechanical means. I still needed assistance in sitting up and moving to the chair, but it now only took one nurse to guide me gently round as opposed to two nurses plus a standing frame.

My physio continued to find new and interesting ways to try and test my strength and expand my new lungs. One Tuesday she wheeled in a large exercise bike. Getting on it was probably the biggest obstacle but once on I managed several minutes continuously before grinding to a halt. The factor which caused me to return to my chair was actually the hard and awkward shaped seat hurting my rather skinny behind. The entry of the bike into my recovery was a big boost; I remember clearly the summer before when I had a collapsed lung and a chest drain in situ, sitting on the bike, peddling slowly with tears running down my face with sheer effort, so now a bike was in place I was in more familiar territory.

Things moved rapidly on from the bike. I was lying in bed watching the door, waiting for the physio to arrive, and she bounced in brandishing a CD which turned out to be something along the lines of “The very best line dancing album in the world ever”. So up I got and holding onto a physio either side of me began an unsteady and slightly uncoordinated line-dance, weaving side to side and forwards and back, in time to the music. My brain wanted to do a sharp, slick, synchronised dance but my legs would only let me shuffle and wobble to and fro, like a pensioner who has had a tad too much sherry. Our strange trio hobbled around the room, much to my mother and A’s delight, until my legs began to buckle and I sat back down on the bed. When the physios left, A pointed out that even though my legs had given way, I was hardly breathless at all; already a huge change to how I would have been with my tiny old breathers.

The day after this comical dance routine, it was decided that I was well enough to be moved to the main Transplant ward. This would be a huge step in the right direction, with small but precious differences such as the open visiting hours bringing me one step closer to normality. I was extremely nervous as during my time in Intensive care, I had had a nurse with me 24 hours a day. They were prepared for my anxiety and had been trying to get me used to it by leaving the room for short periods of time over the last few days, but I was still very unsure of how secure I would feel, alone in a new environment. My nurse from ICU came down with me and stayed with me for the whole afternoon, setting up my room and putting up my cards so it looked a more warm (and infinitely more pink) environment. As her shift came to an end, she smiled at me warmly, squeezed my hand, told me (again) that I would be fine, and shut the door.

Being alone for the first time in 2 months was extremely strange. There was an eerie silence, as I had become accustomed to the gentle lull of noise and discordant bleeps which permanently echoed around intensive care. I lay perfectly still – a strange instinct which comes into play whenever I feel threatened or unsafe, as if by being still my body won’t let me down – and concentrated on staring at the cards which adorned my room to keep from panicking. The ice blue plain walls which were usually so cold and uninviting were literally covered in cards of all colours of the rainbow, although admittedly predominantly pink and most with a few glittery bits so they would sparkle as the fan caused them to move gently in the breeze. As the minutes ticked on, I began to feel more relaxed, and before I knew it the nurse was in the room drawing up the evening drugs. It took a few days to get used to this new lower level of care, but as time went on I began to enjoy the new periods of privacy this allowed me to experience.

Went to Harefield yesterday for my regular check-up. Things continue to look good with both lung function and blood results improving (woohoo!) I found out yesterday that I have a paralysed diaphragm; during the complex removal of my old lungs the nerve which runs to it must have got damaged. Apparently there is a chance it will come to life in the next few months but it might decide to lay around in a dormant and slobbish fashion forever. I was a tad anxious about this as you can imagine (one would assume the diaphragm is quite essential for breathing and the like) but was told I shouldn’t worry too much I just might never get full capacity with my new lungs. I also do have some remaining damage from the huge infection I contracted at the beginning, but that didn’t surprise me as it would have been a miracle (or the ending of an overly cheesy film) if I had come out of that unscathed.

Seeing as I already feel so amazing with 50% function I think I am extraordinarily lucky as it is and will focus on how I feel now as opposed to where my lung function might/should be. I was also told I can now go swimming, which I am completely over excited about as I used to love swimming and haven’t been for well over two years. You will be able to hear the whooping and yaying all over the country when I step into that pool for the first time. People are already signing up to do the Hydro Active with me (hurrah!) and we have just set up a justgiving page (which is still being jiggled about and added to): www.justgiving.com/emilysangels2007

The 11th February was a day of excitement on the ICU ward as Richard and Judy came to visit. Although still feeling considerably down and nervous of pretty much everything I was awake this time and looking forward to seeing them. They came in one at a time with my mother and were wonderful visitors; my mum said she hadn’t seen me smile and look that animated since I had the transplant. They also spoke to other patients and relatives on the ward, lifting the atmosphere considerably and bringing a rare but positive excitement to ICU.

I remember the day after that very clearly, as it was a dreadful day panic attack wise. I started to get quite severe ones whilst on the ventilator, but even once I came off it they continued to escalate and I would almost paralyse myself in a state of fright. I was furious with myself as I knew it was psychological and felt I should be able to get them under control but it was just impossible. I had had minor panic attacks before but all my usual techniques such as picking up the phone and phoning someone or moving around and doing something to distract myself were obsolete as I was still stuck in a horizontal position and unable to speak. A friend and my youngest sister came to visit and watched helplessly as I worked myself up into attack after attack. Over the next week continued talks with the psychologist and advances in my health would help me get these retched things under control.

This Monday was also highly significant for a much more positive reason; the speech and language therapist came to visit (who I renamed “the swallow lady” due to my eager focus that this lady would allow me to drink again for the first time, and much to everyone else’s amusement). She examined my swallow reflex and decided it was safe to give me a few sips of water which was dyed blue, so they could confirm that I was not aspirating it into my lungs. After passing this test, I was asked what I would like to drink (clear liquids only) and chose apple squash (which my uncle had driven up specially on my request). After over 5 weeks of nothing passing my lips, to sip a sweet juice was just heavenly. Drinking is the thing I missed the most (more than talking surprisingly); I think it must be deeply embedded in human nature to drink as despite the fact I was drip fed therefore not thirsty, I yearned for a drink and frequently dreamt of just gulping great glasses of juice or even just water.

Two days later marked another huge landmark in my recovery and return to humanity; I tried the speaking valve for the very first time. A couple of days before I had had my first experience off the ventilator with just a “trachi mask” on (a mask which blew 8 litres of oxygen into my trachi but had no mechanical support so I was breathing on my own) and had managed a grand 10 minutes before becoming tired. Each day I built this up gradually, and was now ready to try speaking with my new, slightly-stronger lung muscles. The first thing I said was a very unimaginative “hello” and the second “I don’t like this” (meaning the feel of the whole thing, what a delightful patient I was). My mum came to visit that afternoon and I put the valve in as a surprise for her, so when she entered the room I said “hello how was your day” at which she started to respond as normal before screaming with excitement when she finally clicked.

These two small replacements of normal human behaviour seemed to really boost my confidence and spirits as the improvements continued at a good pace. On Friday 16th, the physio came into my room and announced we were going outside. I was slightly taken aback and assumed she had the wrong patient, as I was still wired up to huge amounts of equipment but no, she, two nurses and a technician all began busying around me, moving various machines, monitors, catheter bag and drips onto a large metal trolley and helping me transfer into a chair, wrapped head to toe in blankets. Our strange procession weaved its way slowly through the unit, and out of the nearest fire door. The blast of fresh air on my face took me aback sharply. I hadn’t experienced any fresh air at all since entering ICU as you are not allowed to open the windows to due infection control regulations. The air was crisp, fairly cool and extremely fresh. I struggled to focus in the daylight, and looked over to where the road was to see cars going by and people walking along the pavement, going about their daily business. The intensive care unit is really like a whole separate world and I was becoming fairly institutionalised by this point. Despite my fears of going outside (leaving the safety of the plug sockets and O2 to be reliant on battery packs and a cylinder made me extremely nervous) those 10 short minutes were enough to start stirring my senses again, senses that had been dormant for the last month and a bit and now needed to be awoken and used once again.

Just a very brief post...

In reference to my previous post:

Edit and disclaimer one: Contrary to what it may appear, my wonderful mother accompanied us on said beach trip and made the occasion what it was. This announcement was made due to my own guilt and not at all because she has hounded me constantly with a sulky face at being left out.

Edit and disclaimer two: To any of Abby's teachers who apparently read this(!) I kidnapped her and forced her at gunpoint to accompany us. And no I won't do it again.

All authors notes out of the way, more exciting news, I have taken a big breath (yay that statement is no longer ironic!) and signed up to do the Hydro Active women's 5k in september. Last year I took part but was pushed round in Denzel for the majority of it (slideshow of the whole thing on my myspace page). I was given day release from the hospital where I was spending time recouping after a series of collapsed lungs and we raised over £15 000 as the Emily's Angels team.

So am muchly excited at the prospect of walking over both the start and the finish line! I am being sensible about it and asked my team first, who said I should be able to manage it by then although I may need to take breaks along the way. It will take a huge amount of training but hey that's what challenges are for!

Sidestepping my story again...It is exactly one month since I was discharged from Harefield and looking back at my recovery so far it is clear how far I have already come. Each day I have found myself growing increasingly stronger; my shakes – which started out so strong I couldn’t hold a cup of tea without spilling it - have almost faded to nothing. I no longer need to push myself up from a chair with my hands, as my legs are now strong enough. I find myself grinning inanely sporadically throughout the day, for example after going through a door and automatically reaching for the tubing which gets caught under the door which of course is no longer there. Every day there are a thousand little moments where I stop and think “I can’t believe I am doing this, I can’t believe I got my transplant” and have to pinch myself to believe it is all real. Some highlights and landmark moments are as follows:

Cooking a meal for myself for the first time since the op

Bending down to pick stuff up off the floor/do my shoes up (the latter being the more common phenomenon) and not getting breathless.

Visiting several friends’ houses I haven’t been able to go to for ages because they live upstairs.

Walking round my garden (my tubing didn’t previously stretch far enough)

Having a bath without becoming breathless and exhausted

Being able to dry myself without above consequences

Being dropped off by A and getting out the car myself and walking to my destination, no assistance required.

Going shopping on foot, not in my wheelchair, and being able to see over the clothes rails for the first time in years.

Going to the hairdressers instead of her having to come to my house.

Eating a huge meal, feeling really full…but still being able to breathe.

Going and going until I become tired, then resting and my energy comes back, as opposed to entering a vicious cycle where breathing becomes increasingly impossible.

Driving in the sunshine, singing along to the radio.

And of course walking out of the front door, with just my keys in my hand, and striding down the road.

Today we celebrated my first month of freedom by doing a Thackray girls trip to the seaside. It was the most beautiful day, spent with ladies (I can’t call my baby sisters girls anymore really!) who have been there constantly for me, but usually having to care for and help me, unlike today when we were just relaxing in each others company.

I ran for the first time today, rather resembled a young animal unsteady on its new legs I think but it felt great. I ran straight into the sea and got my impractical long white skirt soaking wet. Brilliant.

Lucy in the middle auditioning for Fame or similar…my attempt at leaping gracefully not quite as successful.

Thank you for all your feedback on my previous post, I learn something new from everyone I speak to (or hear from) so appreciate others giving their opinions. Health-wise things are going really well, I got a new hair cut that nicely covers the patches of hair that were rubbed thin by lying flat on my back for so long…so finally said goodbye to hospital hair (yay!) – a real confidence booster. (Have just realised talking about hair is not really a health report but that shows how well things are going!)

Concerned about the continuing low readings of nutrients in my blood, and my inability to keep my feed down, the team contemplated more drastic measures such as TPN (where all your nutrients are given directly into the vein). They were reluctant to do this due to the very high infection risk, so started it then stopped it, and began discussing putting a camera into my stomach to investigate further. My tolerance threshold being rather low, I firmly mouthed “no” and subsequently was never sick again. My mother says that this strange exhibition of obstinacy has shown itself once or twice before, where doctors have either written me off, or predicted something I do not like the sound of, at which apparently a look appears on my face and I seem to go in the exact opposite direction; whoever said stubbornness was a bad thing!

On Monday 5th February, the team strode into my room and my doctor announced that I was doing so well on low ventilation support they were going to try me on the bi-pap (which aides breathing by pushing the air in for you but you trigger the breath so gives less support than a ventilator.) I was immediately terrified and asked to be given something to relax me before we tried it. My doctor refused point blank and told me that I would be fine, he would talk me through it. They switched the machines over and told me to just breathe nice deep relaxed breaths. I concentrated on breathing in time with the doctor, and quickly discovered I actually liked this sense of freedom the bi-pap was giving me. The ventilator gave much more controlled breaths and as I used it less and less (I alternated between the ventilator and the bi-pap for some time) I found it claustrophobic and restrictive.

Around this time I also stood for the first time without the tilt table; this was one of the hardest things I had to do. I still had the vac pump on which was constantly sucking and restricting my ribcage, and when I changed to an upright position which I was not accustomed to I thought I couldn’t breathe and would begin to panic. The struggle to push myself up onto my feet, despite having a nurse, a physio and a frame to help me, was tremendous. I cried with frustration at my inability to seemingly do anything and felt that I would never be my normal self again. Later on that week I had progressed to shuffling three very tentative steps, a confidence boost which helped me refocus. I loved the physiotherapy sessions, no matter how hard they got; it felt like I was doing something proactive about my own recovery (plus I could see the results and improvement on a daily basis) and would wait eagerly for the physio to come in and tell me what we were doing that day.

As the days went on, my recovery continued, but mentally I really began to struggle. I started to berate myself as I am used to remaining positive and having a good focus and now was unable to see the light at the end of the tunnel. Whenever I had had a CF related exacerbation, I had generally been able to remain positive as I had a target, a position health wise which I knew well and which I was aiming to return to. Suddenly, the other side of transplant I felt lost; I was in brand new territory now, this was all untried and untested with me so no one knew where I would end up, and I didn’t have confidence in my new lungs and the ability of my body to overcome this never before encountered hurdle.

Determined to try and snap out of this all-time low, I requested to see the psychologist. Luckily she was a fantastic lip reader and we managed to have a good long session discussing many of my fears and worries and talking through some processes to try and tackle them. One thing she told me to do was to start writing things down. This I found terribly cathartic as being unable to talk I had not really been able to share my thoughts in any real way.

Later that week it snowed. My nurse was describing it excitedly when she arrived for the morning shift, and helped manoeuvre me into a more upright position so I could see out of the window. The woodland which my window looked out onto appeared to be decorated with white lace; it looked like a strange fictional world, like a scenic Christmas card, not like hospital grounds. That day was also a dressing change (which happened every other day and which they were still putting me to sleep for) which delayed my mum being allowed in my room. When she was finally let in, she was angry and upset. I got upset too and was annoyed thinking she was overreacting somewhat. I didn’t know at the time she had just spent half an hour in the waiting room with a woman who was then called in to be told her daughter had died. Like all my cheering squad, she constantly pushed her own fears and worries back to make sure she could support me as much as possible during these turbulent weeks.

Side-stepping my transplant story again for a minute, I had an interesting chat which prompted me to write the following. These are just my thoughts on the matter; I would be interested in other people’s opinions too (my guestbook on the right hand side allows private comments if you would rather your opinions not be public).

Concerned for a mutual friend who is struggling at the moment both physically and mentally (I am sure they will know who they are when reading this) I was discussing having a positive attitude with a friend. When trying to convey how I felt that their perspective needed changing, my friend replied “some people just don’t have the same outlook, and you can’t change that”. For some reason that took me by surprise, and this isn’t the first time I have come across this mental block of mine. I wrote about it in an old blog; is positive mental attitude inherent or is it something you can create? This is where I personally believe perspective is a big factor here; where it depends on the angle you are coming from as to what you see, although whether one gets to choose that angle or not is another matter.

It is hard for me to understand. Mind you no harder than it ever is to try and comprehend someone else’s feelings, to try and put yourself in their shoes. A certain amount of my positivity is surely genetic (anyone who has met my mother will know what I am talking about) therefore I am lucky that I often automatically see humour or something good about a situation. But at other times I really have to try to find that rainbow, the same as anyone else.

I have certain beliefs on the whole matter; I honestly truly think that my attempts to stay focused on the good things present in my life helped me get as far as I did.
My theory of how I survived is that I was so desperate to live it gave me the drive to overcome the impossible. Now I know all to well that isn’t always enough, I have seen many extremely determined people loose their battle, but my point is without that drive I think you stand much less of a chance at triumphing against the odds. It is damn hard work at times. I cried, I sulked, I pouted, just like anyone else would when facing adversity. But after a good toys-out-of-the-pram style tantrum, I would try and find something to focus on that was positive. It’s hard to find sometimes, one time as blogged here, it was A who had to point out to me surely there was a key positive point I was missing and that was “I’m still here”.

One of the best tips I was given was from a friend who is now 3 years post transplant, and he said he would look in the mirror and smile and laugh. On my darkest days I would go to the mirror face it and pull a large (fake) grin. I would also stare myself straight in the eye and say “I will do this. I will get my transplant”. I did this at the times when what I actually believed was that I would never get there, almost as an attempt to talk myself out of those feelings I suppose.

The reason I desperately searched for positives to clutch on to is I believe if you stop finding things to love about life, surely you will lose the drive and forget what you are fighting for? It’s easier to fight for something you are clinging on to than to fight for something unattainable, predominantly because we don’t know what is round the corner but we know what we have today. For those who are still waiting, don’t lose that spark, that passion for life, it may be tough and it may be vastly restricted but whilst you are alive you are living and there is hope, no matter how dark it gets.

My motto is “this is my life and I choose to love it” for a reason – I had decided that no matter what happens, transplant or no transplant, I was going to enjoy my life as much as I could because I couldn’t change the hand I was dealt and you only get one chance therefore best to make the most of it.

I hope this late night ramble makes some sense (it’s a tad disjointed and waffley, sorry about that) and that no one takes it personally, it isn’t a slight on anyone else’s behaviour or opinions, merely my attempt to shine light on how my little brain works (or attempts to work).

Happy Easter everyone! My second blood tests at Harefield were fine (yay) and I got my phone back (bigger yay). I hope you have all had a lovely weekend, my favourite moment was the traditional Easter egg hunt, in which my grandma hides little Easter eggs for us “children” to go and find (a tradition I will never grow out of). Last year mine were all hidden on the patio to ensure that with my mums carrying the oxygen I could slowly make my way round and find them all myself. This year however they were hidden all over the garden…just like everyone else’s.

By the end of January I was pretty much fully awake and aware of my surroundings…and it was tough. Extremely tough. I found myself in the unenviable situation of not only not being able to breathe (I was still on the ventilator just via a tracheotomy now) but now I was unable to talk or move, in fact unable to do anything myself. At first my mind was still strong and determined, I remember asking to go for a walk very early on and my poor physio had to try and gently suggest attempting to sit up might be a better place to start without crushing my hopes. I have the patience of a shrew therefore would try and do things – such as tuck my hair behind my ear – myself and inevitably get extremely frustrated when I found I couldn’t even lift my arm and reach my own head. I would envisage doing things with ease, but then on attempt be surprised to discover it was near impossible to do on my own; my first try at sitting up on my own took two physios and a nurse to manoeuvre me into an upright position (I had lost my sense of balance from being flat on my back for so long) and I managed to hold my head up for 30 seconds before feeling myself slump slowly sideways back towards the solid reliability of the bed.

This inability to do anything (which was caused by the abnormally long time I was sedated so anyone waiting for transplant please don’t focus on this) made the days drag excruciatingly, and I would watch the second hand move round and round the clock. ICU have extremely strict visiting hours so I would wait for 10 o clock to come, and then focus on the door, waiting for the shadow of my mother to appear behind the frosted glass. I am a very tactile person, and took great pleasure in having my feet washed or cream rubbed into them, and having my face wiped with a cold cloth. The only ways of communication I had were to mouth things, or more commonly resort to a weak and spider-like scribble to express my needs. During much of this time, I tried to rely on my imagination and memory to take me away from the room with 15 different machines, monitors and drips, all bleeping intermittently in a discordant and jarring fashion.

It was around this time that we decided I should open my suitcase which had been packed for 2 years, as I may need the contents, only to discover the most inappropriate packing Harefield has probably ever seen. In case you cannot make it out in the photo, the contents include an eye mask, pink fluffy jewellery box, fairy lights and a cuddly lion, all essentials to one’s recovery in intensive care. I had been intelligent enough to pack pyjamas, and these were ones I had purchased specially and placed in the case knowing I would either wear them with new lungs, or not at all. Due to complete uselessness of said case, my mum was sent off to the local shops to purchase such items as a toothbrush, toothpaste, body wash and shampoo.

Things continued to improve health-wise in a very slow, two steps forward and one step back fashion. I was continuously told “you’re doing so well!” which didn’t help when I felt anything but well, and in some of those early days I had urges to bite some of the cheeriest nurses and staple things to their head. Each day something would go a bit awry. With a potassium level dropping, or a blood pressure reading jumping, resulting in an endless and constant juggling of medications and treatments. Because I had been ventilated for so long it was no longer possible to just switch off the support and have me breathe unaided as my muscles had wasted too much. Instead, the ventilator was being weaned, slowly in order to build up my tolerance to less support day by day, and consequently each day felt like a work-out as my lungs struggled to adapt and attain the new higher level of effort required.

Monday 29th was quite a monumental day as I stood for the first time. Not unaided – it was using a device called a tilt table, which eerily reminded me a little of a coffin. They slid me onto the board-like base from my bed, strapped me to it, and then raised the sides and the footplate before slowly tilting me, allowing me to get used to the new position before tilting me a bit more, until I was in an upright position. The original aim was 2 minutes, I refused to come off it and stood for 7. It was oddly unnerving being upright but I loved it, as it was just different from my usual flat on my back position, and made the room seem different too. Later on that day I was put back on dialysis as my limbs were still very puffy, and a tablet which caused my heart rate to drop to low levels we had never before seen. I was still having problems absorbing and was being constantly sick – a side affect from the Tazocin which they stopped in an attempt to get some nutrients into me.

On Thursday 1st Feb, my mum was sitting nattering away by my bedside when the ventilator started alarming. Suddenly everyone came running and I found the breaths coming in weird short bursts. They were moving very fast, but seemed very calm as they explained to me the ventilator had broken and they were getting another one. A nurse looked me steadily in the eye and talked me through everything, as he placed what looked like a large green balloon on the end of my trachy and told me to breathe calmly and slowly. I was scared that my lungs might not cope, but at the same time was enjoying the freedom of breathing unaided, and decided to try and focus on it as a good training exercise rather than a panicky problem. The new ventilator was in place in minutes, and I was reattached. Rather than causing new panic, that episode actually gave me a tiny burst of confidence; the machine had failed me but I had breathed unaided, my sats hadn’t dropped, and there were no ill affects. Sometimes you need a push to believe that you can.

Thank you for your kind responses following my babble on Tuesday, it is a wonderful motivator to keep pushing and campaigning knowing there are people behind you. My appointment at Harefield today went well, although one of my blood results was a bit wonky meaning we have to trek back up there tomorrow morning for repeat tests. Still it is gorgeous and sunny, and it is a pretty drive, and sunshine can’t fail to make you smile. Anyway! Let me finish the slight cliff-hanger I left you on…

Friday 19th January, my wonderful cheering squad crept cautiously into Intensive care. I was still there, still hanging on, and even better than that showing the first sign in days that I might be getting on top of things – my temperature and heart rate had both dropped. Due to me being septic, the staff were extremely cautious about giving my family false hope and would only confirm that they were cautiously optimistic but that I had an awful lot of fighting to do. I was started on haemoglobin and blood transfusions to help me fight and over the next 24 hours my readings continued to stabilize.

By Saturday lunchtime my family were feeling a lot more optimistic and decided to go out for a celebratory meal. Clearly I was most disgruntled at not receiving an invite because just as their gorgeous hot dishes arrived, my mother received a phone call saying they needed to return to Harefield straight away. Apparently not satisfied with all the medical chaos I had displayed so far, I had decided to embark on a new tact and developed a blood clot in my leg. A specialist surgeon was being rushed over from Watford and my mum got back to be greeted by the consent forms for an operation that if it didn’t succeed, would result in the amputation of my left leg. Kind of me to create a new type of worry for them I suppose, rather than play the same “I have dodgey lungs” card over and over again.

The operation involved a little umberella type mechanism being inserted into the vein (lack of medical knowledge showing through here) and luckily was a success. As one surgeon so amusingly put it “we would be reluctant to remove the leg as it would hamper her recovery somewhat”. Despite this small setback, I continued to show signs of improvement, with the infection markers in my blood dropping daily. It was discovered around now that I wasn’t absorbing properly, which meant I wasn’t getting the nutrients so vital to my recovery. I was also still being sick when they gave me the IV I was allergic to which I suspect wasn’t helping matters very much.

That weekend I got my first visit from Richard (as in and Judy) although I was well sedated and unaware of the excitement his presence on the ward caused. As my progress continued on it’s very slow but upwards track, my family started to read out some of the many cards that had already winged their way in my direction. I was sedated but would respond by smiling or moving slightly.

I had by this stage developed something called organising pneumonia (wonderful name, it made me smile every time I heard it) where repeated high temperatures and infection causes the body to get a bit cross and it starts depositing debris in the lungs which consolidates and shows up as scary white patches on the X-ray. This was however treatable and I was immediately started on high dose steroids to prevent permanent scarring.

On Tuesday 23rd January, they inserted a tracheotomy and my sedation was switched off. One of my first attempts at communication was to ask for the Vac pump - which continuously squeezed and sucked round my ribcage to extract infection from the wound – to be taken off (I did not succeed and the vac pump stayed in place for many weeks to come). Over the next few days I continued to come round more fully and became more communicative with it. The surgeons came round to see how I was doing and I politely informed them they had one week in order to get me off the trachy. Slightly stumped by this dictation of management the main surgeon attempted to gently explain that it may take a little longer than 7 days.

As I became increasingly more awake, the gradual realisation of exactly how ill I had just been began to sink in. I found myself unable to move; I couldn’t lift my own head, pull my legs up or raise my arm, as I had lost so much muscle strength. I couldn’t talk or eat due to the tracheotomy and ventilator and discovering that I was no longer in control of any of my body was a frightening experience. I asked my mum and A how close I had come to dying, but they brushed over it slightly, concerned for my mental welfare at this delicate stage. Whilst the initial danger zone I had fallen into was now coming to an end, newly awake and aware of my surroundings, the journey was only just beginning.

A small break in the story here to return to my usual rambling as I need an outlet tonight. Lisa, a friend of mine waiting for transplant is having a very rough time. She has a nasty infection and is currently on a ventilator (she was the other CF girl on Watchdog).

The frustration is unbearable. I am so lucky, I have had my life saved by that gift of life and now face a possible future full of quality and experience, possibilities and opportunities and yet 50% people who are in exactly the same position as I was will never ever get this chance. I campaign as hard as I can but I can’t reach everyone and tell them all what a miracle organ donation is. She deserves this transplant, everyone waiting deserves it, it just doesn’t make sense. Tonight I am writing to two very wonderful women, both mothers of people with CF who never got the chance of a transplant and yet still sent me wonderful messages of support and congratulations when I received mine. Some people in this world are so big and so full of dignity and courage it makes me feel very small indeed.

When thinking of friends waiting, or friends I have lost who never got the chance, the self-centred part of me is filled with a quietly despairing “why did I get the chance and not them” which is silly as there is no rhyme or reason, just chance and luck and then we must make the most of what we are handed. I almost feel guilty.

All I can do I think is make sure I appreciate the hand I have been dealt and take every opportunity offered. I have been given a truly wonderful gift, and I am determined to make every minute count, for me, for my family, for all those waiting, those who have lost their battle and most importantly, for my donor. Please keep Lisa and all those waiting in your thoughts tonight. Thank you.

www.livelifethengivelife.co.uk
www.uktransplant.org

During my time sedated I had weird and wonderful hallucinations. Bizarrely I hallucinated about my own recovery; I thought my whole family took me outside in a wheelchair and that I was walking around (albeit unsteadily) unaided. These hallucinations of an advanced recovery made it all the more frustrating when I re-entered the real world and found myself unable to move let alone get up and walk. I also had a few scarier hallucinations including those of fellow patients dying and thinking that there had been a shooting within the hospital and that I was in danger from a similar attack.

24 hours after I had been put back on the ventilator, I spiked a temperature. The doctors warned my family that this could be the first signs of infection, but all anyone could do was sit, wait and see. I was also quite puffy due to excess fluid gathering on my ankles and wrists, so they decided to “dry me out” lessening my fluid input which sent my heart rate through the roof. As it became obvious the ventilation may be a long term thing, discussions started about inserting a tracheotomy; a tube directly into my windpipe that would give me back my mouth and allow me to be brought round whilst still being ventilated (my frustration was evident at being unable to communicate in my current state).

During this time I continued in my now notorious trait of being almost impossible to fully sedate. I was highly reactive, in particular to my mums voice (much to her delight) and vexed the nurses endlessly by shifting around in the bed entangling myself inextricably in various tubes and wires. My sister and mum were sitting by my bedside chatting one day, when I motioned for a piece of paper to write something down. Having apparently been unimpressed with someone on the medical team I scrawled “no one likes a butt-munch” much to everyone’s incredulity and amusement.

Over the next few days the infection markers in my blood continued to rise, as did my temperature. Blood gas tests became increasingly poorer and by the Wednesday I was too ill for a tracheotomy to be inserted. The doctors were trying everything and becoming increasingly concerned, telling my family “we are doing everything we can” but emphasising the fragility of my state.

My mum calls the Thursday “Black Thursday” as by this point things looked pretty bleak. My infection markers were through the roof, my temp over 40, my heart rate was 170 and despite being on full ventilation my oxygen saturations had dropped to 82%. I was struggling on but it became clear I was loosing the battle. The doctors sat with their heads in their hands, going over and over all possible routes of treatment. I was on a bucket load of intravenous antibiotics but none were having any affect. Finally they came back to my family and asked what reaction I had to an antibiotic I was listed as allergic to, effectively saying would it kill me if they gave it to me as they were running out of treatments to try. They decided on this tact, and also put me on dialysis as my kidneys were showing signs of shutting down and it was a frantic attempt to cool my temperature. Later that afternoon a dressing change revealed that the wound was full of infection. They reopened it there and then, putting in place a vacuum pump that would continuously draw any infected fluid out of the opening. At the end of the day, my family retired to the residential flats onsite knowing that the next 24 hours were critical, and that the doctors had gone home that night holding their breath.

Thank you for your kind messages about GMTV this morning, I will try to somehow get a copy of it online for those of you who have been repremanding me for the lack of advanced notice!

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.

A typical Thursday afternoon. It was fairly nothing weather, not raining but not sunny. I had managed to haul myself out of bed and away from the computer in time for my friend’s arrival. We sat and chatted, watched rubbish on TV and she cooked lunch whilst I rested. Whilst discussing the politics and moral dilemmas featured in the highly thrilling daytime soap doctors, we were rudely interrupted by my phone going. Dutifully my friend lept up to retrieve said phone and raced it to me. My heart skipped a beat, Harefield’s number was flashing up. “Hello Emily? Where about are you?” I confirmed I was at home and with someone, whilst inside desperately wanting to demand to know what she wanted. “We may have some organs for you.”

In true Emily style I promptly burst into tears and was able to say anything vaguely useful or coherent to a)the somewhat confused coordinator and b)my increasingly alarmed friend. I managed to babble that I would leave as soon as possible and hung up, wailing instructions at my friend to phone A at work and tell him Harefield had rung. I phoned my mother, who panicked and turned to my sister asking if she should drive. Bewildered my sister confirmed this would indeed be a sensible thing to do right now and they set off in the direction of my house.

I had regained some calm at this point and an excited energy was filling me. My friend and I raced round the flat (as fast as tubing and lungs would allow) gathering together essentials, filling the oxygen cylinder and putting them by the door. As we paused for breath the phone rang again. The minute I saw Harefield’s number I knew it was bad news, they don’t ring twice. The coordinator confirmed my suspicions the minute I picked up; the donor family had changed their mind and withdrawn consent. The wall I was staring at became blurry as I swallowed hard and tried to accept this news like an adult but I was absolutely devastated, this chance had been taken away before it even began. I mustered up a few words of thanks to the coordinator and sat down in tears. At that moment my mother arrived, so I quickly explained the bad news through my now somewhat noisy sobs. She was brilliant as always, took it all in her stride and whilst hugging me tightly gently reminded me that somewhere someone was going through the greatest torture imaginable having just lost their loved one. Once I had calmed down we phoned Harefield back just to go over what had just happened. I asked if there was any chance the family might change their mind again and the coordinator said it was highly unlikely, and anyway the retrieval team only had until 5 to get the lungs.

As we sat in a daze, reflecting on what had just happened, my dad and Abby arrived and A confirmed he was leaving work anyway and would be home shortly. Frustration building, I disappeared into my pink sanctuary (also known as the bedroom, A really is a patient man allowing me to pick the paint colours) and sat and blogged my vexations. Having done so and feeling slightly better I rejoined my family in the lounge, where my mother suggested we go shopping as we now had a full cylinder of oxygen plus wheelchair just waiting to be used. I voted against the suggestion because it was still only 4pm and I couldn’t bear to leave the house till after 5; even though the coordinator had said there was virtually no chance I just felt it would be tempting fate.

At approximately 4.30pm the phone rang again. “Emily are you sitting down”. Untruthfully I said I was even though the minute I had seen the number on the screen I had leapt onto my feet and started pacing around by the fireplace. “The family have changed their mind, the retrieval is going ahead and we need you to get here as soon as possible”. This time I was calmer and managed to finish the conversation in a normal manner before heading straight for the door.

As we drove down the motorway I began to feel waves of anxiety rising, the adrenalin causing my heart to thump wildly and my oxygen was as high as I dared have it without risk of it running out before we got there. I demanded my mum and Lucy talk about something to try and distract me so inexplicably a long debate about past holidays – where we had been and what year – started, and we relayed fond memories of frolicking on the beach under blue skies and sunshine. We reached Harefield in good time and quickly settled on the ward, joined by my dad Abby and A some minutes later. Back on high flow oxygen with no danger of it running out I was much calmer and we sat and chatted whilst bloods and temperature were taken. I showered in surgical scrub (which was pink woohoo!) and donned a highly attractive pair of paper knickers and a hospital gown. On return to the room I was greeted by the surgeon who was reading my results. He explained my temperature and white cell count were both slightly elevated so he was waiting for my CRP (inflammation markers) result to come back before deciding if I was well enough for the operation. The minutes dragged on, we all sat and attempted to chat normally but I am fairly sure everyone’s attention was focused towards the door. The surgeon returned confirming I had a CRP of 16. This was a stonkingly low result for me (they were dancing around 100 the last time I got a call) which I explained pleadingly. After a few minutes contemplation he spoke “I think we should go ahead”. Suddenly I realised what he meant, the organs had been checked, they were ok, this was actually going to happen.

I had half an hour to prepare myself before going down to theatre and spent the time with my mobile glued to my hand, phoning a few people, speaking to various relatives, and texting one or two others. Wrist bands were attached, rings removed and consent papers brought in to be signed. I also realised at this point I had never legally verified my will, so scribbled down my parents as executors and got two nurses to counter sign it as witnesses. In what seemed like no time at all the trolley appeared at the door and I was on my way to theatre. I parted from my family with as purposefully loud and confident “see you later” as I could muster, before I was taken through the double doors and into the operating theatre.

To be continued.

With the novelty of no oxygen constraints still being fresh A and I have been out and about more in the last week than we probably managed in the whole of December. Nothing flashy, just leaving the house, going for a meal, going into town, it’s all so exciting and a privilege to have such freedom to do so without watching the hand of the oxygen dial moving towards empty.

Yesterday we went up to Bristol as there was a concert A really wanted to see and I think of Bristol as a second home since I spent some of the happiest years of my life as a uni student there. We met up with the man who is ultimately responsible for me being here today, that is the head CF consultant at Bristol Royal Infirmary. It was fantastic to see him and to be able to show him this wonderful new transformation. I will never forget the day he wandered into my room on the ward where I had been for a couple of weeks, sat quietly for a bit and then asked me if anyone had ever mentioned transplantation before. Naively I said yes I was aware some people needed it when their CF got really bad, and very little else was said on the subject. It was only once he’d gone it dawned on me it might be in reference to my own health and I was stunned. The problem is I still felt “normal” as you learn to adapt and work with what lung function you have, but early referral is vital as was proved to me as I went on to wait nearly 2 years for my lungs. He was responsible for getting me referred and for keeping me as well as possible whilst I finished uni (which nothing, neither oxygen nor wheelchairs nor indeed collapsed lungs and chest drains was going to prevent me from doing).

We relayed the full story of the huge rollercoaster to him (I will be doing the same on my blog over the coming month) and chatted about all things transplant related. He said to have survived what I did there must be some reason and I think he’s right. I also know full well where my energies will next be invested, I have some serious campaigning to do on the issue of surgeons and how they are “measured”. At present if you try to look up the surgeon who did my transplant, one of the first things that will appear is the death rate.

I feel this is an extremely unfair way of measuring someone’s competency when the cases they are working on are ones like mine; highly complex and very high risk. Consequently I did nearly die, but surely the main focus should be that without a transplant I didn’t even have a chance and would certainly have died, making the operation the only option. The day my mum calls Black Thursday, when they finally said to my parents there was nothing they could do, the surgeon apologised to my mum and she said to him she never wanted to hear an apology again as whatever happened from then on, they had given me a chance and my family would remain indebted to them for that. It is far more long and complex than that but I have a lot of research to do and then I will pursue this matter as far as I can. I could have easily been turned away that night but they took a risk, and it paid off, I want to do everything I can to make sure that for people in the same position as me who want to take that chance they have the opportunity to do so.

Due to no longer being able to cause spectacular commotion health wise, I apparently decided to create a disturbance by dropping my phone on the street in Bristol. Someone has found it and was thoughtful enough to ring the number labelled "home" so we know it's been retrieved, but as yet I have not being reunited with it, which is why I appear to be ignoring you if you've rung/texted.

Trekked up to harefield again yesterday, they start you off with clinic appointments twice a week (keeping a close eye on everything which is highly reassuring) and then reduce it slowly as time goes on. I received another glowing report, and this time as opposed to being described as resembling a dogs dinner (yes that is the medical term they used) which was a consequence of the massive pneumonia I picked up after transplant, yesterday the CT scan was described as “bloody fantastic” (a medical term I am keen to hear more of). I took the opportunity to go back to intensive care and visit the wonderful staff who cared for me for 7 long weeks. It is so therapeutic to be able to walk in and stand and chat when you spent so long flat on your back, attached to a ventilator and unable to move – that makes ICU seem a much more frightening and sinister place whereas revisiting helps me modify my memories and put it all into context. I also met and was thanked by one of the top bods at Harefield for the Comedy benefit – we raised a fantastic £20 000 and I have watched the show as it was recorded for me and it was just brilliant, I am so proud and so grateful to everyone who continued to work on it whilst I was off wreaking havoc in a semi conscious state.

On the way home from harefield, I was going over memories of the last few months in my head. You don’t realise how ill you are or how hard things are until you experience a difference, and thinking back to my puffy days, where I could literally neither move nor talk and only just had the energy to breathe, I cant believe how lucky I now am. My lung function is currently just under 50% (expected to rise over time) so with it being at 19% previously, the difference is indescribable. On Christmas day, I was so out of puff I didn’t feel well enough to open my presents, little did I know just 2 weeks later a whole new chapter of my life would be beginning. It just goes to show no matter how hard things get, whilst you are alive you are still living and there is always hope.

For those who have been getting in touch and not hearing much back, big apologies for being lax on the email/text front; I am still readjusting to being home and to this strange but brilliant new world so am being a tad uncommunicative at the moment, rest assured I will be chattering your ears off sometime in the very near future!

Thought I should do as instructed and point people towards the following comment left on my blog:

chris said...

Congratulations, You've been nominated in the Politics category for the Ask.com/Metro 'Best of Brit Blog Awards'. Please show your support by posting our link http://tinyurl.com/2wpzl6 on your site to encourage your readers to nominate their favourite blog - but hurry there's only two days left! Please see below for further information on the awards. Thanks again for your support

Best Wishes,

The Best of Brit Blog Awards team
0207 908 6488

yay!

I am the most smiley lucky girl in the world. Today was a fabulous day, here are some of the highlights:

I had a bath. No oxygen mask whacked up to 8 litres, no panting as my body attempts to get used to the hot water, no gasping as I had my hair washed, just a hot bubbly relaxing bath.

I did some washing up instead of lying on the sofa whist A made breakfast.

Whilst at my parents I went upstairs to chat to my dad instead of him having to come down to me.

I made my mum a cup of tea when she got in from work.

It's funny how it's the little things which are quickly becoming the most treasured, today I finally started to realise that actually, this is my new life now, by doing something like having a bath I wont then be laid up for the rest of the day my lungs screaming in fury. I went shopping today too (big yay) although after a fairly substantial walking attempt did give up and use the wheelchair as my legs are still pretty rubbery and there was muchly purchasing to be done. We stayed in town for four hours and lunched out, so wonderful not to have the constant constraint of Oxygen cylinders running out forcing me to return home after two hours.

I had my first outpatients appointment yesterday (didn't even take my wheelchair, what a feeling) and got a glowing report, everything was heading in the right direction and the doctor was really pleased. I am still in the very early days so I know that further complications are likely, but I am just focusing on this wonderful feeling of just being alive and able to breathe which I am lucky enough to have right now. Can I at this point say a huge thank you to everyone who donated money to the fund that Emmie so kindly set up for me, I am a bit overwhelmed by the generosity and promise I will update with what it enables me to do.

My birthday on Sunday was wonderful, surrounded by my family and friends who haven't seen me tubeless for 2 years. It was exhausting but fantastic, the best part: blowing out the candles on my cake.

ps - Hotmail kindly terminated both my email accounts whilst I was playing around with ventilators and the like, so I won't have received any mail sent in the last few months. I have now reopened both but of course lost all my addresses so please get back in touch everyone!

Not sure how to start this entry, I tried several beginnings but even YAY doesn’t seem to suffice. In case it’s not obvious it’s me writing my first entry in a brand new chapter in my life. I wrote the following about a week ago:

So it’s happened. I have, as my dad says, gone through the looking glass and am now in a strange new world. to be honest its all still a total daze and the reality hasn’t sunk in yet; I have had my transplant, I am alive….and I can breathe. Of course its still very early days yet but I can breathe. A friend came to visit today and said how different I sound, no heavy breathing or pausing for breath in the middle of sentences. It hasn’t been smooth, the opposite in fact and I am still very weak from the op not to mention the huge infection I managed to aquire just after (never been one to do things in a straightforward well behaved manner). Sadly I am possibly the most impatient person in the history of mankind so not being a spectacular patient, but someone gave me the gift of life and I am determined to get strong and make the most of it.

I am keeping this entry short as my fingers are still all rubbery and lame from being sedated for so long so typing is taking me a while (not to mention a big day today as some of you already mentioned, a birthday I wasn't sure I would see).

Lastly thank you all so much for your wishes and thoughts, thanks doesn’t do justice to my gratitude but rest assured when it gets really tough it’s people that keep me going. Love and sparkles to all.

Just to add a small 'Part II' to yesterday's post, Emily and I had a lovely walk today outside in the sunshine... see the pics below for one very proud face, not to mention the pinkest dressing gown Harefield has ever seen. It was lovely to be out in the sun and have some normality, and she did some fabulous walking. We ended the day by having our first meal 'out' in the hospital cafeteria across the way. Tomorrow we plan to have lunch out again, and perhaps tackle some stairs! Bring it on. Thanks all for the lovely messages.

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.

I said in the last post that any developments would be posted a.s.a.p, and you'll be pleased to know that there have been several in the last week! Since the last post, Emily has had a speaking valve fitted, so has been talking lots, and she has been able to eat (with the trachae still in)... consuming everything she can, from pasta to soup to scrambled eggs!

She also had the wonderful experience of going outside for the first time in six weeks, wrapped in a blanket of course. It has just been wonderful to have Em feeling herself again... I saw her yesterday when she was taking part in some physio (something she says is the highlight of her day). This strenuous 'training' involved some spectacular line dancing! I can't describe the feeling of seeing the first real beaming smile on her face since the operation, and I'm just so happy it's all become real to her.

Today was the biggest step; Emily was moved on to E ward, the regular ward for post-transplant recovery. For myself, Abby and our parents, being in and out of the ITU for seven weeks has been a surreal experience... very serious for obvious reasons, but also very uplifting. It is amazing to see the doctors and nurses dedicating everything to their patients, and the positive and professional approach of Em's transplant team and physios has been truly inspirational. It is very exciting to have Em on E ward, especially as now the whole family can cram in and sit together, which hasn't happened for quite a while. Thanks again for your continuing support, Em sends her love and will be instructing me when and what to update until she has access to it herself.

P.s. This is Lucy... sorry Emmie I didn't realise you had just posted too! I would also like to thank everyone who got a ticket for LFL... it's going to be a once in a lifetime evening, and I'm very happy that it's going to be everything Emily imagined. Enjoy the show!

Hi everyone, it's Emmie here! I thought I'd give everyone a little update on a big project that Emily and I started work on 6 months ago and which is now finally almost complete!

As some of you may know, last summer Emily was in hospital for several months and during that time she was contacted by the legend that is Bill Bailey, who phoned her up for a chat and ended up being on the phone for an hour (I wonder if he actually got a word in edgeways?!)

Anyway, Bill Bailey was so touched by Emily's situation and personality that he offered to do whatever he could to support the Live Life Then Give Life Campaign (which Emily and I founded last year). Well with an offer like that, organising a charity comedy night was the obvious option!

In the midst of all the preparations however, Emily decided it was a good time to invest in a new pair of puffers (she had heard they were this seasons' latest accesory...) and left me staring down the barrel of a gun with 6 weeks to pull together the entire show (thanks Em!) Not that I would have changed anything for a minute as I am just so happy that Emily has finally got the chance she has been waiting so long for and I'd organise 15 shows if it meant she could have this opportunity.

Thankfully in Em's absence I have had some wonderful helpers in the shape of our mutual friend Oli Lewington, my husband Brad and a variety of others and I'm delighted to say it's NEARLY READY!!! Laughter for Life! takes place on March 4th 2006 and all information can be found HERE

We were astounded when tickets sold out in just 2 weeks and are delighted that we will have a full house on the night. Apologies to those of you who haven't had a chance to get tickets, but if you would still like to show your support for a venture that Emily has put a HUGE amount of work into, then please visit our Justgiving Page where you can make a donation. All funds raised will go to the Cystic Fibrosis Trust to be used for the specific purpose of improving organ transplant services in the UK - thereby giving more people the second chance in life that Emily has received.

Well that's it from me folks. I'll leave Emily's family to continue with the updates but from what I've heard it's all good positive progress still!

Hi, Lucy again.

Em has been doing really well this week, now she can communicate (by mouthing words) and knows exactly where she stands with her recovery. The team agree it's still a lengthy process, but they're delighted with the way Emily has continued making steady progress everyday. I must correct at this point the bizarre rumour that Emily has walked for ten minutes... i'm not sure whose rumour mill that originated from, but it wasn't ours! She has done some fantastic short walks across the room, usually a couple of goes at a time (with the help of a trolley and a physio) but as she's still hooked up to every contraption available, she's fairly restricted, and still very much getting used to the situation.

After the complexities of her initial recovery period, she is quite weak and has to begin using her muscles again slowly. Em is very smiley and eager to hear about things going on outside the hospital, and has shown a new-found love for cookery shows to entertain her... we all expect a gourmet meal the minute she's feeling better! Her physios and doctors have had nothing but glowing reports for the last few days, and are hopeful about engaging in the various steps to get her onto the regular ward from ITU, this week if things go as well as they can. Please dont expect to hear of any aerobics or kickboxing quite yet, but the main thing is lovely Em is firmly back on the road to recovery, and determined to do everything she can to help it along. Thanks again for all the positive wishes, we're a very lucky family to have so much support from all around. More updates will be added as soon as any major changes come along.