This is my life, and I choose to love it.

2011-06-02T18:34:00.006Z

My grandad was an extremely generous, humble and loving man. We had to say goodbye to him yesterday, and though it was very sad, it really was a celebration of a wonderful man who influenced many throughout his 95 years. The number of people there was particularly incredible for a man of his age, and showed, I think, how loved he was.

Grandad quite simply took pleasure in everything about life. He had by no means had the easiest of lives, one of the most difficult periods being when he was captured at war, and held in a prisoner of war camp for 3 years. In the reading given at the service yesterday, it said how incredible it was for someone to come through all of that and not have a shred of bitterness. I completely agree, but knowing my grandad, I am not surprised.

I loved listening to my grandad's stories. He would often talk about his life when he came home from the war, was reunited with my gran, and lived in a little caravan which he bought with all the money he had. He said those were some of the happiest years of his life, because he was reunited with my gran, and they were both safe and well, and able to start a family. Family meant more to grandad than anything else in the world.

My grandad never stopped being facinated in life, and all that it had to offer. He was still going to literature classes at the age of 90, and loved huge Everests of literature such as Pepy's Diaries and War and Peace. He was so knowledgeable; I remember phoning him when I was at university, and telling him about the book I was studying (Candide). He listened with great interest as I told him my thoughts on it all, before quoting the final line of the book, beautifully, and off by heart. He was so humble, that I never even knew till yesterday, that he had been awarded a BEM.

One of my favourite memories is sitting at a pub in Derbyshire with him and A, and he picked up the OAP menu saying "isn't that lovely that they give the old folk a special offer." He was about 87 at the time. One Christmas, we were at his house, arguing about who was number one at the time, and he interjected with "no it's actually the Spice Girls" which was, of course, correct.

The biggest thing that my grandad taught me is that you can be completely satisfied with your lot, and yet still push yourself to better yourself, to learn and achieve more, and to explore the world in greater detail. It seems like two very opposing points of view, but he managed to do them both. He wanted for nothing, except for his family to be happy and thrive, and I've lost count of the number of times I heard him say "I'm a lucky man". Truth be told, I think we were the lucky ones.

"I feel that I cannot vanish, since nothing vanishes in this world, but that I shall always exist and always have existed." - Leo Tolstoy

2011-06-02T18:33:00.000Z

It's been a while...

Oops.

And apparently I only blog on family birthdays now, as today my tiniest dot of a sister Abby turned 21 and is now a big grown-up. Sort of. Happy birthday boblet xx

So let's talk about me (well this is my blog after all...)

When last I wrote, I was still needing monthly bronchoscopies as that pesky lower lobe in my right lung was convinced that closing up in a sulk was the right answer. I had also been chasing my fundo op for some time. Quite a long time. Too long for my liking actually.

Anyway, the good news is I was fundoplicated (word? if not, it should be...) on 7th April (when they called to change the date I was ready to go a bit stabby, but luckily it was only to delay it by 24 hours) and it was ok. A and my mum came up with me on the day, and all seemed to be going fine, until the surgeon took a look at my stomach and noticed the scar from my MI op which I had at birth. Cue a slight panic as my scar is rather large, and they were immediately concerned that keyhole surgery would no longer be possible. I was told I'd probably need open surgery, an epidural, and a couple of nights in intensive care. You can imagine how well I took this and sulky my face became.

There was also a minor panic when they read my chart and realised I was a transplant patient going under a GA (random nurse reads "lung transplant" and sees "DANGER") but luckily I had a wonderful anesthetist who took one look at me and said "don't be daft, she's stronger and fitter than most of us!" Luckily for me, it all went very smoothly, the surgical team were excellent and I woke up relieved to discover that it had indeed been done via keyhole. Eating and drinking was very tricky at first - I could only really eat soup for the first week and even drinking liquids too quick caused a lot of pain - but I'm now pretty much back to a normal diet, except that I cannot eat quickly, and I cannot eat half as much as I used to be able to (neither of these are bad things).

The most exciting news of all is that my lung function has already improved. In fact, Harefield were so thrilled with my report that Dr C has taken me off the various nebulisers I'd had to go on to stablise things. Needless to say, I'm over the moon, and to anyone being "threatened" with this operation, yes it isn't very nice, yes it is a hassle, especially the lack of eating part afterwards, but I know many many people for whom it has worked wonders, and I appear to be one of them. Not nice in the short term, but worth it by far in the long term I hope.

So that's an update on me. I'm going to write another little blog now, which I think will autopost tomorrow. Bit like buses, my posts.

2011-03-08T05:42:00.000Z

Today is the day my mum has been waiting and hoping for....I'm going to dedicate an entire blog to her.

Actually the reason today is so exciting for my dear mother is that she is celebrating the big 5 - 0! Anyone who has met her will know that that's very hard to believe, but it's true. So I would like to take the opportunity to write about the wonder that is my mum.

When people meet my mum for the first time, I think the main thing they are hit by is the sheer energy she brings with her. Apparently I'm quite like my mum, but I'd say you need to times everything by 200 - volume, passion, chattiness etc - and you're coming somewhere close. Meeting my mum for the first time can leave you feeling a little like you've been hit by a tornado, but there's no doubt that her enthusiastic and warm personality is completely infectious. She wrote in my blog once and her post received the highest number of comments my blog has ever recieved.

My mum is a huge inspiration to me. She is one of the strongest people I know, but unashamedly wears her heart on her sleeve. She taught me that being brave isn't about keeping a stiff upper lip; sometimes it's about weeping copiously about the sad times and then picking yourself up and moving forwards. She taught me that family and friends are pillars of strength that can give even the blackest situation some colour again.

As a child, my mum taught me that politeness, manners, and good behaviour are not an optional extra. Her capacity to love and care for my sisters and I in equal and abundant measure, especially throughout the turbulent health years, is exceptional. She's been there for me every single step of the way, physically and mentally, and has fought my corner fiercely when I've not had the energy to fight it myself.

My mum has shown me that if you want something, you should go after it. Nothing is unachievable with hard work, and you're never too old to start something new. My mum has had several different careers, and not so many years ago, she decided she wanted to be a teacher; she is now a headmistress and has just completed her MA.

My mum taught me that my CF doesn't mean I'm more unlucky than others or that I am allowed to wallow in self-pity, but that everyone has their own burden to bear, and you just have to get on with it. People say I'm great at making the most of life, but it's because of her that I'm able to do so.

I have learnt from my mum that you have to lead by example; if you believe in something, then you need to be the one to set about doing it. Don't wait for the world to change, go out and change the world. That even if some people don't believe it can be done, you can be the one to try and achieve it.

My mum has shown me how to seek joy in life; how to look for the positive, find the funny side, and enjoy the moment. She's shown me that a rich and fulfilled life isn't handed to you on a plate, but instead you have to grab it with both hands and make the most of it. I am biased, but I believe that she is truly one in a million, and I couldn't be luckier to have such a wonderful loving role model in my life.

Happy 50th Birthday Mummy, thank you for being you xxxxxxx

2011-02-24T16:25:00.008Z

Eep, a very neglected blog! In fact I only realised how long it's been since I posted when I got an email from a follower, checking everything was OK! So apologies for that folks.

As always, great big lapses in blogging means that life is going well, and far too fast. Health is fine at the moment; following my last bronch I was started on steroid nebulisers and they also discovered I had a chest infection (which explained why I felt so hideous afterwards). The combination of whacking that infection on the head plus these steroid nebulisers has been really positive and the best bit is, I had my monthly bronch on Tuesday and for the first time, the airways were open enough that they didn't have to do dialitation! I'm due in clinic in 4 weeks, but this is an excellent sign as it looks like said airways are getting bored of mucking around and starting to behave nicely.

Stomachtwistyop wise, I've had my outpatient appointment and I've had my pre-op assessment and I FINALLY have a date for the op; 6th April. Am a little frustrated to say the least, as this will be a grand total of 5 months after referral, and I know the surgeon who reviewed me put me forwards as urgent. But at least I have a date, the op will get done, and hopefully my right lung will be impecibly behaved afterwards.

The most exciting event in the last month is probably the fact that I somehow managed to win the Lifetime Achievement award at the Justgiving awards! It was a wonderful night, full of inspiring stories and fantastic people, and I was genuinely shocked to win. LLTGL were up for Best New Charity but were beaten by Shelterbox. We all had a fantastic evening and you can read more about it on the LLTGL blog here. Here's a few pics:

Work is great, exceptionally busy, but am currently on half term so am trying to catch up with myself. I am hoping next half term is slightly less frantic as I do feel like I'm chasing my own tail most of the time at the moment! What a nice thing to have to worry about though, being too busy. Hopefully won't leave it another month till the next update!

2011-01-12T17:30:00.001Z

Wheezy Penguin: Revisited.

It's always tricky undergoing procedures when you're feeling perfectly well and you know that they'll make you feel rather crap. Yesterday was bronch number...actually, I'm not quite sure what number, but it was another one anyway.

Dr C was hoping that it would be a case of going in, taking a look at the naughty airway which keeps closing up and seeing that it's decided to behave and stay open, however unfortunately this was not the case, and when they got in there they saw that it was as inflammed and restricted as it has been every other time.

This means that I'm booked in for yet another bronch, stenting and cryo....freezing...thing next month as well. A tad frustrating, however Dr C is still confident that this is all down to my reflux, so bring on the fundo op is all I can say! In the meantime, he's stuck me on a steroid nebuliser. I didn't even know they existed, so you learn something every day.

Bit frustrated as I woke up feeling awful today - lots of pain and very wheezy and breathless. This meant a morning of sleeping and no work. Hmm. I don't like missing work, in fact I'm pretty much only ever off work if I'm actually in hospital. As you may have noticed over the years, I'm not a patient patient.

As I said at the beginning, it's tricky psychologically going into a procedure feeling fine, and coming out feeling rubbish, but I know that it's vital they keep stenting this airway open as I do not want my right lower lobe to suffer permanent damage. The team know what they're doing and the important thing I need to remember is it's all preventative; it's all about keeping me fit and well, rather than anything more sinister.

I have my appointment with the stomachtwistyman (as he shall henceforth be known) on Friday so hopefully will find out more about when the fundo op is then. Do you think asking for it to be sooner rather than later because my birthday is in March and I want to be able to eat Birthday cake counts as a medically relevant reason for urgency....?

2011-01-04T07:53:00.001Z

Four years ago today, my life was saved by someone I never had the priviledge of meeting.

I didn't know them, I didn't know their family, they knew nothing about me.

Four years ago, life was very different. My lungs were functioning at just 16%. I was completely dependent on a variety of drugs to keep me alive, and wore oxygen 24 hours a day to support my fragile and exhausted lungs. I had a carer help me get out of bed and dress myself. I could not brush my own hair. I could not speak in full sentences. I was so breathless, I could not walk. I could not laugh.

Four years ago, someone, somewhere suffered a terrible tragedy. A family's world was turned upside-down, and in that moment, they made the decision to donate their loved one's organs.

Four years ago, after 22 months on the waiting list, I received the call that saved my life. Following the transplant, the doctors confirmed that without that call, I would not have lasted more than a couple of months. Because of that call, I have had four wonderful years of experiences, hopes, dreams, challenges, joys, sorrows, laughter, tears, birthdays, christmases, celebrations....of life.

The word thank you is not enough. The gratitude I feel is not enough. I ask you today to please keep that special family in your thoughts, because they are marking a very different kind of anniversary. I hope the knowledge of what they have done for me and the others saved that day brings them a little comfort. I cannot imagine how they are feeling.

I bang on and on about it, but it's because it is literally a matter of life and death. Organ Donarion saves lives, but apathy kills. One family, one decision, that's the only reason I'm here today. There are thousands of people in the position I was in four years ago, desperately hoping and waiting. People like Tor.

Please consider sharing this blog with anyone and everyone, and if you're reading this and have been motivated to sign up, you can do so here.

I remember my donor with each breath. Please, Live Life Then Give Life.

2011-01-01T13:02:00.010Z

1st January 2011.

I think I'll type that again. Just because I can. 1st January 2011.

There's nothing quite like a new year to remind you just how bloody lucky you are to still be here. I am sitting looking out of my window at quiet and sleepy stillness outside, relaxing after a busy night of partying, and thinking just how wonderful it is to be commencing a new year full of new hopes and opportunities.

Looking back on 2010, I'm unsure on how to summarise it. Technically it was a mixed bag, with huge sadnesses such as the loss of Jess, and a few turbulent health patches dotted throughout the year, however I can honestly say that my main memory is that it flew past far too quickly due to so much happy stuff being crammed in.

Things such as a wonderful trip to Mauritius, celebrating my 26th birthday 90s stylee, hours and hours of endless joy provided by my goddaughter and my niece, the glee showchoir, concerts, singing, partying, dancing, friends, family...these are the things that made 2010 great.

A few of my fave pictures from the last 12 months to finish. Wishing all my blog readers a happy and healthy 2011. What will the next 12 months bring? There will be highs and lows, tears and laughter, joys and sorrows, because that's what life is made up of. No-one knows for sure exactly what this year will bring, but I'm going to try my hardest to make the most out of every second.

2010-12-03T18:10:00.005Z

Wheezy Penguin update time!

Look at me being so restrained that I didn't immediately post I'M HOME AND MENDED this time after discharge. Instead, I've been very cautious and waited a full week to watch for any yo-yo type behaviour, but since I was discharged a week ago today I think I can now safely say I'M HOME AND MENDED.

Well, pretty much mended. Basically, we are definitely on the right road now. Watching my lung function creep up steadily day by day has been a huge relief and joy. Not quite back to normal yet, but practically there. I've even been into work (don't tell me off, I only made it in 2 days before the snow scuppered that plan anyway....) and in fact Harefield are so happy that my follow up appointment I was due to have on Monday has been cancelled. WOOHOO!

It seems like the answer was a big fat whack of methylpred followed by a now 6 week long course of high dose oral pred. Whilst I am now thinking about food practically 24 hours a day (thanks steroids) they have done wonders, and I feel so much better. I had almost lost an entire litre of capacity so the difference is quite marked. I will confess I was rather scared at some points, particuarly when the phrase "we don't know what's wrong" was uttered (more than once) as I'd always rather know what I'm dealing with.

Was it rejection? We still can't know for sure, because even though the steroids have worked, steroids can work for a number of things, so it may not have been that at all. I think Dr C is still putting it down to the reflux issue; since coming home I've raised the head of my bed quite significantly and that may be helping too (I'm not really sure) but at least I know the fundo op will sort that out in January. Plus, I won't be able to eat properly for about 6 weeks afterwards so at least I'll lose the 20 stone these steroids are going to make me put on...

Huge thanks for all the lovely messsages people have sent me; I was really touched as even though it was a little blip, I was a nervous bunny for a while and the support was very much appreciated.

I shall leave you with a picture of our back garden as it is at the moment; yes this snow is hugely disruptive but it is also undeniably beautiful.

2010-11-24T17:15:00.003Z

Wheezy penguin does the hokey cokey.

In, out, in, out, you shake it all about...

I managed a grand total of 4 days at home before being admitted. Again. To be fair to the team, they didn't have much of a choice, as my follow up lung function which should have shown a nice healthy jump due to a course of IVs bashing whatever infection was down there over the head, instead showed a further 10% drop. Bummer.

I was brought in for another bronch and further biopsies. I had a busy day planned for Tuesday and did actually try to sweet-talk the doctors into the idea that putting off the bronch till Friday wouldn't do any harm, but funnily enough they weren't particularly receptive to the idea.

I think I knew deep down I wasn't better; I was still wheezing, still needing to neb every couple of hours, still coughing and squeaking and huffing and puffing. I did however have a little sulk and cry on Monday because, let's face it, when the docs think they've treated and solved the problem and it turns out it wasn't what they thought....it's pretty scary.

So the question is...what on earth is going on? I was hoping that bronch and biopsy no. 3 would give us the answer but it turns out we're still none the wiser. On the plus side, this means nothing nasty has shown up; no massive infection, no organising pneumonia, no rejection...but of course we still don't know what we're dealing with.

But we do have a plan of action. I'm being stuck on nice high steroids (bring on the fat face) but the good news being they're in tablet form which means I can go home! Again.

Definitely a victory, definitely a positive, but am going to be a little more cautious about celebrating the idea that the wheezy penguin saga is over this time. Please keep your fingers crossed that as well as giving me a huge round face and causing me to eat A out of house and home, this hefty dose of steroids will sort out whatever it is. Because I'd quite like my lungs to start behaving again now. Please. Am asking very nicely.

**EDIT**
Serves me right for blogging so swiftly...doc just came in and the big guy at the top has instructed a slight change of plan. Instead of going straight home on oral steroids I'm going to be given 3 doses of IV methylprednisolone. This is the big nuclear bomb of steroids which aims to crunch any rejection into oblivion. Face will be fatter than I can even comprehend. Hmm.

I will then go home on Friday (yay!) on a scarily high oral steroid dose, but that will reduce on a weekly basis. A slightly more severe path of treatment but do you know what? If this is the safest option and the most likely way of preserving my lovely lungs, then let's do it.

2010-11-19T12:34:00.003Z

Wheezy Penguin saga: the sequel.

I was a tad premature at celebrating my release from hospital, as that weekend, due to raised temps, a drop in lung function and a lot of chest pain, I was re-admitted for IVs to treat a suspected chest infection. The infection was probably all related to the closed airway business, but it was important to get on top of it asap so it didn't cause any trouble.

Clearly my body felt like I wasn't getting enough attention as it proceded to be the week of completely random and unnecessarily silly blood results. First my kidney function danced about in a naughty manner, but quickly returned to my usual "misbehaving but only enough to be kept on the naughty step" level. Then my potasium result came back sky high, causing everyone to move quite quickly to get me attached to a heart monitor (my mother did suggest that this may have been nothing to do with potassium, but simply to confine me to my room and stop me from causing trouble - how rude). They began to return to normal, I was de-wired, and then my ciclosporin level (immunos) jumped up so high I wasn't allowed to take any for 24 hours. That was hugely unsettling as you have it drummed into you as a transplant patient that you must never ever miss a dose. It's settled a bit now, but I'm on a much lower dose than I was on when I went in, still not sure why.

I had my 2nd bronch on Tuesday where they did the dialitation thing (look at me using a real medical word) which sadly I believe was done using a balloon for the stretchification - no pixies involved. They also froze (?) the airway to stop it re-closing. Dr C says I will need another bronch next month and may need the procedure repeated. I felt fine when waking up, other than the fact they'd hit my tonsils and they were now so grossly enlarged that they looked like comedy ACME tonsils. Had a bit of trouble talking and swallowing for a few days but they're going down now.

I was discharged on Wednesday (woohoo!) and IVs are due to come to an end on Monday, when I'll go back to clinic to hopefully hear that my lung function is back up and all shiny and nice again. Fingers crossed that that's the end of the Wheezy Penguin dramas so I can get back into the swing of normal life! I'll be referred for the fundoplication operation asap and by the sounds of things that will take place in January.

On a completely different note, our new LLTGL T-shirts are here! Please head over to our website and consider buying and wearing one; help us spread the word about Organ Donation and save more lives. Thank you!

2010-11-04T15:16:00.003Z

Chapter 748: The story of a wheezy penguin.

Well firstly, I had a lovely half term. A and I took the opportunity to get away and went to Derbyshire where we also visited my wonderful Grandad.

I had been coughing a bit more all week but feeling fine, but suddenly over the weekend just gone I began feeling very wheezy and a bit breathless. By Sunday I was convinced something wasn't quite right and so rang the on-call doctor at Harefield to ask to come to clinic on the Monday. I thought I might be being too cautious but better safe than sorry.

So on Monday I headed up to clinic to get checked out. My FEV1* had dropped significantly (although randomly my FVC** was actually slightly better than last time...) and as the day went on I was feeling more and more breathless and sounded like I was playing a tin whistle very badly. Therefore I wasn't really surprised when I was told I'd be admitted that afternoon for a bronchoscopy and biopsy the following morning to check for rejection and to see if they could discover what was going on.

Most importantly, the bronch revealed no rejection (WOOHOO) but showed a lot of inflammation and narrowing, particularly on the right side. Dr C explained the reason I'm probably feeling so crappy is because the right lower lobe is very affected and that accounts for a very large portion of lung. I'm using nebs again to help ease the wheeze (ha, that rhymes) which just eases the symptoms, but we do have a gameplan.

There is research to show that reflux can affect lung function and can cause a number of problems. A study done earlier this year showed that I do have bad reflux and I was warned I'd need a procedure called fundoplication at some point in the future. Dr C suspects that the cause of this pulmonary hissy fit is indeed the reflux, which probably means I'll need this op sooner rather than later. In the meantime, I'm going to go back in in the next week or so to have another bronch and to have my airways widened (no idea how they do this, have a lovely image of pixies running in and errecting scafolding but sadly I suspect the true method is nowhere near as charming) which will hopefully make me less squeaky.

I have learnt from this admission that I have indeed turned into a complete and utter wuss. I didn't find out the results of the bronch for a little while and I really began to panic about how I was feeling and what it could mean. I think I need to man up a little again....I'm obviously out of practice being lucky enough to stay so well. Am going to try not to push myself too much whilst I'm still a wheezy penguin, and will update my blog once I know whether it will indeed be pixies performing my airwaystretchyopenyproceedure.

*How fast you can blow the air out
**Amount of air you can blow out of your lungs all together.

2010-10-03T10:22:00.009Z

No apologies (I give up with those or I'll be apologising every time I post from now on!)

Quick recap of what's been going on.

Health-wise: everything is really good. Whatever it was that caused me to be in and out of Harefield seems to have vanished *touches wood 20,000 times* and lungs are still wonderful and behaving beautifully. Big yay for them.

Work-wise: everything is fab; September seemed to arrive with a bang and I am (as usual) extremely busy but also (as usual) enjoying every minute. It's lovely to see all the kids again, the little ones shoot up over the summer, it's frightening!

Hydro Active: As always, I took part in the Hydro Active (now the Adidas challenge but to me it will always be the Hydro...) "Team Jess" as we were called this year was formed from a number of Jess' friends and supporters, and her wonderful mum Jackie. We were all dressed in pink and I was in my fairy dress which I have worn for the Hydro before. Holly had brought along some rather bright face and hair paint which I ended up absolutely covered in! I looked so special that on the bus on the way there, an elderly couple paused to take a picture. I am choosing to see that as a compliment.

It was a lovely atmosphere as usual but of course for Team Jess, it was achingly sad as we had all hoped that we would be doing this year's 5k along side the girl herself. Jackie was incredible; I have no words to describe how much admiration I have for that woman, suffice to say it's extremely evident where Jess got her dignity and strength from. We paced round the track in a sort of power-walking fashion, stopping to pose for pics at each Kilometre sign and Holly (the queen of multi-tasking) was tweeting for LLTGL all the way round!

As the finish line came into view, we all held hands and ran towards it, raising our arms as we crossed the line. On finishing I felt tears pricking my eyes and turned to see all Team Jess members were feeling very much the same emotion. We all hugged as the tears flowed, the joy of finishing, and the sadness of Jess' abscence. It was a very emotional moment but one I feel proud and priveledged to have been a part of. You can still sponsor Team Jess by clicking here.

Last weekend, I was in Cardiff to give a talk at a very prestigious transplant event. There were 500 delegates there and so the pressure was on, but it went well and I received a standing ovation at the end. More details as to this talk coming soon on the LLTGL blog, but here's a pic for now.

I cannot believe we are already in October, and this month is going to be extremely busy, in fact I don't think I have a single free weekend. What an absolute joy to be able to say that - no big pauses needed to rest up and let my body recuperate. Pop over the Tor's blog to see what life used to be like for me. Fingers crossed her call comes very very soon.

2010-08-29T05:50:00.006Z

Shock horror, it's me, actually posting on my blog.

Do I have an excuse? Not really. Maybe this blog is heading into retirement, I'm not sure. Anyway a catch up on what's been going on.

The end of term was manic, with dozens of concerts and shows, but I can't complain as I thrive off it and loved every minute, even though I was thoroughly shattered by the end.

The Summer holidays got off to a fantastic start when Jac and her husband came down to stay. I was hugely over-excited at this and we'd been looking forward to it (and trying to get organised enough to arrange it) for a while. We had a lovely day and evening together, but unfortunately that night, my body decided to enter into one of my more random and weird poorly episodes and I started being very sick. Feeling really quite rough (and a little scared - I'm a complete wuss when it comes to being sick, in fact I'm probably braver when I have chest drains and things in) and unable to even keep a sip of water down, I phoned Harefield and went straight up there to get some introvenous anti-sickness.

The main problem with this kind of thing for transplant patients is that if you can't keep your immunosupressants down, it sends your levels too low so once I was in, Harefield wouldn't let me go as I needed to have my immunos via IV as well. A couple of days later, all seemed to have stablised so I was discharged....only to be readmitted 24 hours later as it started all over again.

It was a frustrating two weeks or so, but it seems (she says touching wood half a dozen times) that it has disappeared. The docs were baffled, and the only thing we've changed is to double up one of my drugs (omeprazole for those medically minded folk) so that might be what did it.

Medical rubbishyness aside, one of the highlights of the summer was the Glee workshop I ran mid-August. I had been dying to do one and knew there was a fairly high demand so decided to just go for it and it was a huge success. We had about 30 participants aged 11 to 25 who learnt songs in harmony with choreography and then performed them at the end of the day to family and friends. It was a rediculously busy day and I'm not sure I actually sat down but I loved every single minute of it and would definitely like to run another one.

Participants rehearsing around the piano.

So suddenly here we are at the end of the Summer holidays, and it feels like I haven't even made a dent in my to-do list. I am looking forward to starting back (a big perk of loving my job) but admittedly don't feel quite as rested as I'd hope to! My lungs, I am happy to report, are behaving exceptionally well and in fact on Thursday I achieved my highest Lung Function yet at Harefield (Woo!)

Bring on September and a new term full of new excitement, and lots of new things that continue to prevent me from keeping this blog up to date. But do you know what? If life is getting in the way of finding time to sit down and write on here, I am certainly not complaining.

2010-07-20T15:12:00.000Z

The A - Z of me.

Has it been done before or have I dreamt it up? Suspect I've read it on another blog but cannot find where....anyway, here's my very own personal A - Z.

A is for... well, quite clearly A is for A. My A. That's all that needs to be said on the matter.
B is for... Blonde - both in hair colour and in the brain.
C is for... Choirs. I love them. I run one, sing in one, and help coach in others (mostly for children). The feeling you get from singing together in harmony is awesome.
D is for... Determinism. I'd like to think I have a fair amount of this. It could also be called stubbornness.
E is for...Excitable; I have a tendancy to become far too over excited and need to go for a lie down (sad but true).
F is for... Friends. I have some that are absolutely invaluable; I don't know where I'd be without them.
G is for... Glee. I wish people in my life would burst into song or know the harmonies automatically when I do.
H is for... Hope. I think it's pretty damn important to have hope in your life; when in a difficult situation I'm always craning my neck looking for the rainbow.
I is for... Imagination. I have a vivid one, which is not always a good thing.
J is for... Jewellery. I am a bit of a magpie and have a huge assortment of big sparkly necklaces, bracelets and earrings. I like sparkly stuff.
K is for... Kettle. OK cheating here as I'm trying to get to Tea. A strong hot cup of tea can work wonders in most situations. I probably drink too much of it but it's my only real caffine fix (not a big coke or coffee drinker)
L is for... Life. It's a wonderful wonderful thing.
M is for...Music. I come from a musical family and can't imagine a day without it. Music is food for the soul.
N is for... Nurture. My family are a big part of my life, always have been, always will be.
O is for... Optimism. I am an optimist, however with a good healthy dose of realism. I rather like Peter Ustinov's quote on it: "I am an optimist, unrepentant and militant. After all, in order not to be a fool an optimist must know how sad a place the world can be. It is only the pessimist who finds this out anew every day."
P is for... Pink. Because I love it.
Q is for... Quotes. Quotes about life, about love, about hope or motivation. I collect them for rainy days, as exemplified above.
R is for... Reading. I was brought up in a house piled high with books, with parents who would read us a variety of stories (with all the voices) from a very early age. I love getting lost in a good book, but am notorious for returning to my beloved old favourites.
S is for... Shoes. I love them, but am completely incapable of walking in heels in an attractive womanly way.
T is for...Teaching. I teach a variety of ages, and I absolutely love it. I find it extremely rewarding and each day is refreshingly different from the last.
U is for... University. My years at Bristol University were some of the most exciting and happiest in my life so far. That is despite my, by then, extremely poor health. University taught me a lot (mostly in the school of life), and gave me some wonderful friends.
V is for... Vitamins. CFers have to take vitamin supplements due to absorbtion problems, and along with my enzymes, I've been on these since I was born and always will be.
W is for... Waterworks (of the teary nature). I am not an attractive crier and unfortunately cry at the drop of a hat.
X is for...X-rays. On guestimation I've had around 200 X-rays in my lifetime so far. Probably more in fact.
Y is for... Youth. I still feel like I am in my teens, and that I could wander into a high school classroom, sit down in a lesson, and feel perfectly at home. This is despite the fact I teach this age-group...
Z is for... Zzz - I love my bed. I love curling up on it just to lie and read.

2010-07-03T16:30:00.002Z

"Rich is excited about what the future might hold"

That's my mate Rich's facebook status at the moment.

A couple of weeks ago, Rich was in the Brompton hospital where he had been living for the past two months. He was unable to do....well, anything really. He was using a bi-pap (non-invasive ventilator) pretty much all the time just to keep breathing, he was extremely ill, and his quality of life was poor to say the least.

Rich got his call for his new lungs and new life in mid-june and so far, is recovering extremely well. His facebook status brought tears to my eyes as that's exactly the point; Rich is now able to contemplate the idea of a future. Of new and exciting possibilities. Of persuing dreams and ambitions. Of simply being around for family and friends. There's a chance, there's hope, there's more to come.

Yesterday I logged onto facebook to read that Donna Mansell - an avid campaigner who was waiting for a new heart - had died. Donna leaves behind a grieving husband, and a seven year old daughter.

This is the very real reason that we need to keep campaigning for more donors and for improvements to the transplant system in the UK. If it wasn't for my donor, the top of this blog would now read "1984 - 2007".

National Transplant Week starts this Sunday and runs all week. Please take the opportunity to raise Organ Donation with someone who might have never even thought about it before. There are events happening across the country; you can join in in a thousand different ways, and make a difference.

Let's give more people the chance to think about what the future might hold. The chance to contemplate careers, families, mortgages...all those things that most of us take for granted.

Organ Donation saves lives; the lack of registered donors kills. Please, think about it, talk about it, do something about it.

Thank you.

2010-06-15T17:34:00.003Z

I am feeling increasingly frustrated following comments and remarks surrounding this story here so I had to blog about it.

The story is essentially an incredibly sad one; a young woman with end-stage CF got a double lung transplant, only sadly to pass away from pneumonia several months later. The thing that has wound me up is that everyone has hooked onto one thing; the lungs came from a smoker.

The use of a smokers lungs is an entirely seperate story, and granted, still one up for discussion. But the fact that these lungs previously belonged to a smoker is not what caused her to die. Pneumonia is what caused her death; sadly a complication that anyone undergoing a transplant can suffer. I myself had pneumonia in the month after my transplant which is what caused me to plummet to such dangerously ill levels that the team thought I would not last the night. My lungs did not come from a smoker.

According to her relatives, this lady would have refused lungs had she known that they came from a smoker. This is a completely personal preference. I personally would have accepted any lungs that the team declared good enough as I knew that it was my last shot and that people wait years and years without a single call. I trusted my team implicitly; surely have to when you get to this stage?

Don't get me wrong, I have nothing against her family; I cannot even imagine the turmoil and grief they are going through having fought so hard and come so far, only for the transplant not to work. But I am frustrated by the Media, who have taken two issues and looped them together, to create a cause and affect when that is simply not the case.

There are dozens of comments all over the internet along the lines of "how dare they [the hospital]" and "disgraceful! what poor care" (again the hospital) as well as "how disgusting, to be given a smokers lungs!" and these are really beginning to frustrate me.

Firstly, and most obviously to me, the person who donated those lungs was, in fact, a person. They have loved ones, they have a family who is still grieving for them and who in a moment of generosity agreed that their organs could be used to try to help others. This person gave the gift of life; I don't think "how disgusting" is really a very tasteful response.

All organs undergo extremely rigorous testing. The lungs would not have got through these tests if there was anything wrong with them which caused the team to doubt that they'd give the recipient an extremely good chance of survival. These criteria are so strict that many organs are deemed "non-viable" which is what results in a lot of the false alarms that people undergo. The medical team will have looked at the lungs on an independent basis; obviously the fact that the person was a smoker will have been taken into consideration but when you consider that 50% people waiting for lungs die before some come through, and that any potential donor having something like a chest infection could render the lungs non-viable, then what choice do medical teams have but to open all options and look at each set of lungs on a case by case basis?

The very sad fact is that there are not enough donors. People waiting for lungs cannot wait indefinitely; there are no machines to prolong life whilst the perfect pair of lungs are found. Medical teams do now have to use organs which are described as "sub-optimal" - that is because there is such a dire shortage that at least this offers a chance of survival.

The story is a tragically sad one, and my thoughts are with her family. They are also with the donors family, and with the teams around the country that every day have to make difficult decisions without a crystal ball to see how things will turn out. Transplants are not failproof, but they offer hope, and each and every one of us can raise awareness about them to increase the number of donors and therefore save more lives. Let's use this to do something positive; there are 10,000 people out there who desperately need us to.

PS- LLTGL Ambassador Victoria Tremlett has done a fabulous radio interview about this, which you can hear by clicking here and forwarding to 1hr 13 mins in. Just listen to the desperation in her voice; we need more organ donors. Please keep spreading the word. Thank you x

2010-05-09T19:29:00.003Z

“A man's worth is no greater than the worth of his ambitions” - Marcus Aurelius

“When ambition ends, happiness begins.” - Thomas Merton

I'd start with my usual apology about the lack of blogs recently, but I think everyone's sick and tired of that. Let's face it, life is busy, very busy, and my blogs are less frequent.

So skipping that (sort of), onto my main reason for actually sitting down to write a blog. I've been thinking a lot about ambition recently. A rambly waffly blog about to follow.

Ambition is a good thing. It drives people, it prevents people from becoming apathetic an pushes people through harder times and over obstacles. However I'm not always sure ambition is a good thing. Maybe it's possible to have too much ambition?

I actually wouldn't label myself as ambitious; I'm very easily content and don't feel the need to constantly better myself. Maybe I'm not particularly driven or maybe this stems from years of having to re-adjust my goalposts as my health declined - I'm not sure - but I get quite comfortable and don't often strive for change in my own life (although in external issues I am passionate about it's an entirely different story but that's another blog...)

Mind you, if I had no ambition at all, I wouldn't be where I am today; a graduate with a multi-faceted job and chairman of a charity, so maybe I am quite driven but only to a certain extent?

There are two very oposing quotes at the beginning of this blog, both of which I find extremely interesting. The first suggests that only those who reach for the stars really sparkle, the second suggests that whilst you are constantly striving for more you will never be happy with what you have.

Can both be true? Is there a middle ground?

I do see a lot of truth in the latter, but I believe there can be a balance. I dp think ambition is a good thing, but measured and with a solid ability to enjoy what you have here and now. If we didn't aim for more, we'd never move forwards, but if you're constantly pushing to progress today will pass you by before you've even had time to appreciate it.

I am very lucky in that I find it quite easy to adapt my goals and ambitions. This means I am quite easily pleased (anyone who knows me will know that this extends to things like a pink birthday card with googley eyes on it giving me joy for absolutely ages...) and also means that I can usually put something to the side when it is just too much of a struggle. I'm not saying this is a good or bad thing, but I know it's made my life easier over the years.

As well as aiming high and striving to better ourselves, I think we should be able to look at how far we've come, what we can do right here, right now, and be able to enjoy that. There are so many things I don't make the most of right now because I'm thinking too much about next week, I'd like to pull a bit of that balance back I think. After all today is here now, and tomorrow is only a possibility. Make the most of both.

2010-03-26T08:13:00.004Z

Apologies for being profoundly rubbish on the blogging front.

As per usual, whenever I go silent, it's a good sign; it means life is so busy that I've inevitably triple booked myself and don't have time to update my blog. So yes, all is fine; I am well, I am very happy and I am extremely busy.

March is always a busy month and my favourite month of the year; the weather is warming up, we're heading towards the end of the spring term, but predominantly because it's my birthday. I had a fantastic day and a wonderful celebration, dancing the night away with fabulous family and friends. Below is a picture to demonstrate the classy and stylish celebrations that were held (it was a 90s themed do, we didn't just inadvertently all decide to dress up as Spice Girls).

That's all of an update you're getting today I'm afraid, instead I'm going to list some blogs that I think you should check out when I'm being naughty and lax at writing:

Lucy's Blog.
Yes I'm a tad biased as Lucy is my sister, but she's a bloody amazing writer. Just take a look, particularly at this recent post which I thought was particularly fab due to it's frankness and honesty.

Nick's blog.
Nick's son Adam has neuroblastoma. I have a connection with this family in the fact that I am Adam's music teacher, or was when he was well enough to be in school. The family are desperately trying to raise the money to get Adam to the US for life-saving treatment so please do pop over to his appeal website and read a bit about the family and the campaign as well.

Jac's blog.
I just love her style of writing, and also the stories of Seb, her rather cute dog. Jac is a double lung transplant recipient like myself.

LLTGL Ambassador blog
Written by Tor and Rachy (both waiting for lungs), but earlier this month Rachy received her call and is so far doing very well. If you want to learn more about the wait for transplant, this blog is one for you.

Tori's blog
Another lovely lady waiting for lungs; I love her honesty, her style (both in writing and in her fab clothes) and her ability to pull off bright red lipstick!

The end of term is looming (and with it plenty of concerts) but then for the Easter Holidays, which I am extremely excited about as it will hopefully provide me with an opportunity to catch up with myself. Watch this space.

2010-03-01T09:24:00.003Z

Just to reassure you, I haven't done any of the following:

a) died
b) hit my head and suffered from amnesia
c) given up blogging
d) fallen down a hole somewhere (likely, but luckily untrue this time)
e) become a monk
f) run away to mexico to start a new life

I have merely been busy. But found time to disappear off to a little piece of paradise for a week...

Me swimming in paradise, aka Mauritius.

It was beautiful, hot, relaxing and very much needed. And I feel very lucky and refreshed.

Bit of musing because I need to really; apologies for this being a bit deep on a Monday morning but it's been stuck in my head and I really need to get over it, and, well, my blog is my therapist so hear goes.

I've been thinking a lot about this dream coming to an end recently. Just to reassure, there is absolutely no reason for me to be contemplating this - my lungs are behaving exceptionally well - *touches wood half a dozen times* - and I am happy and healthy and very lucky.

I think it's more that it has been triggered by several other things, one of which is reading the blog of this incredible young woman here. Eva is in the end stages of chronic rejection and desperately needs a re-transplant, fast. Please do pop over to her blog and leave her a message as she loves reading them. Advanced warning, she is very poorly and brutally honest. Every time I log onto it I hope hard that I read the message saying she's got her call.

As well as this, my life seems to have structure and a future right now, and perhaps I am scared of following this path which has implications for not this year and possibly not next year but for some time after that. Maybe even after all this time, planning ahead is frightening as it feels almost like I am tempting fate.

Maybe I just feel too lucky. I have been given so much, do I feel spoilt and demanding in wanting more? Am I afraid that my luck will run out? I don't think afraid is the right word actually, rather that the idea of it running out has been something I've been contemplating a lot more recently.

No one is immortal. I guess the threat of rejection is something every transplant patient considers at some time. For some reason, I've got it into my head that because I've not had any so far *touches wood lots of times again* if/when I do, it'll be a biggie. Any logic to that at all? Nope, none whatsoever. I get cross at myself for thinking about it when a) I'm fine and b) it's all a bit self-indulgent. I think by blogging maybe this little black hole of musing might close up.

Those of you who see me on a day-to-day basis know that there's nothing wrong and I'm not down or depressed. Merely a little thoughtful at present. And it's not really the kind of conversation you strike up with someone: "you know this whole transplant thing? Well I've been thinking about when it all comes to an end..." - way to ruin someone's day! But it is something I think about. Now and then. Don't dwell, but think.

What's the answer? There isn't one. No-one knows when their dream will come to an end, it's not something that is only relevant to me, so the only answer is to keep on loving it and making the most of it whilst it shimmmers.

2010-02-05T10:18:00.007Z

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
- Thich Nhat Hanh, Vietnamese Monk.

It's been a while.

Sorry for the delay, for the break. January was a crappy month for the CF and Transplant community and it really has shaken me a bit.

Jess' funeral was beautiful. Desperately sad but beautiful. I cannot write about it however both Sarah and Holly wrote lovely accounts. Jess' family were incredible; the strength of the human spirit will never cease to amaze me.

A friend emailed me today about something related to organ donation and mentioned that her thoughts and feelings about organ donation had also been deeply shaken. I emailed back with what was essentially a discussion in my own head and in doing so realised I was talking to myself more than anyone. So I thought I'd write it on here. The road to transplant is such a long and difficult journey, why do I still believe that fighting for it is what I should dedicate my efforts to? Because I do, I have to do it, I need to do it...I want to do it.

When you are listed for a transplant, a million and one emotions fly through your head. There is a sense of fear, of apprehension, of acceptance of where your health now is, and of relief. Relief because you already knew by this point that you were extremely ill, and now someone is saying that there might be a way out...that there might be an answer.

The offer of a transplant for many changes their status back from what is essentially terminal to "extremely ill but with a light at the end of the tunnel".

When looking at a typical transplant patient (am thinking cardio-thoracic mainly here) they are hardly the ideal candidate for surgery. In fact, if it was any other kind of surgery being suggested I suspect they'd be laughed out of the hospital. At the end of 2006, I don't think my body could have been much further away from "optimum condition" to tolerate such a major operation.

When I was taken down to theatre, my last words were "I'm so lucky". This wasn't because I was convinced that that was it, I was mended, but because I knew that either way, that part of my journey was over. Someone had tried to save me and hopefully it would work...and I had a chance. A door was opening. I felt relief; the fighting, the hanging on, all of that was for a reason, and now what would be would be.

Tranplantation is not foolproof. It does not always work. We know that, as we sign up to go on the active list, we know that. But I remember thinking "at least there's now a chance". That's what I desperately needed, and that's what I was fighting for.

When it does work...well, all you have to do is read my blog over the last three years to see what happens when it does. I still love watching people's faces when I tell them that I'm a double lung recipient. The shock says it all; how well I look, and how my CF past is a now just a shadow in the background.

Transplants don't last forever. Sad but true. But do you know what? If it all ended tomorrow, I've already done a billion and one things I never thought I'd do, seen a billion and one things I never thought I'd see. I've experienced "normal" life...all thanks to one person, one decision...one family.

For me, transplantation equals hope, a chance, a rainbow. It offers a hope that there are better things to come. Hope that you might step through the looking glass and experience a life you've not dared to dream about in case it should not materialise. And that dream alone is worth fighting for, especially as when it comes true, it's bigger, better and more colourful than you ever could have imagined.

www.lltgl.org.uk

2010-01-16T15:00:00.010Z

Jess.

I've started rewording this blog now for the umpteenth time so I'm just going to write; I keep worrying as to whether I am saying the right thing or not. I need to just write.

I am missing Jess very very badly at the moment. We texted back and forth most days and it hurts knowing she hasn't made it, that her glimmer of hope came too late. She should have made it, I think I am angry as well as sad, she should have had her call earlier. Four and a half years of clinging on is just not fair, and consequently, her body was just not strong enough.

Instead of going on and on about the sadness and the ache which is currently making me feel quite blank and flat (this is my blog, I'm allowed to be selfish) I'm going to talk a bit about what I loved about Jess and more importantly, what she taught me.

Jess was the strongest person I have ever met. Literally. When we went up to decorate her hospital room at Christmas, she was fighting so hard I have no idea how her body was doing it. Mentally, she never ever gave up either. She had a determination in her, a fire that made her so sure of her path and gave her such a focus. It inspired and motivated me to do more.

Jess had a huge heart. She was in hospital having a rotten time when I put up some sort of sulky status about something completely mundane I was annoyed with and the text came through almost instantly "Are you ok? Thinking of you x" Typical Jess always thinking of others; a memory that several other people have conveyed to me in their messages for her condolence book (which, incidentally, if you'd like to contribute to is open to anyone - no matter whether you knew her or merely knew of her and were touched by her - email me for more info). When I was in hospital for IVs this November, I texted her one day saying I was sending her all my mendy vibes and she texted back saying "no please save some for you."

She had a fantastic sense of humour. When Holly and I went to film with her for Battlefront, we spent most of the time being gently reminded by the crew that this was supposed to portray the severity of life on the list. It was hard as Jess' nature was to laugh and smile, and we all kept giggling and gossiping. We did get the filming done in the end and Jess' contribution to Holly's Battlefront episode - her frank portrayal of life waiting for lungs - was a vital one.

She reminded me what is important. Jess absolutely adored her family and her friends, and would tell people that they were special to her. When she decided to do something, she got on and did it, never mind whether it was practical, easy or virtually impossible. I think post-transplant, it is easy to loose some of that spontaneity, to forget to tell people regularly how much they mean to you. I intend to remember that.

I am definitely struggling with survivor’s guilt. I know it’s not uncommon and I’ve felt it before when losing friends with CF, but it’s pretty full on at the moment. Why on earth am I so special that I got this magical chance? I know the answer of course; it’s because there is no rhyme or reason. Just because Jess gave and gave and gave and fought harder than was probably humanly possible...effort sadly does not guarantee who gets the winning hand. Our paths were so similar in so many ways; both pretty stubborn, both fairly high-profile fights, then she decided to do the Hydro Active... I felt like she was a younger version of me. Perhaps because of that, I had a naive subconscious belief that she had to make it through, because I did, so it was only logical. I hate that I was lucky and she was not. I told you, my blog, my ramblings. My thoughts are with her incredible family and those closest to her; I cannot imagine just what they are going through.

Jess fought for what she believed in. She believed very strongly in organ donation, so instead of sitting around she got up and fought. And never ever stopped. Ever. That’s my biggest lesson; to live and laugh, to love those around me, and to fight for what I believe in. And to never, ever stop.

www.justgiving.com/jesswales

Images courtesy of Holly Cocker - thank you Holly x

2010-01-14T14:53:00.007Z

I think most of you have heard the heartbreaking news about Jess, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will.

This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is here. She actually keeps two blogs, the other one can be found here.

Reading her post about sharing her story publically got me thinking. Particularly this bit:

When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register?

I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think this month gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger?

Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?

Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.

I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.

Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.

My next blog will be about Jess. I just have to find the words.

2009-12-31T09:51:00.008Z

Firstly, Merry Christmas everyone! I hope everyone had a Christmas full of laughter, fun and merriment.

I had a wonderful Christmas; our family have these traditions which we’ve done since I can remember and which are described beautifully by my sister here. It’s very much a family affair, which I love, and which I feel Christmas should be. However this blog isn’t really going to be about me, it’s going to be about Jess.

The week before Christmas, Jess was admitted to hospital through her local A&E. She was a poorly girl, and as we got closer to the 25th, it became apparent that she would not be well enough to return home for Christmas day. Following a long chat on the phone, Sarah and I decided that if she couldn’t go home for Christmas, Christmas would have to come to her. We contacted as many of her online friends as we could (in a short and hurried space of time) and donations came flooding in. People wanted to contribute to Jess’ Christmas day; I think the unspoken but shared emotion was that it could well be her last.

I met Sarah, along with her girls Hope and Ellie, up at the hospital, with bags of beautiful decorations, luxury food items, and presents, all paid for by caring folk from the CF and Transplant communities.
Jess' pink purple sparkly Christmas tree

Fairy lights and Christmas nibbles.

There’s a little video that you can view here (if you are a facebook user) of us decorating the room.

Jess really was a very poorly girl, and a few days after Christmas, I got a phone call from her mum saying she had taken a turn for the worse. Four and a half years of waiting and her body was running out of steam; we were out of time.

That night, something incredible happened. Somewhere out there, a family suffered the unthinkable and lost someone they loved. And at that moment, in that time of grief, they decided to consent to their loved ones organs being donated. Jess was called, and the transplant went ahead. I suspect if it hadn’t, I would have been making some very hard phone calls to our mutual friends over the next day or so.

As I have mentioned before, I am not religious. I do not believe in prayer (although I very much appreciate why people do it; feeling helpless is pretty horrible), but I do believe in the power of people. I think it is incredible that so many people have shown so much love and caring for Jess, and have fought for her and along side her all this way. I think it is magical that people at such a horrific time of grief can be big enough to think of others and to hope that through their personal tragedy, some good may emerge. I think it is astounding that Jess has managed to fight this hard, for so long, and survive the impossible. I think people are amazing.

It is very early days for Jess, and she still has a long way to go, but there is a shared feeling of relief all round. She now has a chance, the chance that she’d desperately hoped for and clung on to. All thanks to someone quite ordinary, who never met her, who chose to do something amazing and signed the Organ Donor Register.

Wishing you all a happy and healthy 2010, with one final quote which I look to again and again and will continue to aim towards next year:

"be the change you want to see in the world."

2009-12-08T11:32:00.005Z

So that was back in 2005. Now to last Friday’s events...

The evening was in support of the Millennium Mum’s campaign and invitees were various very active twitter folk (don’t know what twitter is? Check it out, this is my profile). I had my recorder class that afternoon (teaching not learning) and the kids were very over-excited when I told them just why I was wearing a posh frock and suit jacket. I met Sarah beforehand and we walked through the gates together and up to the door of number 10. The sign had been changed to mark the occasion and the Christmas tree was beautiful.

The Love Actually representation of Number 10 is actually fairly accurate! We queued up to get our name badges and I was a tad over excited to see various celeb tweeters on the guestlist. I was pretty determined to network as much as I could (why waste a good opportunity) and so moved round the room chatting to various people. Oli Barrett – Holly’s mentor for her Gift of Life Battlefront campaign was there and did a fantastic job of introducing us to as many people as he could (Thanks Oli!).

We were mingling and chatting when there was a clinking of glasses and shushing as Sarah Brown stepped forwards to talk. She thanked everyone for coming and explained about the Millennium Mum’s campaign and why she was so passionate about it. She then told the assembled that one of the guests was very kindly going to sing for us – the fabulous Beverley Knight! I hadn’t even realised she was there at this point immediately sought her out to thank her for her support in retweeting pretty much every message we went out about the Save Jess campaign. She was lovely, so down to earth, and we chatted for quite a while. She sang “Shoulda Woulda Coulda” and “Gold” with just a piano to accompany her and it was incredible; it brought tears to my eyes. She spoke briefly in between her two songs of her love of twitter, and mentioned the Save Jess campaign then! The woman is a legend.

It was so lovely to get to chat to Sarah Brown and show her how well I was doing. Later on in the evening, Gordon Brown joined her and looked genuinely delighted to see me standing and chatting and looking so well. We had a pic taken with them which amuses me greatly as I think it looks like a family photo!

We chatted to lots of other people including Location Location Location's Kirstie Allsopp (who has been tweeting about organ donation today) and Brian Friedman - X Factor choreographer - (who was really lovely and showed us his US driving licence which has a clear orange circle saying “donor” to mark his wishes – made me think we need a similar clear marker on UK ones...)

The biggest highlight for me? The fact I was standing up, I was walking around chatting and laughing and the only things to be aching were my feet. Whenever I return to somewhere or something I did with my old lungs, it reminds me just how far I’ve come. I’m such a lucky girl, I really really am.

All images courtesy of http://twitpic.com/photos/sarahbrown10

2009-12-07T16:31:00.004Z

"Can you take me to Downing Street please?" I said as I jumped in the cab at Waterloo. The cabby, clearly somewhat disbelieving repeated it for confirmation before we set off.

Yep, it's time for me to blog about last Friday evening, when I attended the Downing Tweet Christmas party hosted by Sarah Brown. I am incredibly slow off the mark here as Sarah and Holly have both already written fabulous blogs about this. First of all I want to take you back to November 2005, which is the first time I went to Downing Street, that time, to number 11.

I'd been asked by the CF Trust if I'd do a speech at their 40th anniversary do which Gordon Brown would be hosting at number 11. I was hugely over excited and had bought new shoes and everything (well in advance - a rarity for me) when the week before my already poor lung function took a dive and I was admitted to the Bristol Royal Infirmary. I was feeling really pretty rough, and requiring oxygen throughout the day, something I'd never needed before, but my wonderful team listened to my pleadings (or rather demands) and promised me they'd get me well enough to do my speech.

Everyone worked so hard to ensure I'd be able to get there; oxygen cylinders (a new addition to my entourage at this point) were ordered, taxis booked and a wheelchair borrowed. A day of complete bedrest ensued, followed by tiring and slow attempts to put on my clothes and sort out my hair and make-up, having to sit down at intervals to catch my breath. I was exhausted by the time I was ready, and promptly fell asleep in the taxi, the oxygen helping me catch my breath as I dozed. We picked A up en route and went straight to Downing Street, where Taxi driver and A were searched (amusingly I wasn’t – I can only assume it was a moment of PC going too far) and we were ushered into number 11.

Being new to the whole concept, I refused to take my oxygen in with me and left it in the taxi (how reasonable). I stayed seated as much as possible and did a lot of listening to people chat, in order to conserve my energy ready for my speech. When it was my turn, I stood, somewhat nervously, at the top of the room, Rosie Barnes on one side, Gordon Brown on the other. I cannot remember the speech I made, but I do know that it made people cry. That is the design of my talks; to hit people hard, people who have no experience of CF, and to make them see just why these funds are so vital.

After my speech, I quickly located my chair so I could sit down. People were congratulating and thanking me and there were so many interesting people to talk to but my chest was aching and I felt so tired. In all honestly I was relieved when it was time to go; as soon as I got to the car I grabbed my oxygen and felt my lungs relax as the effort to breathe was reduced. It was an incredible but exhausting day, one which my mind desperately wanted to participate in, but my body did not. I fell asleep very quickly and slept all the way back to Bristol, where I was returned to my hospital bed. I never dreamt I’d get to go to Downing Street again, and how different an experience it would be with lungs that work...

2009-12-03T14:32:00.002Z

Rediculously quick blog with only one real point to it.

A very nice guy called Rob contacted me last month and asked if he could do a 3 minute documentary about me for Channel 4's 3 minute wonders. It was for entry in a competition they're running called "It's good to know..."

The film is now finished and up on 4docs website. It is deliberately hard-hitting so just be warned before viewing! If you can, pretty please can you register so that you can "love" it (by clicking the tab with the heart next to the screen) - the more love it gets, the higher up the list it goes. The winning documentary will be shown on Channel 4. You can view it by clicking here. Massive thanks to everyone who has already viewed and sent such lovely supportive messages; I really do appreciate it.

2009-11-25T15:29:00.004Z

OK so I actually do have a good excuse for not writing this time.

I've been in hospital. It feels a bit weird to write that, and it was even weirder being an inpatient again. I mentioned bits and bobs about not feeling right, naughty left lungbehaviour and paranoia but I will start from the beginning....

Just over a month ago, Dr C noticed a slight shadow on my Xray. I didn't think much of it but he said I had to come back a month later to have it re Xrayed. The week I was due to return, I started coughing more, feeling a slight crackling sensation in my left lung, and generally not feeling "right". I tried to vocalise this to the SHO as best I could ("something isn't right" isn't the most clear description really). I had no obvious symptoms; my lung function was steady and my X ray actually seemed clearer than the last time so whether it was to humour me or not I don't know, but she decided put me on Oral antibiotics and sent me away again.

I followed the course like a good girl but was just feeling worse and worse and then last Monday decided to concede defeat and booked another appointment for the Thursday of that week. I was still torn between thinking I was paranoid and knowing deep down something wasn't right. On arrival, I did my lung function which showed a drop of over 30% (down from my normal 80 odd percent to 50%). It was a bit of a shock to see it as it just felt so sudden; even back in my CF years I tended to have gradual declines rather than large plummets.

I was pretty scared if I'm honest and not overly surprised that they said they'd be admitting me that day. Since orals hadn't worked I was told we'd start IVs that evening as they were pretty sure I had a chest infection. It was so bizarrel being in hospital, back on IVs....drips and cannulas, hospital bed and hospital food, blood tests and wristbands....all these things used to be a regular part of my monthly activities but I haven't been back in hospital for treatment since my transplant. I have decided that having a transplant definitely makes you more of a wuss when you get poorly. I tried to keep fairly good humoured about it really, as things could be a hell of a lot worse. I also experienced a good strong dose of guilt throughout my stay; what the hell did I have to feel sorry for myself about? When there are people like Jess, like Tor, who are fighting hard every day still the other side of transplant?

The plan was that if my lung function didn't improve in any way shape or form by Monday, I'd be having a CT scan and a bronchoscopy - where they put a camera into the lungs and take some tissue samples for biopsy (to look for rejection). The dreaded 'R' is always a bit scary to hear so I focused on the "it's definitely an infection" bit. Which luckily for me, it seems to be; my lung function on Monday had gone up significantly so the IVs are working, and I'm thrilled to be back at home once more to finish the course.

I am feeling a little rough and washed out from the IVs, but as I say, I really do feel bad about whinging because I definitely know things can be a lot worse. And IVs used to be so routine for me, as did hospital admissions I suppose....I'm just so used to being well now, it came as quite a shock.

I shall try and be good and take things a bit easier till I finish IVs. I shall also try and stay away from further infections and out of trouble. Can't promise though...

2009-11-08T10:44:00.002Z

The past week has flown by (as has the weekend, apparently). It's lovely being back at school; the fact I love seeing the kids so much when I get back reminds me I am in the right job.

Health-wise, I'm still not quite happy about naughty lung behaviour, however am beginning to wonder if I'm just paranoid. Lung func is ok, X-ray was clear...it's just a feeling (as well as the gurgly cough which is still there). It feels wrong to complain about it as it's really nothing compared to what poorly folk waiting for transplant go through on a daily basis. I think it's just that post transplant, I am more anxious about the smallest twinge or change. I'm sure it's fine (clearly talking to self here rather than anyone else...)

Things are moving steadily along LLTGL wise now the manic-ness (it's a word) of Save Jess-tival is over. Jess had to have her end of life talk last week. It's something that the team have to do when you get to the end stages of CF as whilst there is definitely still hope of a transplant, it is only fair to talk through the other possibility. I remember mine so well; mine was actually done after my massive pneumo that nearly killed me. It was essentially a talk to enable me to plan what I wanted to happen if we reached the end. It was a hideous thing to have to go through but I take my hat off to the team member who sat and patiently talked to me and listened to me for what felt like hours, as I asked them endless questions and went over the same concerns again and again. They were so patient and so helpful, and I actually felt a lot better after that; I felt that even if the end came, I would be able to retain a small amount of control. My heart aches for Jess having to go through these discussions and plans. It's so very difficult to face and it makes everything seem a lot more real.

Please keep helping LLTGL spread the word; we're always looking for volunteers and fundraisers so get in touch if you could help! A bit deep on a Sunday I know, but for some reason I've been thinking a lot about back then recently and needed to get it off my chest. (I've always loved how wonderfully suitable that phrase is for CFers).

Keep on shouting about it folks; knowing people are behind you every step of the way is hugely helpful when you're fighting for every breath, and Jess, we really all are.

2009-11-02T08:28:00.003Z

It has been the longest blogging break in the history of mankind.

OK well not quite that drastic, but it's been pretty lengthy, even by my standards. I am, however, still here and fine. Woo!

Quick summary of life over the last few weeks methinks:

Firstly and clearly most importantly, Save Jess-tival was awesome. It was a huge success, thanks to the hard work of Sarah Milne, the LLTGL Trustees, Oli and various other fantastic helpers who worked their socks off before and on the day to ensure it all came together. The LLTGL blog will be updated soon with pics and details of the night so watch this space!

It was then the last week of half term, which was incredibly hectic with various performances in all schools, but all went well (thank goodness). Towards the end of the week, I started feeling a bit groggy and my left lung decided to start playing up. I have no idea why only the left one chose to misbehave, it may well be attention seeking antics however I will not be buckling and shall merely be referring to the naughty step (also known as Harefield) for any further bad behaviour. There's just generally a bit of chestiness and wheeziness going on, and being so used to being so well, it was quite frightening. Luckily on Monday I went to Harefield and came away with some antibiotics which are predominantly to cover all bases, since tests (X ray, lung func etc) were actually pretty good.

On Tuesday I went up to London for a photoshoot for Company Magazine. It was great fun as it was the first shoot I've been on where all your hair and make up are done for you and a vast selection of clothes are presented to you to wear for the occasion. The article will either be out in the January or February edition; I'll keep you posted.

Wednesday saw the pre-launch of the new NHSBT campaign. It was officially launched today; take a look at their website to see the vastly different and much more hard-hitting angle they are taking. I would love to hear what you think so please do leave your opinions in the comments section. I attended the launch and was asked to speak about my experiences to the assembled guests. It was a very interesting afternoon and I felt very honoured to have been asked to speak.

Then A and I went up to Derbyshire for a few days, to have a bit of a (much needed) break and to visit my wonderful Grandad. It was a really lovely few days, Derbyshire is one of the most beautiful areas of the country.

I was going to write something about "where has half term gone?" but I think I've answered my own question in the above. Am now off to do some LLTGL work to follow up this new campaign. I really really hope it has the desired affect...we know that softly softly hasn't worked, will this be the angle that jogs people into acting and signing the Organ Donor Register?

2009-10-12T12:59:00.002Z

OK, some more answers for you fabulously inquisitive folk, but before I do, a quick plug to go to www.savejess.org.uk and buy those tickets if you haven’t done already!

So, back to the questions, some of these were posted on Facebook, in case you’re wondering where the original questions are:

Why do so few transplants happen and what can normal people do to help the success rate?
I wish there was a simple answer. I think it’s a combination of things, one of the biggest being the lack of donors. However there are many other influences including lack of resources and infrastructure, the need for improved donor management (which links back to resources) to ensure that organs are kept in optimal condition during retrieval and transit, and the fact that transplantation is so very very specialised. Transplantation is not yet a “norm” and until it is, these problems will continue to exist. But I do genuinely believe that one day, the UK will see transplant and organ donation as something that is just part of society and of life and death.

You’ve settled into a new house and job and are still into campaigning. What else would you love to do, other than have your own talk show of course? ;-)
To stay here and keep on enjoying every second. That is honestly my greatest wish (other than to be crowned queen of everything, clearly)

You keep your life with Adam private but can you tell us three great things about him, apart from the obvious ones.
His ability to see the bigger picture, his way of knowing without me saying, and the fact he loves me for being me.

I want to know what keep A going through your darkest moments?? Please don't feel you have to answer this I know it's not about you and A is a very private person.
I did actually ask him about this following this question. He said it’s difficult to answer as everyone is so different therefore the way people handle things are going to be so different. A big thing was definitely keeping his own life going, and I firmly believe the fact he kept a sense of “self” throughout was vital, especially if things hadn’t gone the way they did. I don’t know how the partners of PWCF do it really, and after co-writing this with Jac I was left even more in awe. Which is probably daft as I know people say the same thing about CFers and marvel at how they keep going. I’m rabbiting, I shall stop.

Do you find it hard doing all the tx awareness raising? Do you not sometimes just want to fade into the background and forget about it all?
Very interesting question. When I got my transplant, a lot of people gave me advice on the fact I would probably now want to drop all awareness and shed as much of my post-transplant identity as possible, so I was fully prepared to feel that way. In fact, I’d say I almost feel the opposite. I have a bizarre sort of fear that I will one day forget what it was like to be that ill. I don’t want to forget, I want to always remember what it was like to ensure that I never forget how lucky I am to be how I am now. The first time I realized I couldn’t physically remember the feeling of struggling for every breath, I panicked. Of course I remember it all mentally, but the physical feeling of it plays a strong part and my body finds breathing easy now, those feelings of struggling replay to me as if from a film; like watching someone else experiencing them, rather than myself.

I am who I am now because of everything that has happened to me, and I personally feel that it is vital to embrace each and every experience I’ve been through. I am not religious, nor do I believe in fate, but I do believe that my transplant is a gift and that I do have some responsibility to use it to help others get theirs. I don’t even feel this is a moral responsibility, just something I have to do. And want to do, more importantly. Maybe it helps me tackle survivor’s guilt, I don’t know. But I love what I do, and whilst I love it I will keep campaigning. It’s a massive part of my life, of me, and of who I am.

I was wondering if you've done any singing professionally or in a band or anything as you seem to have a good voice?
This one made me smile, because I don’t have a particularly good voice (not fishing for compliments here so don’t comment if you’ve heard me sing!) I am, however, very practiced and love singing harmonies, I’d say that’s where my strengths lie. I much prefer singing as part of a group, but I enjoy passing on knowledge of techniques to others, which is obviously where the teaching comes in. It’s a love and a skill I’ve developed rather than a natural talent, so no, very little performing (other than in choirs and groups).

What's your favourite film? And why?
Very tricky one. It depends what mood I’m in (what a cop-out!) I do love Richard Curtis films as I love his observations on people and society. I am also a big fan of Dogma. But one of my all-time favourites has to be It’s a Wonderful Life; my sister has written about it’s link with our family in her blog post here.

I wanted to ask - how has your transplant has affected those around you, your siblings, parents and your hubby?
That’s a very interesting question too...from my perspective, the main thing it has done is lift a whole lot of worry off their shoulders. When I was ill, a lot of life revolved around me. It couldn’t really be helped as whenever anything was planned, thoughts that would crop up would inevitably include “Will Em be ok? Is she coming with, if so, how, and if not, who’s around to ensure everything’s fine? Can I get back if there’s an emergency/she gets her call?” etc etc. It’s so wonderful now to get a phonecall from a family member telling me excitedly that they’ve just booked a holiday, no secondary thoughts of concern or worry. Life has normalized drastically, that’s the biggest change I see. But for a more accurate answer, I shall have to appeal to any family readers to insert their opinions in the comments section.

Has your transplant affected your relationship with your husband? Since you used to be so poorly and dare I say dependant on him and now you are equals so to speak?
Good question Gem, (congrats again btw) I think we were quite careful to ensure our relationship always remained a relationship. It was very important to me that he never fully became my carer, although, inevitably, a lot of caring was done and I was hugely dependant on him as I was everyone around me. My personal view? We’ve adapted rather well. We can be a normal couple, do normal things and I can participate in everything – yes that means the cleaning and the washing and taking out the bins as well (dammit). Maybe this was helped by the fact I always remained fiercely dependant in mind, if not in body. To the extent that Christmas 2006, just days before my transplant, I sat on the sofa giving cross instructions to my poor mother and husband who attempted to decorate the tree in the way I wanted it done. I think this links back to the other question about relationships and coping; everyone is so very different in the way they handle things, but for me, me staying “me” and him staying “him” was hugely important, both at the time and thinking of what may lie ahead.

Can you pinpoint the exact moment that pink became such a focal point of your life?
It was definitely around the time my health started getting worse. I used to be quite a grungy teenager (honest!) and was very much into black items of clothing and baggy jeans, although I always accessorised with sparkly rainbow coloured stuff, even then. As I got increasingly more dependant on others I found the princess analogy helped me come to terms with it. I think the pink thing tied in with that. Also, you don’t feel particularly girly and feminine when coughing your guts up, it may have been a bit of a counter-attack on my that. Or it may have just been that it’s a girly, cheerful colour. It makes me happy.

Can you still ride a bicycle? I tried and I can't :D
Do you know what, I have no idea. It’s going on my to do list.

2009-10-06T16:14:00.002Z

Taken from the LLTGL Blog:

We are very very excited to announce our upcoming ‘Save Jess-tival', a fantastic night of music and comedy to honour our wonderful Jess and to encourage people to "think about it, talk about it and do something about it" (organ donation that is!)

Our headline acts are: stunning singer Natalie Imbruglia, and Canadian comedian Glenn Wool and Mock the Week favourite Ed Byrne, with more to announce later in the week.

This star-studded fundraiser will place on the evening of Friday October 16th at The Village Underground in Shoreditch, London. Doors open at 7.00pm.

Tickets are available NOW! Click here to buy.

For more info on our 'Save Jess' campaign, please visit http://www.savejess.org.uk/

All proceeds go to the Organ Donation Charity Live Life Then Give Life, of which Jess is an Advocate.

WOOHOO!

2009-10-04T16:45:00.005Z

Check me out, I’ve made a start on the questions! There are quite a few (I don’t mind, I’m finding it really interesting to try and answer them!) so this may be several instalments.

What job are you doing at the moment, you talk about it but never really said what it is?
I’m a teacher. Sort of. I started last year when I was asked to start up a school choir at a local school, and it was a massive success which threw me into singing, music and education. I now teach at several different schools, doing some music and some vocal coaching. I absolutely adore it; with kids you never have a dull day. I also find it vaguely amusing that my job relies heavily on my lungs and breathing. I work part time (well, I try to work part time) as I have lots of LLTGL stuff to do as well.

When you were a student in Bristol where were your favourite places to party?
I wasn’t really that much of a party person! I think because by the time I was in second year my lung function was in the 30% range, I didn’t go out for wild nights very much. I did however love evolution (was that it’s name?!) where the DJ would play Sit Down and all the Bristol Uni students would sit on the floor leaving the UWE students standing (healthy rivalry. Honest.) Our favourite hang-out was a little dingy old mans pub which had a beer garden and patio heaters. And cheap drinks.

OK... how about what's the achievement in your life you are proudest of? And what's the one thing you want to do next more than anything else goal wise?
I think my proudest achievement is probably LLTGL. Em and I invested so much blood sweat and tears into it from the beginning, and to see it flourishing with such a fantastic team is a very proud moment indeed. Aims and goals? To carry LLTGL on to an even bigger and better future, but mostly, to squeeze every little drop of joy out of life and take everything it has to offer. And drink it up all thirstily and get my money's worth ;)

What's your favourite book ever?
My Family and Other Animals. It’s a wonderful, wonderful book that I’ve loved for many years, and return to reread whenever I’m at a loss of what else to pick up or if I’m feeling down. Close second is Life Among the Savages. Read both, they’re fantastic, and both very funny. I also love Morrie in his own words: a very very different kind of book but one I found very valuable when ill and asking myself big questions about life and death.

What is your lung function post tx?
Shockingly I am not sure of the exact percentage. It’s around 80% I believe, slightly lower that many because of the scarring caused by the infections post transplant and the fact that I have no working diaphragm.

How do you feel about having children post tx? Is it a complete no-no for you? I am listed for transplant, and its the one thing that scares me, the thought of not being able to have kids, and what any potential future husband will say about it...would be interested in your view, thoughts or feelings.
This is a very difficult question for me to answer as it’s very personal. Firstly, having children post transplant is not a definite no, I know post transplant CFers who have gone on to have children and who are still around. However there are risks, very similarly to having kids with CF really.

I’ve always had quite strong feelings about bringing children into the world when your own world is not very stable. Pregnancy and then looking after a child put huge strains on your body, ones that could cause harm to you, and potentially the baby. It’s a difficult question, at this time I feel that’s all I can say. But for the person who asked it, it’s not a no-no, and don’t forget there are other options, such as adoption and surrogacy. Try not to dwell on it as there’s every chance bringing up a child be a possibility for you. Somehow.

Before your transplant you seemed as positive and upbeat as you are now (I'm a complete stranger and I was sad/worried for you-but hopeful!). With everything that your CF came with, what did you do or what made you keep so up beat and positive?
Interesting question! I think it was people. I wrote this blog about optimism and genetics when I was very poorly. My fab family and other people I was surrounded by wouldn’t let me get down, or they wouldn’t let me wallow anyway (everyone is allowed a good cry every now and then). People were what kept me going. People close to me, people I’d never met, people who just wanted to make contact, people who had known me for years and kept the “me” part going under all the illness. I think my belief that people have the power to be as happy or as unhappy as they want to be helped; not always, obviously, but a great deal of positivity is about perspective. You can focus on the good or focus on the bad. That doesn’t mean life is that damn simple, but it means you have some control over where you focus your energies. I have always been lucky to have a lot of good going on in my life, but I pride myself on the fact I worked hard to keep the good times going, and to stay focused on them and committed to enjoying each day, just in case it’s my last.

What was your honest expecations in terms of a) actually getting a transplant and b) life after it if it did come?
My expectations of getting a transplant definitely changed along the way. At one point I was absolutely positive I would (I just knew it – that was quite early on) and at one point I knew I wasn’t going to be one of the lucky ones (that was the night I was dying and the family had to come and say goodbye.) The (as it turned out incorrect) realisation that it would never happen for me was really just one of huge sadness and disappointment, but on a scale that you can’t imagine. I wasn’t angry, just very sad. As for life afterwards...I didn’t really let myself dream about it. I figured if it got to the end and I’d imagined all the possibilities and then they never materialised, I’d be even more upset...even more upset about dying than just upset then, god knows where that logic came in! It was part of my “focus on the now” mentality, to try and keep me enjoying the good things that life had to offer at that moment. About 8 months after my transplant, my mum and I were talking about the difference and she said that she still couldn’t quite believe it. She knew we were going for transplant as it would keep me alive but she never imagined in a million years just what a transformation it would bring. My hopes of life post transplant were teency in comparison to the life I’m privileged enough to lead at the moment.

Those are the first few, will work on the rest. I promise :)

2009-10-02T13:30:00.004Z

I am going to answer your questions, I haven't forgotten...in fact I have made a start. Some of you have challenged me....it's harder than I thought!

And I am going to blog, honest. But things have been, well, rather busy this week. Hopefully should be able to explain fully why next week, but for now if anyone has any media/PR/agent/celeb/musician/comedy contacts, please can you get in touch with me asap.

Ta muchly!

2009-09-19T10:46:00.002Z

Stolen idea from fellow blogger Becky (who keeps a blog about her life as a mum to 2 children with CF)...

Q & A.

Ask me a question. Ask me more than one if you like. Anonymous questions are fine (as can be posted on my blog, for those of you who are reading this in note form on FB it's www.pinkandsmiley.blogspot.com ) and do ask me anything (although I don't guarantee I'll answer anything, even a pinkandsmiley loud mouth has some privacy, honest!)

You have 1 week to question me about life, CF, transplant, LLTGL, me myself and I, all of the above....or anything else for that matter.

go!

2009-09-17T19:14:00.004Z

Feeling a bit helpless tonight.

Jess has had a rotten day, which resulted in her being rushed to A&E and from there being transferred to ICU. She is now on the main ward and doing a bit better.

I remember this bit so much. Well actually I can't, I was never as ill as Jess I don't think....well my lung function never went as low as hers if that's any judge. But I remember my last few months of waiting. The effort it was just to keep on breathing. It felt like I'd been walking for months and months with no rest and that one more step felt like such an impossible task...only I wasn't walking, I was breathing. And you can't take a break from breathing.

I know what's keeping Jess going. It's hope; the hope of a transplant, of a new life, of being able to breathe. And people - people kept me going so much. Oh and stubbornness (a fab trait to have when all the docs shake their heads at you).

I don't know what to do. The reality is, there is nothing I can do. I can wish as hard as I can, try and be there for Jess, I can shout about organ donation, I can push myself even harder to try and spread the word. But all that can save Jess is that call. She needs it now. To be honest she needed it yesterday, but now will do. Please.

Who am I talking to? I don't know. Want to do something? Repost this. Or post something, anything, about organ donation and how to sign up (and why) anywhere you can.

Thank you.

2009-09-07T15:31:00.008Z

This is going to be a long blog, as Sunday 6th of September was a long (but very wonderful) day.

2006

2009

The lady in the blue hoodie in the first shot and hugging me in the second is Hannah. Hannah was my physio when I was in hospital training for the 5k back in 2006. Hannah was the one who would come and see me several times a day, would help me mobilise and build up my distance, and who walked with me and another wonderful physio called Vicky, to the finishing line.

So why when Jess announced she was doing the 5k I didn't realise Hannah would have something to do with it, I don't know! Seeing Hannah there was hugely emotional, the last time I was in that park with her I was in Jess' position. It really brought it all flooding back to me, especially when she said "I never thought I'd be walking alongside you like this" whilst hugging me.

From the moment I walked onto the field I got very emotional. I always do; the Hydro (as it will always be to me) holds so much significance, and everyone there is full of spirit and determination, doing it for a good cause, doing it for someone they love, doing it for someone they've lost.

Anyway enough about me - I know this is my blog but I'm writing today about Jess' achievement. She did amazingly. She was all clad in neon and smiling constantly.

She looked somewhat nervous and was quite quiet (doing a much better job of not using up all her puff than I did) but extremely determined. Several members of Jess' medical team from Kings were there walking with her, some running ahead to complete their own personal challenges.

Jess was aiming to walk 200m out of every kilometre. She did it (I don't know how) and did it with great style, and in fantastic sunglasses. I've made a video here from footage I took yesterday. I don't mind admitting I cried whilst making it and cry when I watch it back. I so want Hannah's words to be true. They have to be true.

I also got to meet Liz and Jan, a wonderful pair of friends who you can read more about on Holly's blog. Walking 10 weeks after their ops? Pretty damn inspirational. Speaking of Holly, massive thanks go out to her for taking these amazing pictures.

I struggled slightly during the race - partly due to falling down the stairs in the week and bruising various parts of my anatomy quite spectacularly, but to be honest was pretty focused on watching Jess and willing her on. Crossing the finishing line was extremely emotional, and I brushed away the tears whilst whooping with joy and jumping up and down (which is why it appears as if the cameraman has fallen over on the video at this point).

After congratulating everyone and telling Jess to go home and get some rest, I set off for Croydon to support the wonderful Lou. Lou was doing her sponsored tree hug that afternoon and I was determined to get down there and be there for her. A 2 hour tree hug might not sound like much, but when talking makes you breathless and your arms and legs have virtually no muscle mass, it's a huge challenge.

Lou did fantastically well; it was hard work, and she was in quite a bit of pain by the end, but she clung on for dear life. I have some footage of her too and will be editing it and putting it up soon. I am just glad I was able to be there with her, cheering her on.

I am not feeling great today as a result of lots of rushing around, but I am pretty sure that's nothing compared to how Jess and Lou are probably feeling. They did so incredibly well, it's spirit and determination like that which is why both ladies are still here, after all they have been (and are still going) through.

Told you it was a long blog. But a good one I think. Hurrah for fabulous girls achieving huge amounts and rocking muchly.

2009-09-04T08:51:00.004Z

There haven't been many blogs about me recently. Mostly about what else is going on. This is for a number of reasons, but the two primary ones are that I do rushed blogs now and also that nothing that interesting is happening with me!

Health is good. Really good. To the extent that my last visit to Harefield was back in March. I am going up there at the end of the month for a checkup; I just phoned and begged to change the appointment as I have been booked for a talk up in London to quite a powerful audience on the original clinic date, so I don't want to change that if I can help it!

The thing is with feeling so well and "normal" is that I get used to only having to do normal things. The phone call just now brought with it quite an uncomfortable realisation that I haven't been to my GPs to have my bloods checked recently (oh dear, will be in hugefat trouble and deservedly so). When real life is all that takes up your day to day, it becomes harder to remember (or accept) when you have to step out of it. This is all hugely positive, incidentally.

I have been asked to attend an occupational health appointment in relation to some work I'm doing, which, in a calm and reasonable manner, I was instantly infuriated by. But why on earth should I be?! It's for my own protection as well as the employers, and one would imagine that with my, somewhat extensive medical history, they'd err on the cautious and request one. But my instant reaction was one of "there's nothing wrong with me!" which is interesting, and also rather nice.

A and I have been in our gorgeous little house for a month now. I love it. Very much. People used to say to me "being normal isn't all that you know, what with bills and work and responsibilities..." I think it's awesome. Honestly. Maybe that's just because I am constantly aware of how lucky I am to even be experiencing it.

2009-09-01T15:18:00.003Z

Shortest of shortyshortshort blogs:

The Advocate weekend was awesome, predominantly because the Advocates themselves are awesome. You can read about it all on the LLTGL blog, on Lou's blog and on Holly's blog.

This Sunday I am heading up to London for the day. I'll be spending the morning walking alongside Jess, and the afternoon cheering on Lou.

Please take a look at their pages and consider sponsoring them, they're putting their bodies under a lot of pressure in order to raise money for LLTGL; I'm really very humbled by them both.

2009-08-21T14:13:00.002Z

ohhhh lordy.

Time has gone rather fast. How is it that during the school holidays I'm even less capable of keeping my blog up to date?!

This will be a brief one as I am madly preparing for the LLTGL Advocate weekend. I am hugely excited but a little nervous, as I've organised it so I really hope it goes ok and they get lots out of it. Some of you I know have read the other recent LLTGL news and I just wanted to say thank you for your lovely messages of support.

This week my lovely friend Mrs W and I disappeared off for a bit of pampering at a Spa. We were lucky with the weather (as demonstrated by the pics) and had a wonderful and very relaxing time.

Our little house is feeling well and truly like home. I adore it here and am so happy. I feel very much like we belong here.

Told you it was only a short one! Stay smiley all.

2009-08-06T17:25:00.002Z

I have had a rather busy and exciting week.

For the last few months, A and I have been working on getting our very own little home. I have, over this time, learnt that I do not like banks but that I am not quite as inept as I thought I was at all things money related.

A little while ago we found one. A little while later we made an offer. And on Friday, we got the keys.

It's been a truly wonderful experience. When we first moved in to our house with rosesinthefrontgardenandeverything, I wasn't really able to be a part of it, as we'd literally just signed the rental agreement when my lung decided I needed a 3 month vacation chez Brompton. By the time I came out (chest drain still in) I was in a pretty weak state and most of our stuff had been moved in anyway, and it was a bizarre and disjointed entrance.

This time I have been involved in everything. Everything from going in and sweeping and hoovering and polishing to helping move furniture. Well, actually it was predominantly standing watching the guys heave the sofa up the stairs trying to say helpful things and stay quite far out of the way.

When we gave the keys of our house with rosesandeverything back to the landlord I could feel the tears coming, but I managed to hold off till we were safely back in the car and out of view. I cried a lot. I do feel like I have left a lot behind in that house. So much happened there; various events and memories that one will associate with a home as well as some pretty key moments: my almost fatal lung collapse, LLTGL was first dreamt up in that lounge, Emmie and I sat on the floor sorting Tshirts and discussing plans, my call for transplant...then after transplant, A and mine engagement and then marriage....it's seen a lot that little house.

As I say I do feel like I have left a lot behind. Neither in a good nor a bad way. It's just a big change, another big step forwards, and some things now seem further in the past.

A and I are very cosy in our new place. It's still hugely exciting that we're in our very own little house, I don't think I can quite believe it, even though it already feels like home. What a lucky girl eh?

I haven't even felt the need to decorate everything pink. In fact I distinctly heard myself say to A "I'll have to get new towels, pink ones just don't go..."

I must be growing up.

2009-07-30T08:14:00.003Z

Is this the reason that Scotland has gone from having poor organ donation rates to being one of the leading regions in the UK?

London is one of the worst. That makes me sad and rather ashamed of the area I live in.

There was a lot of outcry when the Scottish Kill Jill advert came out. I happen to think that controversial/hard hitting might be where we need to head. What do you think?

Comments please...

2009-07-23T21:31:00.004Z

I've been a bit quiet recently.

(she says stating the obvious).

This was mostly to do with work being so busy. Which I did pre-warn about. I've also had a bit of a confuddled head. Heading out of the mist now.

I was sorting through some old boxes (for reasons that will become apparent soon!) and came across a batch of cards and letters. They were from when I had my rather hefty pneumo which made a good attempt on my life (but failed - ha). I was lost in memories for the next half an hour as I ploughed my way through every single one. It only took a few to have me in tears. People can be so giving, so generous, simply by taking the time to reach out and let someone know that they are in their thoughts.

The support and friendship I was shown at that hugely vulnerable time was incredible and I am still overwhelmed by it when reading them all again now. I think it was a very important time for me to rediscover them as I have been feeling uber-sorry for myself this last week, and revisiting the past was a hugely positive thing as it essentially showed me that I need to get the hell up and slap myself about a bit.

On this note of supporting those in need, I would like to give a little mention to Postpals. These guys are fantastic and I think it's well worth popping over to their website to see what they do.

I am now on Summer holidays (YAY!) so be prepared for slightly more frequent posting! Hurrah!

2009-07-07T12:31:00.003Z

This week is National Transplant Week.

Please do something. Do anything that might raise further awareness. Talk about it, get some stickers, get some leaflets, send an email, change your facebook status, tweet about it...Anything.

People like Jess, like Tor, like Gabriela, are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed.

Let's give them a tomorrow. Think about it, talk about it, do something about it.

www.lltgl.org.uk

2009-06-26T06:28:00.003Z

I have a sneaking suspicion that whatever my apologies and promises, this blog may well remain fairly rushed and infrequently updated until the end of term. Luckily (for me) the end of term is now less than a month away - woohoo!

Am v much looking forward to pausing for breath, although the reason it's been so hectic is only due to success so can only be a good thing!

There has also been another somewhat stressful (but exciting) thing going on however I don't want to blog about that just yet...

Oh and the big kids have not eaten me for breakfast (although one class has certainly tried to) and I'm mostly enjoying the challenge and learning a hell of a lot as I go.

One last thing (continuing in this crazy disjointed manner with far too many brackets) - Please please please could you check out www.lltgl.org.uk/mysisterskeeper and write to your local cinema. It would be fantastic if we could get loads of cinemas around the UK displaying Organ Donor awareness materials and you can help!

Stay smiley all!

2009-06-12T07:02:00.005Z

Gah.

Where did the time go!?

OK I am going to consolidate the past 2 weeks into a pacey and consise blog (ha).

Oli and I did some more filming with William's family. Sarah and his big sisters Hope and Ellie spoke really well about life with William before transplant, and about living in hospital and every day being so fragile. Wills ran about bursting in every now and then whilst we were filming, which was just a joy. We also discussed the Gifts of Life project which is going fantastically, so if you haven't done already, do go and have a look.
My youngest sister had a birthday which resulted in us three girls heading up to London to watch Sister Act at the Palladium (well done Abs for being born as we had a fantabulous evening).
LLTGL had a fascinating weekend which involved some amazing guys who had come over from the US to do some training with us. It's all part of our exciting new project which is currently being developed....more info to come on the LLTGL blog soon.
I nearly missed the above due to a chicken pox scare which resulted in various blood tests whilst they ummed and ahhed about my immunity; first result suggested I wasn't immune, lots of initials (IGG, IGM) were banded around and then a follow-up bloodtest at Harefield revealed that actually I am immune and it was a bit of a panic over nothing.
Work has been stupendously busy and will be even more so until the summer holidays as I have taken on some extra cover work (so if this blog suddenly halts it's because some pupils who are taller than me have eaten me for breakfast).

So life continues on in its bewilderingly rapid and schitzophrenic way....but all is good. I shall, at some point, sit down and write a proper blog that does not consist of bullet points. Honest. But just wanted to reassure one and all that I am safe and well. Life just gets in the way sometimes. How fantastic is that :)

2009-05-30T08:47:00.006Z

It's been another very busy but very good week. I've been on half term so obviously in my brain that meant I could cram three times as much into the week as usual. There's logic in there somewhere.

Monday was the most exciting day; a visit to the gorgeous Manoir and lunch in its 2 Michelin starred restaurant. It was my birthday present from A and it was an absolutely stunnning meal. We wandered round the grounds which are beautiful, and the vegetable and herb gardens (I never knew there were so many different types of mint) and generally had a wonderful wonderful day. I felt like a real princess.

On Wednesday night, Oli and I headed oop North to film Bethany and Gabrysia. There's an update about this on the LLTGL blog as well. Both families were lovely and so welcoming. It was wonderful to see Bethany so full of energy, bounding around and playing with Eloise. Her glowing skin and bright eyes was a brilliant contrast to previous photos I'd seen of her. It was lovely to see the whole family looking so relaxed and happy.

I found Gabrysia's shoot sad; Gabrysia is the most urgently listed person in the UK for a heart. Every single minute is vitally precious, and that was clearly evident in the incredible bond her siblings and her mum demonstrated. Watching siblings go through the transplant journey always hits me really hard. When I was ill, talking or thinking about my sisters in relation to worst case scenarios would inevitably make me cry, even when I was able to talk about myself without doing so.

I always love meeting transplant families so the whole day was lovely. It also reminds me how incredible my family was during that time; I've said it before but things return to normal so fast. I'm off for a family BBQ today and thoroughly looking forward to it. Am off to slather self in suncream so I can enjoy the sunshine.

2009-05-22T12:30:00.004Z

I know I know....

Completely lax blogging-ness yet again. Sorry. Life just never seems to stop at the moment. Well actually, I've paused today - first day off in weeks - and it's rather nice not to be traveling anywhere this weekend!

Last weekend I was up in Manchester to do some filming with Oli. We filmed the lovely Holly Shaw and also attended Team Ethan's fundraiser. It was a wonderful event; there was so much laughter and friendliness and warmth, but everything was tinged with sadness. The Collins family are just incredible; I don't really know how to sum up how much admiration I have for their strength and spirit. It was quite clear to see where Ethan got his ability to smile through everything came from. Oli has put together an awesome video of Team Ethan's weekend, which you can view here.

Whilst there, Oli and I had to stand up and speak. It was one of the hardest speeches I've ever done, as usually we go for the good old "look at this, this is what transplant can do, it's amazing" but of course that was not a possibility given the circumstances.

Jumping a bit (but it's related, honest)...there's some strange creature who calls herself "Kate" who has been raining down criticism on Holly, both about her Battlefront campaign and about her as a person (charming). "Kate" claims her biggest problem is that the whole story isn't being told, that transplants are not the miracle they are made out to be.

Firstly, whoever said they were a miracle? If transplantation was a perfect solution then anyone born with something like CF would be listed at birth. It's not perfect, it has risks, it has complications. But what aggrivates me about "Kate" and her opinions is that she is missing the whole damn point. Transplants are not offered to people who have other options; they are a last-ditch attempt at saving ones life. Not only that but my god is my quality of life 20 billion times better now than it was before. I didn't even realise how my illness affected everything I did until I was able to experience life this side of the looking glass.

For me though, transplantation holds as high a significance psychologically as it does physically. When I was waiting for transplant, I was able to keep going and to aim for things and to try and continue living my life (even by making tiny steps forwards). This was because I had hope. I had hope that this call would come, I had hope that I'd get a second chance at life, I had hope that someone out there would sign the organ donor register and in doing so save my life.

Hope is a huge thing and cannot be underestimated. Without that knowledge that I was aiming for something, I can guarantee I would not have lasted those 22 months. I was fighting for that chance, that hope and that's why (and how) I held on.

How anyone can suggest that because your hair can get thinner and you might get acne that having a transplant isn't worth it is completely beyond me. It just shows a complete lack of comprehension of the whole picture. Ethan's family are so movingly grateful to have been called, despite their sad ending, and their amazing graciousness makes me even more angry at people who make sweeping generalisations about how transplants aren't worth it.

A transplant offers hope. It offers the chance (sadly not the guarantee...not yet) of a new, better quality of life. It can save lives when nothing else can. And it is the most beautiful most precious gift anyone can give.

2009-05-12T09:28:00.004Z

WE DID IT!!

I would write a lengthy blog about it but have somehow thrown myself into a rediculously busy week this week.

So instead I shall cheat and link to Jac's blog.

I've only ever seen Jac face to face once before, and that was when she spoke at Scottish Parliament for us. She was extremely quiet, and sat very very still, two things which she is definitely not now ;) We talked and talked and talked and talked. And talked a bit more. And did a bit of walking as well.

I had a wonderful wonderful time and am so very very glad I completed the course. It was, most definitely, the hardest challenge event I've ever done (knees and ankle joints are still causing me grief), but I'm glad I did it. Massive thank you to Jac and her wonderful friends and family who made the whole event so enjoyable. And to the gorgeous Seb for following me around constantly to check I was ok!

www.justgiving.com/teamjac

2009-05-07T13:36:00.004Z

ohmygod ohmygod ohmygod.

This weekend I will be in Scotland walking along the coast. I am terrified. Not on my own though....with 170 others, all of whom are walking as part of Team Jac to raise money for LLTGL.

I'm looking forward to it hugely but that is nothing to do with the walking part, that's because I will get to see Jac and chat to her properly for the first time ever. WOOHOO! Last time I saw her was when she spoke at Scottish Parliament for LLTGL; she was looking pretty frail and her voice was very quiet due to lack of breath I'd imagine...I can't wait to see the difference.

Jac has worked incredibly hard to put all this together, if you take a look at her fundraising page you will see just how much organisation has had to go into all this! I am going to try and do some filming and take piccies so we can capture what looks to be a fantastic event. Please sunny thoughts for us all on Saturday!

This week has been very very sad as gorgeous little Ethan lost his fight. There are two beautiful articles here and here about him. All of us at LLTGL are totally gutted for him and his family; a truly inspiring and lovely little boy who, during his short life, inspired thousands to register as organ donors. His family are very much in my thoughts right now.

Ethan and his Robyn's Rainbow.

2009-05-01T09:48:00.004Z

Swine Flu.

It's everywhere. And I mean everyyyyyywhere. No not the infectious sort silly, the hype and the Media "round the clock, this may or may not happen" reporting.

I'm very torn on the subject. I actually think the UK is being very responsible taking it so seriously (better safe than sorry) but the media is annoying me somewhat. There is a lot of scare-mongering going on for something that has resulted in 13 deaths worldwide so far. Yes 13.

But it is natural that people are getting a bit concerned; news of a new flu virus is never really going to be good news is it?

For any transplant patients who are concerned, this discussion thread offers some useful advice.

I've come down with a beautifully well-timed cold, complete with swollen throat, aching limbs and everything. Tad worrying when on every single website you read there is advice about contacting a doctor with any flu-like symptoms, but seeing as I haven't been to Mexico in the recent...ever, I'll take my chances*.

Stay well and non-panicky folks!

*obviously contacting Harefield should there be a change in Lung func, as is the normal advice. I'm not that daft. Honest.

2009-04-24T08:00:00.004Z

Oops.

Well technically this is "after the weekend" - just quite some time after.

The Ball was fantastic. It was organised by Lorraine, mother of 2 boys with CF, and publicised quite widely within the CF community. Because of this, I was aware there would be quite a high percentage of parents of children with CF and other relatives of CFers, so I was more nervous than usual as I needed my speech to be hard-hitting yet positive. Erk.

A and I drove up on Saturday afternoon and arrived in good time for A to make use of the lovely Spa facilities. On his return to the room he informed me that everyone knew me (or new about me) including (by sheer coincidence) a lady who was not attending the ball but who was a journalist who I'd spoken to on several occasions.

We got ready (I may or may not have had a strop about my hair before deciding it was probably ok and I wouldn't shave it all off) and headed down to the drinks reception. I was overjoyed to see Suzie looking radiant and sat chatting to her and her friend. I sought out Lorraine who was in a gorgeous read dress and doing a very good job of not looking harrassed! We moved into the main room for the meal which was beautifully decorated and had a stage all set up ready for the live band which would feature later in the evening.

After the rather yummy dinnner, Lorraine and her husband spoke briefly to thank everyone and to explain how CF affects their family, and then it was my turn. As always with these things, what I actually said turns into a bit of a blur afterwards, but I got a few laughs (intentional - not due to failure to speak English I hasten to add) and quite a few tears, so hopefully it did the trick.

I then donned a sash to help with the auction, and went round shaking a bucket asking for people to empty their pockets and wallets of any loose change in a (hopefully) sweet and non-menacing way.

Money-relieving duties over, it was time to start dancing, and the fantastic Amy and the Aviators (who I'd thoroughly recommend) got everyone up from the first song and most of us stayed on the dancefloor till the very end.

All in all it was a fantastic night; I had great fun and it was lovely to meet some of the parents from the boards, and to chat to Suzie and Lorraine not in a muddy field for once! Bring on the next one...

2009-04-17T20:40:00.002Z

I'm off to Nottingham tomorrow.

I'm heading up there to attend a CF Ball, organised by a mother of two boys with CF. I'm doing a speech, and weirdly, I'm quite nervous.

I'm not exactly sure why; I think it's because I'm very aware that a lot of the people in the audience are parents of CFers. Therefore I want to balance it right and not give anyone sleepless nights! But at the same time the hard side of CF needs to be told to ensure that people understand why the money needs to be raised.

Don't get me wrong, I am also very much looking forward to it, especially seeing some familiar faces. And wearing my lovely green dress (woo)

I just hope I have aimed my speech at the right level and that the ball is the success it deserves to be. Will blog about it after the weekend, have a good one all.

2009-04-15T16:40:00.005Z

Jess is someone I've mentioned many times over the years. She is the feisty small blonde person with the infectious giggle and a survival ability which surpasses anything I've ever seen.

Jess was only 15 when she was told she needed a double lung transplant. Almost 4 years later, Jessica is still waiting.

She has managed to survive beyond all expectation and has doubled what doctors predicted when listing her. But not even Jess is superhuman, and I am getting very worried now.

Jess has had a lot of false alarms, where the transplant could not go ahead due to a problem with the organs. Very recently, she got called again....and was too unwell to undergo the operation.

Jess is now back in hospital, and the team are fighting hard to get her well enough to undergo the operation hopefully in time for another call. Jess' time is running out.

As she was in hospital and far too ill to come and support Holly's Donor Day in person, Jess was determined to support her in any other way she could.

Please pass the link on to the below because if this doesn't kick people into action....I don't know what will.

Why support Donor Day?

2009-04-13T08:43:00.002Z

Just a quickie to say I am still here and fine and hope everyone had a lovely Easter...

Things have been crazy, and I was going to write about it, but a)because I'm lazy and b)because she's done it so well I suggest that you read Holly's account of Donor Day and the days surrounding it.

The whole thing was an incredible success and she did so very very well.

Shall write more in the week. But all is good :)

2009-04-05T12:10:00.003Z

Holly's big day is on Tuesday.

Am uber-excited for her...and also incredibly nervous. I'll be in London with her and the Battlefront film crew pretty much all of Monday and Tuesday, so please, lovely blog-following-people, if you can spread the word online, it would be vastly appreciated.

Wish us luck!

2009-04-03T12:36:00.000Z

Could you repost this somewhere? Please help Holly spread the word...

2009-03-31T16:09:00.005Z

And yet another week goes by without me posting...

...but let me assure you it was a fantastic week!

The concert (which I had been losing sleep over I was so nervous) was absolutely fantastic. My Choir did me proud, and the performance was full of heart and energy. We have received loads of compliments including a letter to the school from one of the audience members, so it was most definitely a success. Thank you so much to all of you who sent good luck messages or who came to see it.

Very exciting thing this week....back in June 2007, Robyn and I decided to create a booklet on CF and Relationships, as we felt there was little support material out there on this subject. It was Robyn's idea originally and I said I'd love to join her in doing it. Sadly Robyn's transplant didn't come in time and naturally the project ground to a halt.

However after her family mentioned to me how much she would have liked the project to be completed, the wonderful Jac offered her assistance and suddenly we were up and running again!

Around 60 pwcf and/or their partners contributed to this booklet, and after many many MANY hours of work (far more on Jac's part as she fought with all the layout, design and proof reading) it is finally finished!

The booklet attempts to touch on all sorts of potential issues arising from CF being a part of a relationship; from starting out, to moving in, from sex to fertility, to end of life issues. All the content is provided by real pwcf and their other halves, and it is their contributions that hopefully make the finished product such a valuable resource.

The CF Trust have put it on their website for download, which is v exciting recognition of the work that has gone in, and the wonderful Gary Torrance Memorial Fund has funded a batch of booklets to be printed so we can send them to all the specialist adut CF units across the country.

Seeing it all completed made me feel both happy and sad; thrilled that we have completed it and that hopefully this will really help people, and saddened that Robyn will never get to see her idea as a finished product.

Last week of work before Easter hols for me this week - after Friday I am actually quite ready for the rest!

2009-03-24T15:27:00.003Z

Look, it's me. Back when I was small and cute.

So I am now a quarter of a century old. A bit scary, but mostly very exciting that I got this far. That sounds incredibly melodramatic (and is a touch) but in all seriousness, if you look back over the years, it is quite miraculous that I am still here to whoop and dance around a lot.

To me, the biggie is 31. That's the age I really want to get to, and when I do, I shall have the biggest party in the history of mankind. This is for two reasons; firstly it will be 10 years since I was told I would only survive another year without new lungs, and secondly, and more importantly, I will have beaten that god-awful CF statistic: the Average Life Expectancy.

It can really hang over your head that one. Ironically, my rapid decline in later years meant it didn't actually bother me at all as I began to look upon it as a favourable target rather than an expiry date, but I know it’s a number that many people in the CF community focus on. Therefore I’d rather like to smash it up a bit when I get there.

Life for me at the moment continues to flow in the calm and rational manner that water does when hurtling over a rocky precipice. I have a huge concert coming up on Friday and I am both terrified and wonderfully excited. I hope it goes well; for my pupils more than anything…but also because I’m the one standing at the front if it all falls apart.

Quick musing (plus somewhat blatant plug) before I go; this post, is worth a read. I like it for several reasons; firstly it mentions me. Secondly it discusses the phenomenon of blogging; a topic I’ve chewed over a few times on here as I am truly fascinated in what attracts people to blog and to read blogs.

I can only really answer for myself on this one; I blog because I like to write. And, let’s face it, I like others to read what I write. I blog because I find it cathartic, I find it helps unjumble the spaghetti of my mind. I have used it as an outlet when the words are too frightening to say out loud, as a method of communication, as a diary, as a soapbox, as a notepad, as a canvas.

I read a variety of blogs myself. Mostly those of people with CF or transplant patients. Others I read for entertainment value or because of their writing style. I read them to keep up to date with people, with situations, and to educate myself. And if I’m honest, because I’m nosey. I love blogging, and it’s a fascinating and ever-growing phenomenon. Whilst we’re on the subject, do feel free to jot down any of your favourite blogs so I can go and nose over there too. And please, wish me luck for Friday…

2009-03-15T19:20:00.003Z

Sorry for the long delay between posts yet again...

You can always tell when life is going well as I am around less to write long waffle, so yet again do take it as a good sign :)

On Friday 6th, Oli and I went and spoke at a day organised by Harefield for Transplant professionals. It was a fascinating day (I attended some of the other talks) and it was wonderful to get to see so many members of the Transplant team that I don't really come into contact with any more. One of the weirdest moments was sitting on a chair having a cup of tea during one of the breaks when two of my transplant surgeons came and stood either side of me; the last time I was looking up at their faces together was when I was in ICU fully ventilated so it was a very bizarre feeling!

Things have been pretty manic really; I mentioned below, we had a busy but wonderful day on Saturday with a LLTGL meeting. I have a huge work thing coming up; my choir, which I started up in a local High school back in September won a competition at Christmas and consequently have a rather large concert coming up. They are working so very very hard but it's a huge mountain of a challenge and most of my time is going into preparation for it at the moment. At some point I think I'm supposed to be fitting a birthday in this week.

On Monday I was back up at Harefield for a checkup and I'm pleased to say it was shiny gold stars all round (whoop whoop). Sats monitor bleeped merrily at 100%, lung function is STILL creeping up, kidney levels were much better, in fact so much so that I was allowed to bipass Mr Kidneyman and head straight home! A glowing report and a fond "don't come back anytime soon" to send me on my way. Couldn't ask for any more than that really could I. I cannot explain how wonderful it is to be so busy and to still be well. I don't think that will ever stop being a novelty.

I shall try and write again a bit sooner but for now here's a picture of my mother demonstrating her delight at her favourite birthday present; memotoast - a plastic toaster which pops up toast-shaped memos for you to write notes on. Clearly nothing like my calm and mature self.

2009-03-07T20:32:00.001Z

I was at a LLTGL meeting all day today. It went really well and was so fantastic to see everyone and catch up; I do love what I do and the fantastic people I get to know through doing it.

But here's a serious reminder of why we all do what we do and why we are constantly asking for support and help in spreading the word.

A day in the life of Jessica Wales

2009-03-05T18:57:00.005Z

wooaaah, where did the last week go?!

So yes, Mauritius. It was incredible. It's somewhere I have been wanting to go for a very very long time and to be honest I never thought I'd manage to get there. To say it lived up to my expectations would be an understatement.

The last picture incidentally is me doing something called Deep Sea Walking. The space helmet traps air in so you just breathe normally, and there is an oxygen tube coming through the side which keeps you topped up with fresh O2. I opted for this rather than scuba diving as when I had been snorkelling last summer I got very nervous at the sensation of breathing through the snorkell as it reminded me of my trachi. I didn't want to pay for a scuba session and then find I was too scared to go through with it, so this seemed like the perfect option :)

One of the nicest things about coming home was how much I was looking forward to going back to work. It's such a wonderful feeling to want to get back to a job that I love....I'm a very lucky girl.

I am off to do a talk at Harefield tomorrow with Oli; I am quite nervous which is daft, but only because the people who actually physically saved my life by caring for me pre and post transplant (and the surgeon who did my op) will be present so I want it to be good! It's so weird to think that if it wasn't for two people we will never meet, neither Oli nor I would be here now.

And lastly a quick plea: Holly Shaw, a LLTGL Advocate and a very good friend has been going for Gold in her Battlefront campaign. She is holding a Donor day on 7th April and there are lots of ways you can support her in this, wherever you are. To find out more pop over to her website and say hello. Thanks muchly all.

2009-02-27T15:02:00.003Z

Sorry for the rather large delay in posting but I do have a good reason...

Mauritius.

Normal Service will be resumed shortly. Once I've come back down to earth.

2009-02-15T10:45:00.002Z

Reading this blog is bringing tears of joy to my eyes at the moment.

So very happy for them.

2009-02-08T14:23:00.003Z

Thank you so much for all your feedback and opinions on the comment posted by “Dave.” As promised, here are my opinions and the reasons behind them.

The idea of LifeSharers – the business which was promoted in this comment section here is an American organization which effectively asks people to sign up as members of a group which wants to only donate their organs to fellow LifeSharers. Their reasoning is that this way, people who are signed up on the ODR will be prioritized, which according to them is the way it should be.

It’s a very interesting theory. Basically utilizing a principle of exclusion - “if you don’t then I won’t help you” attitude rather than leading by example.

I can see the idea behind it. The desperation which those waiting for transplant feel when thinking “if you needed this transplant you’d sure as hell be more proactive about carrying a card” but the iea and the reality are extremely different and this principle is not workable in real life.

LifeSharers claims “There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die... Giving organs first to organ donors will convince more people to register as organ donors.”

This doesn’t really make any sense. The only way that would happen is if the law was changed to say that you could only receive an organ if registered as a donor. Which is not the case; this instead is a small group of already pro-organ donation people who have agreed to prioritize each other, not a national movement which will cause a shift in mentality.

The group claims “It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.”

Again, I do see where they are coming from. That frustration and anger definitely hit me when I was waiting; knowing that people who would shun the idea of signing up giving something like squeamishness as a reason would have the same priority as me, but that was merely a desperation to survive, fear of not making it. In reality, I feel Organ Donation has to remain a freely given gift. The minute you start attaching conditions it becomes something else.

Other than any ethical issues, the system itself is simply not workable. Emma and Jac in particular have made some great observations on this on the comments section; do have a look at all comments if you can. You might find it hard to believe that some people don’t know how to register or even understand what organ donation is, but every time I do another talk, I meet people that don’t fully understand it all, even though if they sat down and thought about it and knew what to do, they’d probably be willing to donate.

Some of the comments on this very blog have exposed myths still believed within the transplant community. Just to clear those up now: anyone can sign up as a donor – it’s up to the medical team to decide whether the organs are viable. It is not helpful not to sign up because you suspect your organs would not be useable. All the major religions support organ donation. Those infected with HIV cannot be organ donors.

Organ donation is so complex, with so many issues and questions, myths and facts, that if we cannot clearly define it how can we judge people who have not had any personal experience and assume they know enough to be signed up or to miss out?

And on a more emotional level, I just don’t like the idea of it. I find it somewhat spiteful and selfish, and completely contradictory to everything that, to me, organ donation represents; giving, selflessness, bravery, generosity…a gift.

Do keep the feedback coming if you still have opinions on this one; I find it all very interesting indeed.

2009-02-05T13:18:00.003Z

Click on the comments page of the below post and read the comment, sorry, advertisment by "Dave"

Very interested on your opinions on this "solution" to the problem of organ shortages.

Ready....steady....debate!

2009-02-04T15:46:00.004Z

So I went to see Seven pounds at the weekend.

I haven’t blogged about it yet as I wanted to let it all settle first. I did actually wake up that night thinking about it. If you haven’t seen the film but want to, don’t read the rest of this post as it contains spoilers.

The premise is that the main character (Will Smith) wants to set out to help seven strangers. Organ Donation is the overriding theme of the film. Rather than lay out the storyline I’m just going to assume readers have seen it and talk about my reactions to it.

Firstly I must state; it is not a perfect film. There are inaccuracies, twee parts, unnecessary elements and errors from a person-who-studied-film-at-uni perspective. However my main interest (and reason for going to see it) was to see the handling of the organ donation content.

The main female character Emily had the most impact on me. Same name only highlighted further the similar circumstances she portrayed, and I found her convincing to the point of feeling my toes curl when certain gasps of breath or looks of fatigue took me sharply back to my past.The film is one filled with sadness and pain. Organ Donation, whilst the predominant thread, is not the only subject matter here; psychological issues and coping with loss and guilt are also explored.

But back to Organ Donation. Overall I think it was handled well as a subject. It was taken for granted that the viewer comprehended the severity of the donor shortage but I think the lack of weighty facts made it stronger by making it less preachy. Emily’s predicament was striking and could only really create a feeling of empathy and sadness from anyone watching.

I'd probably say that from my perspective, the best bit about it was the insight given into Emily’s ordeal. Because of this I think a great many people have been given an insight into life on the list; not a wholly accurate one, but a good one nevertheless.As I say, the film is a sad one, and by the end I couldn’t stop the tears streaming down my face. Part of that was due to the plot and where it was going, part of it was reliving extracts from my past as they were played out on the screen. It made me think a great deal about my donor and their family. A lot of my sobs were for them.

I’m glad I went to see it, I’m glad it was made, and I’m very glad Will Smith took the role as it has heightened the Film’s profile a great deal. But I found it so very emotional...I don’t think I could watch it again anytime soon.

2009-02-03T08:12:00.007Z

Snow.

Glorious, wonderful, exciting, childish snow.

It started on Sunday night, with a thin sprinkling settling by the time I was leaving my parents house.

Waking up on Monday morning and looking out of the window made me feel as if I was five again. The overwhelming joy at seeing almost knee-deep snow was ridiculous. Obviously as A and I are mature adults, we built a snowbear before walking/sliding to the local park to join my family, where my even more mature parents were sledging down the hillside.

As I was carefully forming the muzzle of our snowbear it struck me - as it often does at random times - how I might never have seen this day, and how my family might have been laughing and hurtling themselves down the hillside without me. But I'm here and had the most fantastic time, and tried to make the very most out of it that I possibly could. For my donor as well as for me.

It really was a wonderful day.

2009-01-30T18:28:00.006Z

I'm on Twitter now.

So far, I've managed to add myself so I am following me. Twice. No one is quite sure how, and so I am obscurely proud of my technical (in)capabilities.

On other far more important news, this is Ethan.

How gorgeous is he? He has never left hospital. Ever. His mummy and daddy have never been able to take him home. That to me is sad enough. Sadder though is without a new liver and small bowel, Ethan doesn't have long left.

His facebook group has over 47,000 members. I very much hope they have all signed up to the Organ Donor Register.

His dad has decided that he needs a challenge to focus on, and along with some family members and friends, will be running the Great Manchester Run to raise money for LLTGL.

It's pretty humbling really. I really really hope his call comes soon. If you can, please show them your support.

Ethan is another person to add to my "please please please let their call come soon" wish list. Emmie is off on holiday again soon and so the jokes have already started as she is infamous for her disappearance from the country resulting in someone getting called for transplant. Amongst the humour there is a sad note; people laugh that someone should get called in that time but who should it be? Who is "most deserving?" the person who has been waiting longest? The person who has struggled the most recently? What about someone perhaps who has a child? Perhaps it is a child.

The answer of course is that everyone who is waiting deserves and needs that chance. Of course there's no priority of need. But I remember how hard it makes it when waiting and having friends who are also waiting. You want it for them....but you want it for yourself more. For any of you who are waiting who have felt that, please know it's natural and there's nothing wrong with those feelings. It's a survival instinct.

Life for me is good. Better than good. Much better than good. I just hope that we can continue making it better for those out there waiting.

2009-01-26T13:19:00.002Z

15 Top Tips for Lung Swop Op-ers

(An idea openly stolen from fellow blogger golightly)

1. Everyone tells you to make sure your case is packed for transplant. What they forget to tell you is make sure your family have cases packed too. I happily unconscious in a hospital gown whilst they telephoned various friends in an effort to gain clean clothes before they were asked to leave for hygiene purposes.

2. Waiting is hard. The hardest bit for me was feeling I couldn’t go on and realizing I had no choice; you just have to sit it out. But you’re stronger than you think and you can do it.

3. Start telling the truth. I mean when your friends ask “how are you?” instead of the automatic “I’m fine thanks” maybe tell them a few of the things going on in your head. Some people genuinely want to know, and those people are invaluable in your mission to stay sane.

4. Change your goals. So maybe you can’t do the big stuff anymore. Maybe your new goal is that next weekend you are going to leave the house and visit a relative you haven’t seen in a while. Maybe it’s to read a certain book. Small and flexible goals are so important to keep you pushing forwards.

5. It’s not over till it’s over.

6. Accept help. To me staying independent meant doing what I wanted to do for as long as possible. If that meant using a wheelchair, a carer and various other contraptions then so be it. Strength is knowing when to ask for support, not struggling on vainly without it.

7. False alarms are a hugely emotional experience. But can be positive; you know what the real thing will be like now, and are better prepared. It’s probably acceptable to buy yourself a frivolous and unnecessary treat following though.

8. After your transplant you will have to work harder than you have ever worked before. But it is worth it, a thousand and one times over.

9. When you wake up and panic that it is still hard work to breathe, do try to remember…they just cut you open and stuck brand new lungs in. Which will delay that feeling of “woooo I can breathe!” somewhat.

10. Two steps forwards one step back. Sometimes about 5 steps back. No matter how many times they tell you this is normal you won’t believe it. And no matter how much you don’t believe it it’s still true. The road to recovery is rocky and just because you have setbacks doesn’t mean you’re not doing well.

11. Oxygen tubing is less effective at delivering flow when the bedside table has rolled onto it. Same applies to suction power of chest drain tubing.

12. Hospitals are fantastic places full of people who work tirelessly to save lives. However they have hundreds of patients and there’s only one of you. Sometimes you need to speak up to make sure your voice is heard.

13. A huge amount of patients (including myself) struggle with negative emotions after the op. Don’t suffer it alone, don’t feel guilty and try to force yourself to be happy; get help.

14. Nebuliser machines are also fantastic for blowing up beach balls, lilos and other inflatable items.

15. Someone once told me your old life as a chronically sick person kaleidoscopes down so fast, you almost forget what it was like to be that ill. I didn’t believe him...it turns out he was spot on.

2009-01-23T15:09:00.004Z

Dear Gaz,

I can't believe it's already been 4 years today since you left us. Where has the time gone? You were my first really close friend who was a CFer, and to be honest the first person who truly appreciated my stripy socks as much as I did.

I still think about you lots. Mini-Gaz and Mini-Em are sitting at the top of my wardobe! Mini-Em's hair grows more and more inexplicable as time goes on. You are mentioned at the bottom of the LLTGL website as our inspiration and drive to get on and launch those T-shirts.

I often try and imagine what you'd be doing now, I suspect the web would play a key role in your job! You were so good at web stuff, it's only now I look back and realise how poorly you were at the time that I see what an incredible achievement pwcf.net was.

I still miss you an awful lot. I still get sad when I think that we could still be having those chats and giggles....if you had got your transplant in time. Not much else to say really, except that I miss you. And you continue to inspire me to live my life as best I can and to continue raising awareness and hopefully saving lives. xx

2009-01-18T10:25:00.002Z

Today is a very special friend's birthday.

Happy Birthday Emmie; I hope you are feeling better and enjoy your day!

lots of love xxxxx

2009-01-13T14:40:00.003Z

It's been a tough 24 hours.

A friend of mine got his call for Transplant back in September. He had a complicated recovery (didn't alarm me due to my history) and I grew quite close to his partner, chatting to her as often as possible and spending the day with her when I was up for Clinic.

New complications sprang up a few weeks ago - septicaemia and infection in the lungs. With confidence I reminded his partner that I'd taken a very similar track indeed, and a few weeks later after scaring my family (and the team) to pieces, I was back on the mend.

Naive confidence perhaps, as yesterday I got the horribly sad news that he hadn't made it.

This tragedy is not about me in any way shape or form, but this blog is so I'm going to be self-centred on it as is my privilege as the author.

The mixture of emotions swimming round is immense. I have grown pretty close to his lovely partner and imagining what she is going through breaks my heart. It reminds me how lucky A and I are to have celebrated our first wedding anniversary in November. How lucky my family and I are to have celebrated a busy, noisy, rowdy Christmas together. How lucky I am to have just marked my 2nd year anniversary with my new lungs.

And of course, that feeling which always accompanies the loss of someone in a similar position; survivors guilt. The futile but natural ponderings on why I survived and he didn’t. There’s no rhyme or reason, I’m fully aware of that, but it doesn’t stop the questions.

Being a transplant survivor and campaigner, I am self-conditioned to put my faith into transplantation being the answer. Of course it is the answer, well the only possible one, for people such as myself who will otherwise die. But that doesn’t make it foolproof. Transplantation is a risky business; it’s a complex procedure which is why it’s only used when all other avenues have been exhausted. But it offers a hope; the chance of a new chapter with renewed health.

It’s a strange and helpless place I find myself in. When I lose a friend pre-transplant, my answer is to throw myself even harder into campaigning and raising awareness. But this was sadly a transplant which was not a success. A rare but devastatingly hard scenario to face.

In amongst my self-wallowings, my thoughts are with his family, his friends, and his gorgeous wife. And all my warmest wishes go to them during this very sad time.

2009-01-09T09:51:00.004Z

ER.

Does anyone watch it? I used to be a huge fan (admittedly predominantly driven by my desire to be treated by Dr Kovac) but I haven't watched it for a while. Just a warning, if you are hoping to catch up on last night's episode, don't read the rest of this blog.

Flicking through the channels last night, I noticed the new series was starting. Not just the new series, the very last ER series. I figured I'd watch it, ER like most TV dramas is fairly easy to catch up on, even after a prolonged period of absence.

An ambulance had crashed, or exploded, or spontaneously combusted or something, and two of the lead characters (Abbie Lockheart and Dr Pratt for any followers) were on board. Both appeared to have minor injuries and were taken to the hospital where it was discovered Pratts were more extensive.

Pratt's brother (this is an assumption based on dialogue as I didn't recognise the character) was present whilst the doctors worked hard battling various complications that arose. Once he was stablised and on bipass, a different doctor came in to do some tests on his brain which revealed no cerebral activity.

Dr Smoulderingbutpainedlooking took Pratt's brother aside and told him that in his wallet, Pratt carried a donor card. His brother through gritted teeth answered "he's not dead yet" but agreed that should it come to that he would give consent.

Several hours passed (apparently) and the brain stem tests were repeated. The team explained to the brother that there was no activity, that there hadn't been for 4 hours and that the bipass was doing all the work of his heart which was also gone.

So far I know this is sounding like a pretty typical TV drama (well it is) but there were a few key elements that really struck me. There were a lot of close ups on the character throughout, and he looked very much alive, just like he was sleeping. There was no screaming from those around, no spurting blood and machines going off, it was all very peaceful and he looked...stable. This is, in my opinion, one of the biggest hurdles in Organ Donation, where you are being told someone has gone but your eyes are telling you something completely different.

The team then explained that he would be taken to theatre on the bipass machine to preserve the organs. They wheeled him slowly through the corridors, with members of staff gazing sorrowfully in typical TV drama style. By this time, I was sobbing, not just the odd tear, those huge noisy ugly sobs that rip right up from your chest. Some of it was to do with the fact that I cry at most things on TV (thank you mother for that gene) but there was a bigger part of me which hurt for all families who have had to go through that, who have made that decision and who have been so very brave.

I felt on the whole it was a good portrayal; the organ donation bit didn't actually dominate the storyline; it was a big part, but was made to seem like the norm, the right thing to do, no matter how hard. Also, this wasn't just a one-episode character who made an appearance to be an organ donor and then was never heard of again, this was a main character, a character who many viewers will have watched develop over the years.

A long blog about an episode of a TV drama. Hmm. But I had to talk about it as it did affect me quite deeply. TV can do that kind of thing you know.

edit - apparently you can watch the episode on catchup here.

2009-01-02T14:34:00.002Z

Happy New Year!
I hope everyone had a fantastic and sparkly Christmas - mine was wonderful and consisted predominantly of family, food and a great deal of fun.

I caught another cold (4th this winter) in the run up to Christmas and it really hit me hard – one of the reasons I went so quiet. Dutifully, I headed up to Harefield to be checked out and was horrified when they mentioned the words “acute infection” and “IVs” to me. Looking back it was a pathetically over the top internal reaction – as a CFer I used to have IVs all the time and there are hundreds of pwcf out there who still have IVs all the time and don’t bat an eyelid...but it’s true what I was told pre-transplant; you get used to being “normal” ever so quickly.

Anyway. They gave me some orals and I am to go back on Monday. But the great news is the Temperatures have stopped as have the other horrid symptoms and I am fairly confident that I will be sent away IV-free. Lung function remained pretty much stable which is obviously the most reassuring sign.

Feeling so ill this side of transplant hit me in a variety of ways. Firstly, I panicked as I am not used to being ill now I am well (comprehend that sentence if you can). Secondly and more horribly, I was able to remember properly for the first time since transplant how it used to be. Now I’m so well, it’s very hard to take my mind back to life pre-tx as my entire body feels different and memory relies on sensations and feelings as well. But I was transported back to lying in bed all the time and it shook me quite a bit mentally (am still randomly welling up/crying at the smallest thing, most amusing example being when I was telling my mum about crying that morning I cried remembering how I cried. Hmm.)

Now I’m feeling much better the strangest feeling left is one of guilt; I feel like compared to my old CF-state (and to many of my CF friends) I had no right to get in a state or to moan as much as I did…I’ve put up with worse and others are still putting up with worse. But then I was scared; I was told it was an acute infection and that can cause rejection….but then once the antibiotics kicked in within two days I was feeling so much better. It made me feel fraudulent as before it would take me weeks if not months to recover. Does that mean it was less valid? I’m unsure, but just very glad these orals seem to have worked.

Nearly two years on (in 2 days!) and I am still getting used to my new lungs. I suppose I worked with my old ones for 22 years so I shouldn’t really be surprised that there are still unknowns hidden around corners.

Other than a bit of crappy health luck, Christmas and New Year were fabulous. I always get a bit emotional at New Year and was reassured that several other Transplant patients reassured me that they do too. I think it’s just such a marker that anyone who has been through anything vaguely life-altering will find a whole sea of emotions well up in them at that time.

New Years Resolutions for 2009? The same ones I always make (and never keep) such as being more organized, tidier, etc, but also not to take things for granted. I always worry slightly that I am in danger of doing that the further away my old life becomes, and I never ever want to forget how lucky I am.

2008-12-17T10:29:00.004Z

Another manic but fantastic week this week.

In my job, getting the pupils to perform in concerts is quite a bit part of it. And what time of year guarantees a concert or seven? Christmas. So this week is rather hectic however I am loving it and so far all pupils have made me uber-proud.

We also launched our annual LLTGL Christmas Media Campaign yesterday which has hit the ground running and so I am being kept rather busy with that when not rehearing/performing. I am amazed every year at all the fantastic people who volunteer to talk about their own stories, some of them extremely difficult and sad, just to try and help others understand what it is like at this time of year, to be affected by Transplant or Organ Donation.

We've had a brilliant response so far, and I'm very much hoping it continues. I have said it so many times but you cannot underestimate the power of seeing a real life story in the Media. Watching or reading about the human side of things touches people in a way facts and figures cannot. We are indebted to the fab LLTGL volunteers who time and time again come up trumps.

And finally and most excitingly of all, we have a gorgeous sparkly Christmas tree up in our lounge so now it properly feels like Christmas. I finish work on Saturday and am so looking forward to the fantastic traditions our family somehow still maintain. Merry Christmas Everyone!

2008-12-10T13:30:00.003Z

I've been a bit quiet haven't I...

Sorry about that.

Life is hectic. But wonderful :) I am trying to get organised for Christmas (and not succeeding) trying to keep away from colds (and not succeeding) and generally rushing around like a headless chicken (succeeding very well on that one).

Like the pretty widget thing for Holly's Battlefront campaign I've put in my sidebar? You can get one by visiting her page and scrolling down to promote this campaign.

Off to write some Christmas cards. I am I am I am.

2008-12-04T10:21:00.003Z

We have a new website!

WEEEEE!

Go and have a look! It's obviously not quite finished yet but hopefully you'll agree it's looking pretty good so far!

Can you tell I'm excited?

Off to calm down now...

2008-12-01T14:20:00.002Z

Another hectic week has flown by...

But hectic in a really really good way. Lots and lots going on behind the scenes for LLTGL, Holly is feeling much better and mending well so her Battlefront campaign is getting a big kick-start, and work wise one of my Choirs is in a competition just before Christmas, not to mention the fact that of course all schools and choirs have Christmas concerts...

So it's rather manic right now! I was feeling nice and smug and proud that I started my Christmas shopping this week, then I received two Christmas cards in the post - people are so organised they're already sending their Christmas cards?! Erk!

I absolutely adore Christmas; sparkly lights, tinsel, glitter, presents, marzipan, clearly it's one of my favourite times of year! I am however rather scared at how fast it is approaching; this whole year has flown by incredibly quickly.

This is really quite a nothing update just to reassure people that everything is fine, just busy! Hope everyone else is also well and smiley.

Oh and one more thing, a little ask because if you don't ask you don't get...

My friend Jake got his transplant two months ago. All great, all fantastic, big celebration. He's a lovely guy, and his wife Laura equally so. They got married in the Summer so this is their first Christmas together.

Only Jake has had quite a few complications and setbacks. To the extent that he definitely will not be able to go home for Christmas. Not only that but some complications relating to his trachi tube means he will not be able to eat, drink or talk for the next few months until he's strong enough for them to sort it.

When I was ill some friends set up a Transplant Fund for me. Knowing how much of a strain Hospital puts on the family, I have set up a similar one for Jake. If anyone would like to contribute even the tiniest amount of Christmas cheer - please contact me through my website. Huge thank yous in advance.

2008-11-26T11:46:00.001Z

Please take a look at the latest LLTGL blog.

Find it inspirational? Please email/send link to as many of your friends and work colleagues as you can in the hope they'll click on the link at the end of the post and sign the Organ Donor Register.

Big Thank You to Sarah and Peter who let us use their story to inspire others.

ps - I'm fine. I'm talking LLTGL stuff, rather than about me so it has to be a good sign!

2008-11-24T10:09:00.001Z

I was thoroughly unimpressed by now. I had had a reading that had been ridiculously high much earlier in the year, had a re-test, and then it was fine. I explained this to them and was told that one of the SHOs was coming to talk to me. She arrived and I asked jokingly if she’d come to give me good news and she replied cautiously “I’ve come to talk to you.” She went on to explain that the un-recordable reading (which I’d automatically assumed was too high) was actually far too low. That it showed hardly any presence of Cyclosporin in my blood. She looked at me, somewhat nervously and said as firmly as she could “we need to know if you have stopped taking your medication.”

What I should have been able to do is casually laugh and gently reassure her that there’s no way I’d ever be that stupid but I was so shocked that my stomach flipped and I felt tears gathering in my eyes. I couldn’t believe they would think that of me. She went on to say that obviously they hoped this was highly unlikely but a sudden drop in lung function coupled with these blood results did begin to look suspicious.

Just to reassure anyone who may have any doubts, I would never ever stop taking my immunosuppressants. They are keeping me alive. They are keeping these lungs healthy. A handful of tablets morning and evening are allowing me to live a normal life. To stop taking them would be suicide.

I started babbling, feeling like I needed to prove myself to this doctor, who was very kind but didn’t know me at all. She explained that if I did have no cyclosporin in my blood they’d put me on an infusion straight away to get the levels back up. This helped clear my mind a bit – I knew there was no way the blood test could be correct and whatever the evidence might suggest it was not true. As she went to discuss it with another doctor, I phoned A tearfully, just to check that he hadn’t notice me miss any doses either. He reassured me that I know I haven’t and I got myself together and went to speak to the doctor.

I told her again that I’d never do that and due to the fact the level was so low (suggesting I’d stopped taking them for some period of time) I was convinced this was a dud reading so I would refuse the infusion for fear of further damage to my kidneys if they did suggest it. Luckily she said the other doctor had agreed that if I said I hadn’t stopped they couldn’t believe I’d ever do that either and it was suggested I return for a repeat blood test early the next morning.

This was all I needed to hear – they didn’t believe I’d ever treat my new lungs with that contempt. I was so relieved. I ran out of the hospital (forgetting to collect the inhaler in my haste) before anyone could change their minds and headed home for a good nights sleep. The next morning I whizzed back up bright and early, had the bloods (which they rushed through so I could go again if it was fine which I thought was lovely) and sure enough around 9am was told the level was absolutely fine.

I have no problems at all with the way the hospital dealt with this – I think they were cautious and thorough. If I was a doctor greeted with reduced lung function + no cyclosporin in blood level I’d have to come to that conclusion as a possibility too. Every move they made was for the safety of me and my lungs. As for the initial result (which must have been a dud reading) I’m just glad that it’s all ok now and mix ups must happen in the labs sometimes so no one is to blame.

As I say it was a strange few days. The inhaler has been fantastic and my lung func is nearly back to normal. My cold is also well on its way out. It’s not long till Christmas now (wooo!) and hopefully that will be the end of my mini-drama and I can focus on work and on festive preparations. Now if you want to read a real thriller of a story, take a look at Sarah’s blog, where she is detailing the incredible events in the run up to William’s Transplant.

Thanks again for all your lovely wishes and big yay for being at home.

2008-11-22T08:45:00.001Z

That was the end of my hospitalised blogging as things moved quite quickly after that. Good old Dr C (my fab consultant who tells it like it is, doesn’t take any nonsense and is extremely key in me still being here today) came round to have a chat. He explained why they’d pulled me in so fast; a drop the size of mine in 24 hours needs checking straight away. He told me not to be fooled by the “just a cold” scenario (which is a shame as that’d been my mantra since admission) as whilst hopefully colds would be “just colds” they could actually cause three far more serious problems:

1.Pneumocystis – which is where the infection actually gets into the lung tissue rather than into the airways (no thank you)
2.Acute rejection – I’ve not talked much about rejection so I should really explain a bit more here. There are two types. Acute, is a sudden onset rejection often characterised by a sudden drop in lung function, temperatures, a drop in oxygen saturations or all of the above. It is very common (most people have at least one episode in their first year) and is reversible but it’s vital that it’s caught quickly so they can change appropriate meds and treat it swiftly and effectively.
3.Chronic rejection – this is the other type and is a slower acting more long term form of rejection. It causes a progressive decline in lung function and reminds me a little of CF really. It is non-reversable although treatments can slow and sometimes halt progression.

They were looking for either one or two in me however a cold that settles on the chest and left unchecked could eventually be responsible for triggering three. A slightly scary talk yes but important as of course I feel so normal. And I am normal, it’s just I am normal as we (the hospital my family my friends and I) are meticulous about ensuring nothing occurs to jeopardise that. I must admit I’d never really considered a cold could cause me much harm post transplant so I am very glad that I am now much more aware of what to look out for.

It hasn’t really scared me though as I’ve had about 3 colds since transplant and this is the first one to go onto my chest, and even this one (by the looks of it) isn’t going any further.

Anyway so after all that, it was decided that I didn’t need a bronch, my lung func that morning had gone up slightly and a very audible wheeze could be heard but with no evidence on a CT suggested mild cold related inflammation. I was given an inhaler (ah my purple inhaler – I’ve sort of missed you for the last 21 months) just to help me over the next few weeks till this cold has shifted. Under strict instructions to ring if anything changes, I was told I could go home.

Just as I was packing up my stuff and chatting to a friend who’d come to visit her husband, the nurse appeared nervously round the corner, holding the curtain in front of her saying this was her protection. “Your Cyclosporin results have just come back...they are unrecordable. I’ve been instructed to chain you to the bed. You can’t go home.”

To be continued...

2008-11-21T08:16:00.003Z

So yesterday's (posted) blog was written when I was in hosp on the Tuesday and had no internet (by the way I am out now and these are being posted retrospectively).

And here's Wednesday's blog.

“Good morning, sleep well?” asked a gentle cheery voice peering round the curtain. I answered sleepily in the affirmative and automatically held out my arm for a blood pressure cuff and sats probe; clearly being in hospital is like riding a bike. Perfect sats, BP and temp (hurrah) left me feeling positive, even when told I am now nil by mouth as if they still cannot locate the problem they will do a bronchoscopy at lunchtime.

I am on the 2nd floor so upon opening my curtains I am greeted to a lightly frosted spread of fields and trees, with golden sun-painted tips. The blue sky and early morning sunshine create a breathtaking view so I stand by the window, drinking it all in.

“Lovely isn’t it?” says a voice and I turn to see (let’s call her) S, a lady a few beds down, who has laboriously made it back from the bathroom, oxygen cylinder in tow. She’s in for her assessment and tells me she is worried she will not be accepted onto the list as she is over 60. It’s hard to answer to that so I tell her my honest feeling; that what they look for as well as age is determination and she clearly demonstrates this. But we are both aware that her age and frailty combined with the huge lack of donors and the number of young people waiting may well count against her. We chat a little, pausing regularly for her to draw breath and for me to stare out of the window.

Her emotional journey so reflects my own; your world becomes smaller, everything is a mammoth task...it begins to feel that you are existing rather than living. Only I didn’t have that fear that I wouldn’t be accepted onto the list. Well nothing is certain, so I knew there was a slim chance there could be a problem, but there were no evident factors which could cause an issue therefore my chances of making it on were fairly good.

I like S instantly, her warmth and openness is very apparent, and I am hoping very much that her body is strong enough and that the doctors will see a determination in her which allows them to put her forward for transplantation. She wanders back to her bed as a nurse approaches me to give me a huge hug – she’s just worked out that I am me with a new surname and has come to congratulate me.

I am feeling extremely happy and content this morning – two things which I definitely did not expect to be feeling right now. Sometimes something like an admission to hospital makes you stop and re-assess, and the most wonderful thing is that I am sitting here wishing I was back home and back at work. How lucky am I to love my job so much? To be so happy? It’s a nice thing to be missing these things and it reminds me how special they are to me.

As I am nil by mouth (the joys) my Lung Function Tests and CT scan are done and completed very quickly. If the CT results show anything, I'm heading down for a bronchoscopy. The phlebotomist arrives and takes more blood. Time to sit and wait. Thank goodness I have this computer.

To be continued...

2008-11-20T11:12:00.001Z

An interesting couple of days would probably be the best way of summing up the beginning of this week....

Some of you probably saw me on This Morning (thanks for all the feedback and messages as always). In case you couldn't tell, I had a horrific head cold that had just set in that day. Which triggered off a whole set of events....

Here is a blog written Tuesday afternoon.

So this is surreal...

Yesterday my lung function dropped. Due to the fact a stinking cold was attacking me with early-stage vigour (plus the fact that I was rather busy) I decided to let said cold die down a bit and see what the results said today.

Today they were exactly the same. As it was a rather significant drop I phoned Harefield who, to my surprise and annoyance, requested I come up straight away. I did as I was told (I’m so good) and the result is that it is now 6.30 in the evening, and I am sitting on a ward with hospital wristbands scratching the keyboard as I type, feeling a tad sulky at the fact that I have been denied bail.

I can’t really complain – after all it is a big drop and the fact they are so incredibly proactive and aggressive in their treatment of anything suspect is very good news indeed for me. I am just being a tad petulant as, well, I’m busy. When I used to go into hospital it was part of my regime (pretty much a monthly occurrence) but now my week is full of stuff and suddenly I am feeling nervous at the prospect of having to put off said stuff and how to explain my absence. Suddenly I am “normal” and everyone views me as such, therefore announcing I’ve been taken into hospital may cause shock and worry, rather than “oh no not again” followed by purchases of standard sweet supply for hospital stays.

Filling in her paperwork, the SHO asked “when were you last admitted for treatment” and I surprised myself as I found myself answering “January 2007, for my transplant.”
After filling in a mountain of forms (nurses have been given what appears to be an entire new book to fill out on admission – just what they need; more paperwork to keep them from looking after their patients...) I lay back on my bed, pressing the little green arrow on the control pad to raise my head. The sensation and the noise took me sharply back to my lengthy recovery, and spending week after week staring at the ceiling, watching people walk in and out of my vision, coming and going whilst I remained static.

It’s oddly unsettling to realise that you’ve become so used to being well and being away from hospitals that the memory of when you were part of that world seems more like a memory of a film clip than one of your own lifetime.

One of the strangest things is that I don’t have a clue what is going on. The team are being fantastic (as always) and explaining everything, but when I was admitted with my old lungs I knew pretty much what was causing the issue, what they would look for, what they would do and how my recovery would go. This is all brand new and very strange – I feel daft asking questions about what will lie ahead tomorrow but I am so used to knowing it feels uncomfortable being in the dark.

To be continued...

2008-11-17T17:51:00.004Z

Please support Holly's campaign

2008-11-15T09:01:00.004Z

So Gordon Brown's Opt Out proposal has been turned down by the Organ Donor Task Force.

Interestingly, I am neither surprised nor bothered by this result.

Opt-out seems in theory like the perfect solution, but after a couple of years of delving much deeper into transplantation and organ donation it's become clear that actually it is far from the definitive answer.

The issue of opt out is a very complex one, with so many factors it is actually difficult to see what kind of affect a law like that would actually have on organ donation rates.

Emmie (as always) explains things much better than I do on our intoto forum:

I have to say that the decision didn't come as too much of a surprise to me as I had been getting the vibes for some time that the taskforce was unlikely to come out in favour of legislative change. I don't believe its a huge blow however and I think that much more important steps are being taken to improve donation and transplant rates thanks to the government's acceptance in full of the task force's recommendations that came out in January. Thess aim to increase organ donation rates by 50% over the next 5 years and is based on the success of the Spanish system of organ donation. Contrary to what the media may be saying, Spain has the highest donor rates in the world because of its system not because of its presumed consent laws (and this is backed up by the man who set up their system).

Even if we had gone for an Opt-Out system of consent, families would still need to support their loved one's organs being donated in order for it to proceed so the key would still be education, awareness and understanding just as it is now. And there would have been the danger of a backlash against the system with people removing themselves from the list in order to make a point. To my mind the most important thing is that plans are already being carried out to change the UK's organ donor crisis and I think that this change is long overdue.

I am not against opt-out, and it bugs me when people start ranting about "choices being made for them" (surely if that's the case the choice is currently being made for them not to donate!?) but I personally do feel now would not have been the right time to bring in opt-out: people are not ready for it, there is too much confusion, too many myths, and too little education, all of which must be tackled first.

I was on LBC yesterday talking about it all and it looks like I will be on This Morning and on ITV lunchtime news on Monday....will keep you posted.

I am off to a LLTGL Meeting today and very excited about seeing everyone and doing looooads of work. WOO!

2008-11-12T10:13:00.001Z

I've been thinking a lot about death recently.

That got you sitting up and paying attention didn't it ;)

In all seriousness, I have been thinking a lot about it but not my death, just death in general. And in a negative or depressed way, a genuine interest in our (the UK's) psychological approach to death and dying. Honest.

I think we (society) actually have an unhealthy viewpoint about death. I mean obviously no one wants to die and so fear of death is natural. But a fear of talking about death? I think is taking things a bit too far.

You can probably see where I’m going with this now. I wonder how much of our attitude towards death has a knock-on affect on the lack of people on the organ donor register? The next logical comparison I can think of would be a will – who has actually made a will? Come on hands up...I suspect most who have, have either done so because a) they’ve been made to face up to their own mortality (like me) or b) have a dependant which means suddenly it becomes a practical necessity therefore easier to tackle than when it’s merely an emotional concept.

I went to a fascinating lecture when I attended the Manchester study day on transplantation. It was all about death and dying; how we view it, how our preconceptions of death may have an impact on organ donation and on how those approached view the scenario in front of their eyes. Ask a child what a dead person looks like and they will probably stick their tongue out and roll their eyes upwards. How much of that childish notion remains and interferes with what a potential donor family might see in front of them?

How much of our negative viewpoint about death has a knock-on affect on our viewpoint of organ donation? Clearly death is never going to be a positive thing but I’m wondering if other cultures who have different perspectives on the whole life/death cycle would view organ donation differently?

I believe our reluctance to talk about it and face up to it has a negative impact on people when they are forced to. There is no preparation, very little support, and an unwritten rule that you shouldn’t talk about it as you’ll “bring people down”. What about young people who are facing their own death? Where do they go to talk? I had a talk with a nurse at the hospital which will remain with me forever as it was the first time anyone had answered my questions (which I felt terribly guilty for even wanting to know) about dying and had talked openly about it without flinching. It made things far less scary for me as suddenly I felt I wasn’t on my own, facing the unmentionable.

Every now and then I get vaguely concerned at how interesting I find all this but I think as long as I am able to keep it as an interest on an academic level (trust me, I am very much alive and living it up) then I’m allowed to find it fascinating...aren’t I?

It’s one of those blogs where I ask more questions than I answer. Nevermind. I would love your input on this, and to know how uncomfortable it made you reading this post.

And now I’ll get back to doing some more living.

2008-11-06T10:15:00.004Z

SHE WON!!

Holly won Battlefront!

We're all absolutely thrilled for her; she worked so hard campaigning and totally deserves this. As she still has one v new (and apparently lazy) kidney I am helping out a bit (gulp) but all credit goes to Hols for being a star and shining so bright the judges had no option but to pick her as the best campaigner.

Hols, we're all so proud of you and behind you every step of the way xx

ps - forgot to say (most importantly) YOU can help! Just go to Holly's battlefront page to find out how to promote her campaign on blogger, bebo, facebook, myspace etc...

Thanks muchly x

2008-11-03T09:57:00.002Z

A year ago today...

I cannot believe the most magical and wonderful first year has flown by so fast...I am so lucky.

2008-10-30T13:35:00.003Z

On Tuesday, Oli and I went to see a very special couple. Nyila and Zulf live in Coventry, and had agreed to chat to us and to have their story filmed so we can use it for raising awareness.

Fantastic stuff. Of course we have many fab volunteers stepping up to share their story, because they want to raise awareness about their plight. But Nyila and Zulf are different, because their story has already had it's very sad ending.

Their son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive.

They described him in such a passionate way I could imagine him really clearly - his mischevious personality and cheeky smile captured in dozens of photos we went through. They laughed over fond memories - such as the fact that he apparently struggled to hold his milk bottle yet would quite happily wave a 2 litre (empty) coke bottle around!

Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list. They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and at times during the interview I was wiping away my tears, trying to remain professional.

I cannot express how much I am in awe of Nyila and Zulf - they are so determined to stop other families going through what they have and are intent on supporting us inspite of their grief. Their story is so moving, it cannot fail to motivate people to think and talk about the subject of organ donation.

It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs? I'd love to hear some opinions about this.

Oli is putting together a video at the moment, featuring Ubaid and Nehal's stories, which I will be using on Saturday when I speak at a dance festival called Kalaalayyam. Who knows how many lives might be saved by these people speaking out about their experiences - without real life stories, Live Life Then Give Life would not be as strong as it is; we need you to help us help others. And as for me personally, I can't think of anything more motivating to remind us why we do what we do.

2008-10-27T14:51:00.005Z

On Saturday, Oli and I joined our advocate Nelly in Uxbridge to walk 5k. Why? Because of the World's Biggest Walk, that's why!

Nelly had organised everything and at midday we set off round her town, decked in bright blue UK Transplant balloons to raise awareness about organ donation. It felt rather strange but great knowing people all over the world were walking at the same time as us and the weather was kind, holding off from raining until we finished.

It was the first time I'd ever met Nelly and her family and I was struck by how tight-knit they were; it reminded me very much of my family, and I know for a fact I would have gone insane without my family's support during the long wait for transplant.

Nelly is of Asian descent, therefore faces a much longer wait due to the critical shortage of Asian donors and the fact that people from that background are three times as likely to need a kidney transplant. Her kidney failure has caused rickets which means she is now wheelchair bound. Yet during the entire day, I didn't once see that girl without a smile on her face.

The walk was fantastic, Nelly's family and friends so lovely and eager to do everything they could to raise as much awareness as possible. Oli filmed the event (with our brand new LLTGL filming equipment - woohoo!) and I tried to look impressive by carrying the boom mic around. It was a fantastic day and I did notice at the end how inspite of a) walking 5k and b) wearing stupid and inappropriate shoes I felt fine at the end. How lucky am I.

Tomorrow, the Oli/Emily filming duo disappear off to Coventry to film a rather incredible couple...they lost their son a few months ago and have agreed to talk to us about why organ donation is so important. I think it will be an incredibly emotional day and I am nervous as I don't want to get too upset and make anything worse for them. They sound like truly amazing people and I am very much looking forward to meeting them.

I shall leave you with a few pics of the Saturday. YAY!

Oli Nelly and myself
Team Nelly!

2008-10-26T10:15:00.003Z

YAY!

One of our superstar advocates, Holly Shaw, has got her new kidney!

It's very early days, but so far so good. If you get a minute please do pop along to her blog to leave a message of support - I know it will mean so much to her when she reads them.

Thank you.

2008-10-24T08:58:00.005Z

It's been a sad 24 hours as we lost Toria (above) after a long and valiant struggle with CF. Toria leaves behind not only a grieving family but an 8 month old little boy. Take a look at her blog at some point; she was an extremely talented and open writer and it’s well worth a read. Along with feelings of heartache for her family, it has raised some hot emotions and some frank confessions.

I don’t really want to write too much on the subject as the most important thing is to remember Toria and what a wonderful vibrant and strong person she was, but to the Anon commenter on Oli’s blog, his feelings were only as judgemental as yours. Humans feel deeply and passionately and sometimes feelings are driven by emotion. No one can help that; that is why you wrote what you wrote and why Oli felt what he felt (which he is shrewd enough to observe about himself in his blog). As far as Toria goes, I’m just so saddened; she was a truly feisty woman who I was privileged enough to talk to on many occasions, and will be greatly missed by everyone who knew her. Thinking of her wonderful family, L and E at this sad time.

Moving on....I had another blood test last week which brought me back down to earth with a bump as my creatin (or apparently creatinine? Did I make the first up?) has risen again to 134 – highest it’s been. Humph. I am awaiting further instruction from Harefield. I’m feeling great (yay!) but I suspect they will want to try this new Immuno and have to confess I’m scared. Scared because I have been so so lucky. No rejection so far (touches wood 1000 times) which is almost too good to be true. And the cyclosporin is the only drug which I have been on consistently since day one, so it’s hard not to attribute my good fortune to this.

As always, the most important thing is to listen to my team, so this is what I am planning on doing. They’ve seen all this before and have told me already it’s a fairly common side-affect of cyclosporin, so whatever they say goes. Even if I do have a bit of a pout about it. My potassium was too high to but a) I don’t know what that means and b) apparently it can be caused by the “trauma” of taking the blood (I had 5 attempts with two people trying) so they’re just going to re-do the blood tests; probably nothing at all to worry about.

Lung-wise? They are awesome. Work wise? I am happy, busy and feeling very fulfilled. Life wise? It rocks and I love it.

2008-10-20T09:19:00.003Z

I've had one of those weekends where you're just doing bits and bobs, but loads of wonderfully lovely bits and bobs.

Catching up with friends, visiting people you've been meaning to go and see but keep not getting round to, cleaning the house and feeling the satisfaction of it being all sparkly and tidy, seeing family, resting and relaxing in front of guilty-pleasure TV...

It's weekends like that when I reflect back on how it used to be. There was no option to suddenly decide to go and see people or head to the pub for lunch. I couldn't pop round to my family then rush back as I had to head off somewhere else. Everything was unconfirmed, waiting to see if I was well enough, if I had enough oxygen, and if it as a yes it was a military operation to get me out of the house. Honestly...how lucky am I!? At this point I'd like to mention a friend of mine, Rachy, who is not as lucky. Any support you can give her is greatly appreciated....by her and by me.

I am off to Manchester later on to stay with our lovely Advocate Holly. I assure you it's all for work purposes, I am spending all Tuesday at a study day at the Manchester Royal infirmary, hosting a LLTGL stand, and giving a presentation about our charity and of course about me. It'll be a long day but I'm really looking forward to it; I've so been bitten by the "giving talks" bug again since doing the Justgiving one.

Just give me an audience, and I'll talk at them...who knew that my teachers' biggest concern at school ("Emily talks too much". "Emily is a bright student but needs to concentrate more and not get distracted") would turn into such a bonus? woohoo!

Oh and one final random comment - can anyone involved in design and/or fashion please drop me an email? Thanks muchly.

2008-10-16T10:32:00.002Z

Click here to see a photo of me being extremely professional at the Justgiving Talk. Suggested captions in comments section on the LLTGL blog appreciated ;)

2008-10-13T14:28:00.004Z

Last week I did a talk at the Justgiving away day. For those of you who don't know, justgiving is an online service that facilitates charitable donations online. I have been using them for years for the CF Trust, and LLTGL is now registered with them as well.

The talk went really well, and I loved meeting everyone from the JG team - a very friendly bunch who kept bringing me cups of tea and were just very sweet, thanking me for coming to speak to them about my personal fundraising experiences. You can read their account of the day on their blog.

One of the organs which seems to be surrounded by the most misconceptions is the liver. (By the way I am off on one about transplants in case you hadn't gathered)

Unfortunately I have met people who have said they have said no to donating their liver on their organ donor card as they "don't want some alcoholic to waste it". Whilst I see that this is an understandable concern it saddens me. After all, perhaps if my donor had declined to donate their lungs in case a smoker ended up with them I would have died.

It's all so personal, so dependant on perspective, belief and choice. I actually find it really interesting how some people seem to be more reluctant to give certain organs. I know a few of my friends find the idea of donating their corneas too much to contemplate. I also never realised (until I read this blog) how important it is to tick "all" as some things (such as the small bowel) which I would have assumed was an organ do not have their own box on the organ donor card.

So anyway, this video I think demonstrates just why the liver is such an important organ and shows just who is waiting and hoping for that call, and who you actually might end up damaging by not ticking that box.

Click to watch a video on Bethany's Transplant Assessment. Speakers on...

2008-10-09T07:52:00.003Z

Apologies for the slight delay in blogging, I have had a very busy (but fantastic) 2 weeks being a Tour manager around London and France. Anyhoo, back to the world of the real (as opposed to eating dinner with Minnie Mouse, pic hopefully to follow) and things are no less hectic back here!

Without going into too much detail I had a not very pleasant couple of months a while back, and was finding myself crushed under things which gave the pretence of being vitally important but which in actual fact, weren't. It's easy to lose perspective when someone is in your ear persuading you to dedicate all your time and energy to something that if you stood back and took a look, was never really that important to you in the first place, and certainly wasn't helping anyone (something I have since realised is pretty vital to me for fulfilment purposes).

Now I look back I am surprised at how easily my confidence was crushed; I would have thought I'd have more emotional strength than that but then again it is a new world now, one in which I feel I don't have much experience in and certainly less than my peers, so it was easy to believe that when told. It feels like it would be so easy to now say "I want to stick to things that I know I can do" but I think it would be much healthier to keep on trying new things, and learn what else is out there.

I think I might have mentioned before an advert I've seen on the tube which says something like "there are a million different ways to change the world. Find yours." I've already found mine, I know what it is and what I'm good at and what I love to do with all my heart and soul. And when I am kept so busy that I don't have time to even glance at it, I become frustrated and unsatisfied. I just now need to work out how to balance necessities of life with doing what I love: helping people and raising awareness for a cause that is so near and dear to my heart.

I'm still a little lost, but I'm getting there. I have a map now (I think) but it's in Spanish and it's upside down, but at least it's there and I'll slowly start figuring it out. I'm learning that I am good at stuff again, and feeling more confident and gathering myself together again, to how I was. Surely nothing is worth losing your sense of self over is it.

A little cryptic? Sorry. As often happens this blog is more for my own benefit than for my readers. Have a picture to make up for it.

2008-09-25T08:23:00.005Z

Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.

LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.

Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme.

To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc. http://battlefront.co.uk/campaign/the-gift-of-life/

Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4.

Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...

http://battlefront.co.uk/campaign/the-gift-of-life/

2008-09-22T12:12:00.001Z

I am still on a total high from Thursday night and can’t quite believe that we won. We are an award-winning charity. LLTGL are the Campaigning Team of the Year. It all just seems too incredible to contemplate. It seems like only yesterday Emma and I were sitting surrounded by thousands and thousands of plain T-shirts, trying to decide the best ones to use, completely unaware that what we were about to start was going to grow to be so huge.

On Thursday, me, Emma, Oli, Jen and Hal attended the Charity Awards 2008, knowing we were finalists in the Campaigning Team of the Year category. We were all totally over excited but figured that we wouldn’t win (see some of the competition to see why!) but the experience would be amazing.

The Royal Lancaster looked beautiful and everyone was beautifully dressed and buzzing with excitement. We were by far the youngest Charity there. Oli and I looked at the table plan and started giggling. We were table number 37....of 37. Right at the very back. Clearly we were not going to win as the winners had to make their way up onto the stage to collect their award.

Everyone was asked to take their seats and dinner was served. Unfortunately (and presumably due to the amount of foods which are on my “not allowed” list) I was served a plate of fruit as a starter, however the main (guinea fowl) and pudding (chocolate) were gorgeous. We were on a table with the Football Foundation and GAM, both of whom were lovely.

As you will have seen by the video clip by now, we genuinely didn’t think we would win. That shake of the head I give just prior to the announcement is to Emma, as just before that the charity who had received “Highly Commended” had been announced and that was what I was hoping we might get.

From then on it’s all a bit of a blur. We headed up to get our award, people cheering all round the room, and when we got onto the stage I grabbed the host and said burbled something about how most of us were transplant recipients. Unintentionally this outburst got me 20 seconds on the mic to the entire audience, which means we were the only charity who was allowed to speak during the whole ceremony! (How’s that for PR...).

The rest of the evening was just fantastic. People from other charities and organisations were coming up and congratulating us; everyone was so sweet and so touched by our charity and our backgrounds. It was a truly amazing night, and I think I can safely say that we all felt incredibly privileged to be there. It also reminded me how strong we are as a charity; we have virtually no funding, we have no employees, we do everything ourselves and everything on a voluntary basis. Yet all round the country, people know who we are and are cheering us on.

Live Life Then Give Life is an award-winning charity. And we are well and truly here to stay.

2008-09-19T11:53:00.002Z

I will write all about it later but for now take a look at this (speakers on).

The winning Campaign Team of the Year is announced.

YAY!

2008-09-18T10:28:00.006Z

So I'm sitting by my computer, doing some work on intoto (plug plug plug) when the phone goes. I answered, and there was just a muffled silence. After saying hello a few times I began to get a little worried; there were rustling noises and I could hear someone but couldn't work out what they were saying.

Was I being stalked? Why wouldn't this person hang up or answer? My imagination began to run wild (I've been watching too much CSI recently) and I got up to make my way to the kitchen to find rolling-pin-type-weapon or similar when I noticed my mobile (which I had been sitting on) was lit up with "Home" on the screen...

In other, more intelligent sounding news, we are off to the Charity Awards tonight. We are up for Campaigning Team of the Year. Looking at the competition I think it's unlikely we'll win (we're tiny compared to the other Charities!) but what an honour to even get to go! Wish us luck and watch this space for all the gossip....

ps - I typed dappy blonde into google image search to find a pic to accompany this tale and was less than impressed that result number 7 is in fact, me. Well my feet. Perhaps I should take the hint.