Cabaret favourites....



....was awesome.

More on that to come, but I may not get a chance before I go on HOLIDAY!!

Yes that's right, my first proper summer holiday since 2002! I can't believe I'm actually going (won't believe it till I am lying on the beach, smothered in factor 50) but so totally over excited I cannot wait.

So if you don't hear from me for two weeks, take that as a good sign....

Life is truly flying again, and I am loving it!

Last week myself, Oli and some rather fabulous LLTGL helpers held a talk at the Treasury in Whitehall. It was a fantastic event, organised by their disability committee. We scooted up to London, with me saying “I’ll be a lot calmer when we’re at the station/on the train/at Whitehall/in the main room" at various intervals, each statement proving to be an utter lie.

I spoke first, about LLTGL, Transplantation, the statistics and the fears of waiting, and then introduced our guest speaker C, who bravely agreed to come along to tell the assembled what it was like watching your father wait and hope for a new heart. The audience was silent as she explained beautifully that the wait for transplant is like a washing machine – most people would say rollercoaster but that implies ups then downs whereas with a washing machine you are pelted with all these emotions at once (trademarked by C, Oli and I shall now be begging to steal said description). As she reached the end of her talk, the emotion of it all surfaced and she broke down, and I moved up to the mic to finish her speech whilst giving her a gentle squeeze.

I cannot even begin to explain how much more of an impact it has coming from someone who is living the situation right here, right now and we cannot thank C enough for being bold enough to stand up there and pour out her heart to a visually moved audience. The whole afternoon was just fantastic and we will hopefully have several more events stemming from it so watch this space...

One thing down, one very exciting thing to go: Cabaret Favourites is a mere two days away and I am now officially petrified! We had a full rehearsal on Saturday and the amount of talent we have in this cast is just incredible. Wednesday should be a fantastic evening; I am starting to get really rather panicky about singing on stage myself (not a good start when encouraging others to do so!) I keep having this fear I am going to cough in the middle and then remembering my new lungs don’t tend to do that...we will hopefully have some pictures which I can post after the big day.

Things have been so busy that I keep forgetting that a week today I shall be sunning myself (well sitting nicely in the shade smeared in factor 50) in much sunnier parts! I am going on my first proper summer holiday...2 weeks in gorgeous Greece. We are returning to a place we often went to as a family when I was younger, so I cannot wait to go back. When I had my tension pneumothorax and they were trying to stabilise me enough to move me to the Brompton, I apparently asked my dad to talk about our little haunt in Greece and describe it to me to keep me calm. I am so lucky to be able to go back, and I can’t wait to see what it is like now, this time with precious new working lungs.

Thank you as always for your wonderful comments and emails which always a) help me with my perspective and b) are just so lovely to read.

I went to Harefield on Thursday to see what was going on. All in all the appointment went well. Oxygen saturations were 100% (as the nurse said, can't get much better than that!) Lung function fantastic (tiny drop but not big enough to be of any relevance) Blood pressure etc all normal, X-ray was described as "pristine" (woohoo!)

Of course I can't leave a hospital without something being a slight cause for concern and it appears the latest organs to need an ASBO are my kidneys. They have been messing around intermittently and so the docs looked at the general trend over the year, which is essentially showing a slow decrease in function.

This sounded rather alarming to me but my consultant was fab, explaining carefully that it isn't any reason to panic at the moment, but does require further investigation to try and ascertain just what is causing their decline. The number one suspect is Cyclosporin, one of my immunosuppressants. In fact they are 99.9% sure this is the culprit, but as Dr C said, the one time you assume that's the reason is the time that actually it's a more concealed cause.

So I have all sorts of fun tests booked for August (a day out for me and my kidneys if you will) to triple check everything else and check that the big bad bully is indeed my Cyclosporin.

Progression if it is the Cylco? We can switch me to a different immuno which I don’t really like the sound of as it’s much newer (thus less known about it) and my lungs have been so very good (not a mention of the R word in sight) and as they say if it ain’t broke don’t fix it...but then I might not have a choice.

Anyway as my sisters pointed out, nice of me to pick a different organ to muck around with for a little while. They always have had an amusing way of looking at things...

Firstly massive apologies for not updating on the blood test thing - Kidneys are doing ok, the 2nd blood test showed a slight improvement so they are not too worried, although I will be returning to good ol' Harefield probably on Thursday.

It has been a tough week as I have had to realise a few things.

* Recovery from the actual Transplant is not the end. There's a myriad of other little elements which still need TLC along the way which will spring up when you least expect them.

* Working full time is a bit too much right now.

It’s been very hard for me to accept both of those points and therefore I have made the last week a little tougher for myself than it probably needed to be. I’m not very good at giving in or being defeated, I’m not very good at letting people down, and even though if I stopped and looked at it with an outsiders perspective the only person I am a) giving in to and b) letting down is myself, it’s still very hard.

Still the upside is my lungs are rather fabulous. Whilst I remember, massive congratulations to my middling sister Lucy who recently learned that she is a 1st Class Honours student and will shortly be heading into the world of journalism if her talent is anything to go by.

And how could I finish my blog without a plug for my very own project...some of you may remember a show I produced in 2004 entitled Cabaret Favourites. I loved it (always happiest when immersed in music and drama) but felt a little sad watching as really I wanted to be up there myself. I participated in the final number (by waving my arms around vigorously) but as the lights went to blackout I remember bending over, hands on knees, gasping and trying to regain my breath.

This year I will be debuting my new lungs as my sister has convinced me to get up there and sing a duet with her. I am totally over excited but incredibly nervous. Plus of course there’s a whole host of extremely talented young performers ready to sing their hearts out and create a musical spectacular in aid of Live Life Then Give Life. Want to see it? Come along: 23rd July at 7.30pm, email emily (at) livelifethengivelife.co.uk for more info and/or to book tickets. YAY!

This weekend was unbelivably hectic but incredibly inspiring. On Saturday afternoon, I travelled up to Liverpool (worst journey in the whole world - Virgin didn't give me my ticket, said they would, then proceeded to try and make me buy a new one at every. single. change.) to stay with my old flatmate (she's not old, we were flatmates at uni. You know what I mean.) in preparation for a pretty big day on the Sunday.

The reason for this escapade was to support the Tighe family in their annual Ste Tighe tournament, in memory of their son who was killed in 2006, and who saved the lives of 5 people through the gift of life. The family are incredible, you can see their ITV interview here

The day was fantastic - dozens of 5-aside teams from all over Liverpool joined together in a huge tournament, to raise money for LLTGL. It was fantastically organised and I just can't get over how amazing the Tighe family is. They lost there son only 2 years ago, but they were genuinely touched that we had made the effort to come all the way up...I felt it was the least we could do.

Talking to donor families helps me better understand that little bit more about what goes on on the other side of it all. It's very hard to imagine unless you are in that position, but the more I learn, the more convinced I am that spreading the word and getting people to think about the option of organ donation helps everyone; just seeing the comfort the Tighes now get knowing people are walking around today because of their son reminds me that even that small bit of comfort the gift of life can bring to a donor family is extremely valuable.

I felt very humbled by everything I saw on Sunday. Sometimes tragedy brings out the best in people, and watching scores of people cheering Paula as she stood up to take the mic and thank everyone for their support brought a swell of happiness about human nature and just now great everyone can be. I also got to meet Holly, our rather lovely Advocate who is generally being a little shiny star in amongst hours and hours and hours of dialysis. I will put some piccies up when I get a chance.

This post is sounding rather hippy and hug-a-tree but nevermind. I am happy, inspired and motivated. Off for bloods later this morning, won't get the results for a while I shouldn't think but I shall keep everyone posted.

The other night I was working a bit later than usual and decided to run for the last train. I learned several things from this experience.

1) My lungs are good when I run (yay!)
2) My legs are not.
3) One should not wear ballet pumps when running
4) ballet pumps with big bows on are even sillier.
5) My diaphragm was not good at all.

Well actually, whilst I was running I was fine, I ran, got my train and collapsed on it in a grinning sweaty heap, however later on, my diaphragm decided to demonstrate its lack of appreciation and get very grumpy and painful. This was quite strange, predominantly because as I understood it, my diaphragm is paralysed, so surely it wouldn't be affected during over exertion...? (any medic types feel free to educate me on this). The other bizarre thing was the type of pain bought old memories flooding back. It was a very similar pain to the stuff I had at the beginning of various lung collapses, and it really freaked me out. I don't quite understand why it freaked me out so much though as I knew this wasn't the same. I am fully aware I have new lungs (even I am not that blonde) and that they are much better behaved than their predecessors, but I couldn't shake the fear, and went to bed a bit of a nervous wreck. Needless to say all is fine, but it's funny how a sensation can bring back such strong memories, physically as well as mentally.

Continuing on the topic of health (ooh haven't discussed health stuff for a while!) Harefield rang. Several times in fact (I'm not v easy to get hold of as I listen to messages then, er, forget to reply) and apparently my kidney function isn't looking as great as it could be. As with all new areas post-transplant it's always a tad nervewracking to hear something isn't quite right, but hopefully it was a dud result or it just needs some medication tweaking or something. Either way, I'm off for more bloods next week to get it checked thoroughly. Come on little kidneys, cheer each other on, get each other hyped up into over-enthusiasm mode.

Other life stuff? Peachy thanks. Yay!

I can't believe I haven't posted in almost a month! That is pretty shocking. I tend to post of course when there's something to post about; I wouldn't want to write for the sake of it.

It occurred to me the other day, I have an awful lot of material I have written for a book (some of it from this blog) which I am currently doing nothing with so I might post a few bits of that...

My youngest sister turned 18 at the beginning of the week. Thanks to me being rather poorly she grew up a little quicker than perhaps she should, but it still feels weird that she is now a real grown-up (well as grown-up as turning 18 actually makes you.)

Work is going well; I think I am still struggling to adjust to the fact that I'm not immediately perfect at this. Thinking about it logically I think it's because I haven't challenged myself properly since Uni. When I was ill I always ensured I kept myself busy but of course they were doing things I was naturally good at (talking about myself) so it came easily. I got told at work the other day "you are the smiliest person I've ever seen!" which I took as a huge compliment! It reminded me of one of my old favourite quotes: "Of all the things you wear, your expression is the most important" which I used to remember whenever I felt down about looking so poorly. Anyway I can't help smiling. It's genetic.

The Breathing Life Awards were held last Thursday and looked amazing from the clips I have seen on the net (which can be seen here). It's a very glitzy night organised by the CF Trust to recognise people with CF's achievements; everything from getting through the toughest times to academic and sporting achievement. The emotion there on the night is incredible; I was lucky enough to win an award in 2005 and it really was a night to remember, so massive congrats to everyone who went and was nominated this year.

I hope everyone else is out and about living and enjoying life, and making the most of this weekend's beautiful weather so far this weekend! Long may it last...

I knew I did the right thing blogging about my mental block re homeworking; thank you all so much for your comments and emails and so many of you raised points I must admit I didn’t consider (like the trust element). I will most definitely look upon this as a positive progression and am now in a much more sensible mindset about it all. So thank you.

I did another talk on Monday evening, this time to some local Guiders. I really enjoy doing my talks and try to do them as often as possible (I think it’s just word of mouth really, I’ve never really advertised them as such) but of course they tend to be evening ones now I am working (I love saying that, although I did call myself a working girl quite proudly in public the other day then realised it is another name for a prostitute. Oops).

Anyway it went really well. I have a sort of format which I vaguely stick to but I adapt it depending on the amount of people, their background (eg: medical) and how long they want me to witter on for. I love doing those talks as I feel like I am actively doing something to help those waiting, but I do try not to smooth over any of the sad and upsetting bits as I feel people need to understand just why organ donation is such an acutely important topic. A was so fed up of helping me lug broken cardboard boxes around he has provided me with a large black suitcase on wheels for all my bits and bobs; infinitely easier to manoeuvre from talk to talk and so much more professional looking! The next one I am doing is mid June in Kingston, and is actually an open one so do contact me if you want to come along.

This afternoon was sad as I joined hundreds (literally) of other people to say goodbye to Sam. It was a beautiful service, the most heartbreaking bit listening to her group of close friends stand up and sharing through their tears their memories about Sam and what she meant to them. It’s so frustratingly hard watching; it didn’t have to be like this and I think on this side of the looking glass I feel it even more, just how wrong and unnecessary a loss like Sam’s is. I know how different it could have been, and the fact I am lucky enough to still be here...I don’t know I think it just makes it even more nonsensical. I felt so privileged listening to those who knew Sam best telling everyone all about her, and totally inspired by the bravery of her family and friends. I am thinking of them all tonight.

This evening however will be a happy one, as it is a year since A proposed, so we are going out to celebrate the year that has been amazing in every single way. I cannot believe how far we have come both together and as individuals in the space of 12 months. It has been an incredible journey so far and I am absolutely having the time of my life.

So I am now almost three months into my new job. 3 months! I can’t believe how quickly the time has flown...

I am still loving it there, there is so much to learn and it is quite fast-paced but that’s what I love I think, the new challenge and the opportunity to learn again and try and develop new skills.

Last week I finally agreed to start working 1 day a week from home. It was mentioned from the minute I joined, but I was determined to do a full week onsite, just like anyone else does. I wanted to do this for the first three months as in my head this was the time I really have to prove that I am worth employing (well I have to do that all the time but you know what I mean).

With recent things such as the arthritis diagnosis (thank you so much for everyone who has got in touch and/or posted info about this; it’s so helpful just to know other people have experienced it and are doing fine with it. I am fine too atm, so feeling good about the whole thing and the fact it shouldn’t interfere with day to day too much) it has started to make more sense to at least be set up for the option of homeworking, so if I can’t get into the office for whatever reason, it does not stop me from doing my job. And of course should the flu season/a stomach bug hit then I shouldn’t be on the train/in the office anyway….

So yes there are a million good reasons for me to be set up as a homeworker in case, and if I am I might as well do one day a week at home just to give myself back those few hours spent travelling. So why do I feel like a failure?

It is most definitely all in my head. My team are fantastic and have reminded me you don’t work any less hard when working from home! And of course it’s only one day a week. But I just feel…I don’t know, like I should be there, present in the office, every day for the full week.

As long-time readers of my blog will know, I am not particularly good at caving when I think something is a sign of me relenting to my health. I think this becomes even harder in a way post-transplant, as I am so much better than I was, I feel anything should be achievable. Mind you it’s not to say I couldn’t do a full commuting week, it’s just is 1 day less the better option for me? It probably is.

I’ve always been terrible at the thought of missing out on things too. I used to hate going in to hospital when I was at school, predominantly at the thought of life carrying on behind my back when I wasn’t there. Perhaps this is reminiscent of that…?

I am fully aware this blog makes no sense. I think I just needed to get it out of my system so I can move forward and accept the fact it’s not because I’m different or weaker than anyone else, it’s merely that that will suit my personal circumstances better and enable me to stay well and fulfil my role. Now I just need to believe that...

First BBQ of the year for my family yesterday! You aren’t supposed to have barbecued food post transplant so I always take mine off of the BBQ and head straight to the kitchen to nuke it in the microwave until it is rather small and sizzling. It means I get to enjoy the BBQ taste like everyone else but just in the safest way possible. I am totally overexcited about summer this year as let’s face it, last years was a bit of a no-show. And now it’s beginning to show, I am starting to get excited about my longest holiday since 2003 (2 weeks baby!!) which will be at the end of July…bring it on!

Oh and final point - LLTGL sent out it's first ever newsletter yesterday! Very exciting (well for me anyway!) If you aren't on our mailer but would like to be, please just contact us through the website (or email me) and we will get you on there. Yay!

I woke up very early on Friday morning. When I say very early I mean I had only gone to bed a few hours before and should have been sound asleep. The culprit was my hands, which were feeling rather odd and throbbing a bit, as well as feeling....well, clownish, which isn't as amusing as the description suggests. Just almost numbish, achy and awkward.

Being a mature grown-up independent woman I promptly woke A up to tell him (as clearly he needed to know at 3.20am that my hands felt a bit funny.) We couldn’t see anything visibly wrong and I eventually got back to sleep.

When I got up for work I jumped out of bed (am still in the process of loving my job) and yelped in pain as I put my weight on my right foot. It felt like I had sprained it, thoug I was fairly convinced that unless A booted me out of the bed as penance for my earlier disturbance, I couldn’t have physically done anything to it.

As I attempted to get ready for work I quickly realised this wasn’t going to happen. I was lolloping along like a doll that’s lost the stuffing out of one leg and couldn’t grasp things as my hands were too sore. A tad worried by this stage I decided to retire to bed and phone Harefield. The on-call wasn’t sure it was related to transplant but couldn’t rule anything out either so suggested I ring in again when the transplant nurses are on duty.

I am not very good at having health stuff going on and not understanding what it is (you can imagine what a joy this made me to treat post transplant can’t you) so got straight online to talk to any other CFers/post transplant people who might have had a similar experience.

I hobbled to the GPs to get a blood test on Harefield’s recommendation and the GP confirmed what a friend of mine I had spoken to online had suggested it might be; “I suspect it’s CF related arthritis”.

I was not amused. I don’t know much about this element of Cystic Fibrosis and anything you don’t know about is instantly scarier. From what I understand, there is no exact diagnosis for arthritis, it’s just if you show symptoms for some time I guess you have it. Today things seem much better, fingers still a bit sore and stiff, and I am a tad limpy still, but definitely better. I shall wait and see what happens, and try not to panic about silly things such as “oh god, how am I going to do the adidas challenge then?!” when we have no idea whether this actually is, or even if it is how it will behave. For all I know it will fade away and this will be the only flare-up I ever have. Or it might be totally controlable....we will wait and see.

On a much more sombre note, the CF community was all very saddened yesterday as we lost Samantha, known to most as Princess Sam. I had known her for some time, in fact she had wandered to my room when I was incarcerated with my old lungs, a chest drain in situ, to offer to order some pizza on my behalf as I was unable to move.

Sam’s health deteriorated and she spent the last 6 months pretty much living in hospital. During this time she held her head up, kept on going, and even did an interview with Cosmopolitan magazine to raise money for the ward she was stuck on at the Brompton (said interview will be in June’s edition and which she told her mum she still wants to go ahead...even though she will not get to see it.)



If you get a minute, please do have a read of Sam’s blog. It’s incredibly open and honest, and frank just tells it like it is really. She was a wonderful girl with a huge heart and will be very very sorely missed. Her family and her friends are in my thoughts right now, and I just wish so very much (and get cross thinking about it) that she had received the transplant she so desperately needed and so richly deserved. As Oli points out on his blog, it makes absolutely no sense why some of us are saved and others die, all we can do is use this sadness to fuel the fight to raise more awareness. Job for today if you are reading folks, please show people this beautiful girl who lost her battle yesterday and tell them to get online and sign up to the organ donor register.

Thank you

First of all, fantastical (a word? it is now...) news:

My friend Jac got her transplant on Friday! A very modest and quiet lady, Jac has been an absolute source of strength for me for years, talking me through my most insane moments in her calm and rational manner. Am totally and utterly delighted for her and her family. If you haven't read her blog before I do recommend you go and give it a read.

This weekend A and I went "oop North" to Derbyshire, to visit my Grandad. He is now a grand 92 years old and rather fantastic. Derbyshire is a gorgeous place, one that holds many fond memories from childhood. It's amusing how rose-tinted your memories get, as I am sure I would complain bitterly at being dragged out on walks along the Edges, however now I look back on these walks with an adult (well fairly) eye and see them for the beautiful pleasures they are.

Emmie stumbled upon a rather ingenious idea for raising funds for LLTGL, that is the Great British Duck Race. If you hadn't heard of this before don't worry, neither had I, but it sounds like a rather awesome day and even more excitingly we have entered Live Life as one of the sponsorable (more made up words) charities, so by clicking here you can not only adopt a duck to take part in this race, but raise funds for LLTGL whilst doing so. Woohoo!

A final random note: to the nice man who when the heavens opened as the commuters got off of the train this evening, paused to allow me to hide under his umbrella from the torrents which had already soaked me, thank you; my inappropriate shoes are remarkably dry and unbattered considering. To the other five people holding umbrellas that had already walked past however...I toss my damp hair in your general direction.

I know I know, I am a terrible person who is ridiculously behind on her blogging and I vow not to let this lapse happen again!

I had to have the day off of work the other week as I had exhausted myself. Now before anyone gets too worried about work being the cause, I am thinking running from place to place (Leeds > Germany > London > Newcastle > London) and not stopping for 16 days on the trot was probably the cause…

So anyway, work (being great) insisted I take the day off, so for the first time in ages, I lay in bed as if I was “poorly” and tried to rest.

And I hated it. As I lay there, flicking from channel to channel trying to find something which wouldn’t slowly kill off my brain cells one by one, I had a very sharp and vivid flashback to when I was ill and this was all I could do, and it panicked me. The feeling of being home and in bed whilst everyone else is at work now for me merely holds bad memories. As A said, I am going to have to get used to enjoying days off again!

Last weekend, A and I decided to do a massive spring clean and essentially remove as much of 3 years worth of contents that we possibly could. In the past, due to my naughty behaviour, the only ever time A got the chance to do big throw-outs is when I was away in hospital (safe from any dust and cleaning product fumes that might emerge) but we had never, both of us, really gone over the whole house.

Having never done a full spring-clean before, what I didn’t expect was the emotional side of it all. Hidden away in cupboards, buried under various documents and letters, emerged traces from my past. A letter I had written to a friend, chatting excitedly about finding “our new house” which never got sent as I had a rather large pneumo the day after which kept me out of action for some time, cards from when I was in and out of the Brompton like a ping-pong ball (how people kept up the patience to time and again write to me I have no idea but I am very grateful), a letter from a beautiful young lady with CF who is sadly no longer with us as her transplant never came, lung function reports which at the time I was pleased with as they’d gone up 2% but I look now and cannot believe the difference. Bitter-sweet memories which are tugged to the forefront of your mind by triggers like a card or a gift, which is one of the reasons I am such an atrocious hoarder; things hold so much significance to me and to various episodes in my life.

I have also signed up (third year running!) to do the hydro active, which now appears to be called the Adidas challenge but which shall always remain hydro active to me. People are already joining the Angels so please do hurry and sign up if you want to help us raise money for the CF Trust. I am looking forward to getting training and hopefully my ankles will be significantly thinner than last year...

A while ago the CF Trust asked to give a presentation to BOC (British oxygen company) and didn't think too much of it, however as it loomed nearer it suddenly appeared that I would be speaking in front of the key representatives for 20 BOC related oxygen groups worldwide. Slightly more nerve-wracking than I thought then.

However the day itself went really well. Firstly I must point out this was the company that supplied my chemist with Cylinders, when Oxygen supplies were good. The changeover (a result of privatisation) was to a different company entirely, although I obviously aired my grievances to ensure that everyone present would be acutely aware that this mustn't happen to them.

I had to speak for an hour, so I chose to educate about Cystic Fibrosis as much as possible, so included a great amount of detail about CF and about life living with it. It was pretty similar in many ways to other talks I have done, but with a lot more focus on oxygen. Obviously.

I was overjoyed to be given the chance to talk to BOC. I think young people using oxygen is a greatly neglected area, and this belief is supported from the very first booklet presented to me when I initially received my oxygen concentrator. There was a nice smiley woman, glamorous looking, but definitely in her 60s, sitting in her armchair smiling wearing her nasal specs with the concentrator behind her. The majority of advice, expectation of needs and service is angled towards older (predominately COPD) patients, which is quite understandable seeing as they make up a vast majority of the customers. However us young folk - not only pwcf but those with lung diseases like Rachel and Nattie have who I have talked about before – we are a significant group too and we have very different needs.

Living as a 20-something on oxygen, you want to go out, you want to carry on living, go to restaurants, out with friends, perhaps even clubbing (only did it once but damn glad I did). I wanted to talk about the psychological issues but wanted to do something which would make the assembled understand a little better what it is like going out for the first time wearing nasal specs. So as I broached this subject, I presented each person with luminous thin strips of post-it notes which they were instructed to stick to their face. An amusing site, but a serious reason behind it; the acute knowledge that there is something on your face which shouldn’t be there but that everyone can see…that’s what I needed them to feel .When I told them all they could remove them several of them actually kept them on, which I saw as a gesture of support and empathy, and I was touched by it. Either that or they liked the luminous colour against their skin...

I met some great people and I hope that I gave them a good idea about what living with (not just living on, but living with) oxygen is like. Whilst I am free of the constraints of 24 hour O2, so many people, old and young, require it 24 hours a day, and for these people it is absolutely vital that they have a good quality service run by supportive and empathetic people who understand their customers’ needs.

I will write a longer entry soon (honest) but whilst I am rushed off my feet, here is the article recently published by a national newswire.

Hurrah!

Ps - health fab, hence mad running-aroundness. I was in a bit of a car-smash on monday but am fine (car however is not).

DONOR CAMPAIGNERS CELEBRATE CHARITY STATUS

Two inspirational young women were celebrating today after their campaign to highlight the chronic shortage of organ donors was given charitable status.

Emily Thackray, 24, from Ewell, Surrey, and Emma Harris, 33, from Pewsey, Wiltshire, both have cystic fibrosis (CF), the UK's most common life-threatening genetic disease which affects various organs of the body, in particular the lungs and the digestive system.

The average life expectancy of a CF sufferer in the UK is just 31 years old, with the majority of deaths caused by progressive lung damage.

In 2005, Emily joined thousands of other people in the UK on the transplant waiting list.

But faced with a 50% chance of dying while waiting for a transplant due to the lack of donors, she and Emma decided to take matters into their own hands and launched the Live Life then Give Life campaign in 2006.

Since then Emily has received a life-saving double lung transplant and the campaign has grown beyond all expectations with high-profile support from celebrities including Richard and Judy, Kerry Katona, Bill Bailey and John Terry.

The pair have now taken on four other young people - all of whom have been personally affected by the shortage of donors - to help run the new charity.

Emily said: "I am only alive today because someone out there not only made the decision to donate, but then took the time to sign up to the organ donor register. I remember my donor with every breath I take and have accomplished a million and one things I never thought I'd be able to do.

"The fact that we have been given charitable status means more to me than I can explain; we have always had the passion, the drive and the motivation to change the current state of organ donation in the UK, and now we have the means."

end

Live Life Then Give Life.

Registered Charity number 1123333.

What can I say but...

YAY!

My birthday was excellent and I was totally and utterly spoilt as usual. A and my mother decided that this year I should blow out all 24 candles in one go, which I duly did and was rather chuffed with myself.

Since my last post I have been to two exotic locations; France and Sheffield (one arguably more exotic than the other)

Sheffield was for work and involved me travelling up there on my own and staying in a hotel on my own. Now for a 24 year old (woohoo!) that's not really a big ask, but I still find these moments of assumed independence oddly unnerving. There’s absolutely no reason why I wouldn’t be fine doing this, but I suppose when you’ve been so heavily reliant on others and so used to people being with you for everything, “firsts” are always a tad unsettling.

As it turns out, I loved it. It was great to be in the hotel by myself, and a fantastic confidence booster when you face something you’re unsure you can do (had fantastic visions of me ending up in Aberdeen or somewhere).

Whilst in Sheffield I had the privilege of meeting Nattie’s mum. Having been “working” with rather poorly people for a while now, it takes quite a bit to shake me the way Nattie’s story has. She is close friends with Rachel, another completely awe-inspiring young lady. These two are not even 21 and have faced more than most of us will face in a lifetime already and are still smiling. Please pay their page a visit; every time I do it inspires me.

Then to France over Easter; 3 days of eating, drinking, taking in the sights, eating a bit more…a fantastic break. Back to work today (which I am still loving) and so life continues to move at a rapid but exciting pace. Oh and last of all watch this space for some exciting Live Life Then Give Life news coming soon…

I was discharged from Harefield exactly one year ago yesterday.

I still cannot quite believe how far I've come. I remember so vividly feeling nervous, shaking like a leaf (the medication doses combined with my muscle wastage caused this) my speech was slow and hesitant (something which I think anyone who has spoken to me recently would agree is no longer a problem) and I was scared; scared of what lay ahead, of the unknown. It was an exciting but terrifying moment, leaving those winding safe grey and blue corridors, leaving a room which consisted of a bed, a chair and a timetable of daily monotony.

I knew what was coming each day and when and why, but more importantly I didn’t really have to know, as there was always someone there of the medical profession to double check everything anyway. Becoming institutionalised is, in my opinion, a well-established phenomenon. Desire for your freedom begins to give way to fear of it, and dislike of your restrictions is disolved by comfortable routine.

I needn’t have feared; life at home was more wonderful than I could have imagined, and what the psychologist had said was true; you don’t need to worry that you have lost your “place”, your role as the sick one, as your new role will quickly flourish and grow and feel normal faster than you think.

Life since 16th March 2007 has moved at such speed that I feel like I’ve been flying. I have packed as much as I possibly can in every single day, firstly as I just want to grasp each and every opportunity with both hands but also I think to some extent because I still find it hard to let go of that slight underlying fear that this magic carpet might be whisked away…I don’t want to waste it whilst it’s here.

This has been a monumental year, and I’ve done a million and one things I never dreamed I ever would or could. To round off a year out of hospital in style, it is my birthday tomorrow. Amusingly a year ago having been firmly instructed “have a nice quiet weekend, not too many people, not too much going on” my mother threw a party for 100 people in a slight (and possibly inherited) fit of over excitement.

This year will be much more serene (am a working grownupperson) but equally as special. I say it all the time and I imagine it’s becoming so very boring to read but there are no other words; I am such a lucky lucky girl.

I get everywhere I do....!

Glad to see Alice is doing so well, pop along to her blog and say hi if you can as she only recently got her new lungs.

Today was a little strange.

I woke up at 2.30 am with a splitting headache and didn't really get back to sleep after that. Then got up and staggered around getting ready to go to hospital, not quite considering it might not be such a good idea to jump in the car feeling so rough. After an hour sitting in traffic I pulled over and was, erm, a tad sick.

Having clearly lost my sanity along with my breakfast I continued driving (not advised) and managed to get to harefield in one piece. My lovely friend who had the joyous pleasure of living with me for 3 years at uni met me there and looked after me whilst I dozed on a bed in a sideroom. Goodness knows what was going on with my body this morning but it wasn't pleasant.

The good news however is that my lung function is way up! And after my blood results and Xray all came back clear I was allowed to go home, as my consultant wisely pointed out just because you are post transplant doesn't make you immune to picking up the odd nasty which everyone else is just as susceptible to as you.

So to summarise: everything is fine. Taking it easy tonight. Lung function is fab. so hurrah for that!

Harefield update as promised:

I am a tad put out. I always had this complex before my transplant that I shouldn't start thinking I was onto a winning streak as inevitably my body would step in and throw a spanner in the works (interesting mix of images there).

A year of playing it safe and my lung function has been impeccably behaved. Then I start my first ever full time job….and my lung function dips for the first ever time post transplant.

Now I know it’s not the job. How do I know? I just do. I am suspecting it has rather more to do with a certain head cold which had me snuffling all last week. But seeing as my immunosuppressant levels have also dipped a bit, I have had a change of medication doses which means….I have to go back up there on Monday morning.

If there is no improvement, then the dreaded “R” word is immediately investigated and I will need a bronchoscopy. I was less than amused when heading back out into the hospital grounds and may or may not have been sporting the face of a five year old whose ice-cream has fallen out of its cone and onto the floor.

As has happened to me before when I’ve been feeling sorry for myself, perspective introduced itself with a gentle nudge, this time by the way of a gentleman who hesitantly asked if my name was Emily. When I replied in the affirmative, he grasped my hand and informed me he was John’s father.

I had the privilege of meeting John when I was in for my last bronchoscopy. Really lovely guy, warm smile, friendly and emailed me at a later date to say thanks for popping my head round the door and we emailed back and forth a bit.

His father was gentle, dignified and kind, and informed me that I make more of a difference than I’ll ever know. How someone can have the inclination to tell someone something so warm like that at such a time is beyond me. I hope if John’s father reads this he will know what a lot that meant to me, and how I was merely humbled by his kind words.

So all of the above considered, I am absolutely fine. I need another little check up next week, but am working away merrily all this week and still loving it. If an additional appointment and some further tests is all that’s required at present I’m in a rather peachy position and intent to remember that this week.