"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.

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.

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...

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.

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.

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...

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!

Last night I took part in what will hopefully be the scariest ever media…thing I will ever do.

I was asked to appear as a “Witness” on BBC radio 4’s Moral Maze. Naively I said of course I would and brightly informed the researcher I’d been on You and Yours at which point she said “erm, Moral Maze isn’t quite as...friendly as that.”

It turns out that as a witness you go into the room to be cross examined by members of the panel. And what made me determined to go no matter how terrified I was was one of the panel was the woman who wrote this.

One of the worse cases of irresponsible journalism I have ever seen. I cannot however just write that, as that would merely be bitter and accusational without laying out my qualms with her piece. So here they are.

“The news that Gordon Brown has thrown his weight behind a move to register everyone automatically as an organ donor unless they opt out has all the hallmarks of a major spin operation….If this is supposed to assist Mr Brown’s new year campaign to restore his waning political fortunes, it’s a pretty rum way of going about it.”

Straight away this makes no sense. I will freely admit now I do not have a political brain, but I don’t quite understand how raising an issue as controversial as opt-out can be seen as a political move to gain favour with the public. Surely he’d pick something more people were passionately for, rather than one with such heated debate if it was all about gaining votes?

“There is no more fundamental human right than control over our own bodies and what is done to them, both in life and death.”

Totally agree. Which is why whatever system we have there must always be choice. And there is. Opt in, or opt out, whichever system, the person chooses their final stance on the matter.

“The inescapable implication of a donor opt-out is that we no longer possess such control. The presumption instead is that the state controls our bodies and can do what it likes with them after it declares us to be dead.”

This is the thing that bugs me the most – this discussion flying around that our autonomy will be breached if we switch systems. Firstly autonomy means the right to make your own choices so that’s fairly self explanatory as to why the whole argument is invalid, however lets assume that it’s not and take a closer look.

Again it’s an illogical argument, unless you are saying that in the current system the 70% people who wish to donate their organs are having their autonomy breached. I suspect if I’d had a chance to ask Ms Phillips that she would have said “no because they can choose to donate” and that’s exactly my point, in an opt-out system you can choose to opt-out. And it makes no sense giving more moral weight to the right not to donate than it does to the right to donate. So either way according to her, people are being oppressed, well in that case the logical move would be to oppress as few people as possible, thus switching to presumed consent so only 30% have to opt out.

“There is, however, a yet more fundamental objection to the opt-out proposal. This is the serious doubt whether people whose organs are harvested are indeed dead.”

This part of the argument is what incensed me the most. People getting their knickers in a twist about their rights is one thing. Claiming that people who are brain-stem dead (BSD) are not actually dead is just plain wrong. And it’s scaremongering. And worse than that she’s now not arguing against opt-out, she’s arguing against organ donation as a whole.

I figured that I didn’t know enough about BSD to counter her on this so I researched it. Which is fairly easy to do and I urge anyone who is now nervous to do the same. The brainstem controls our body’s unconscious functions – all the things like blood pressure, gag reflex, pupil dilation, temperature control, water/insulin balances…these things the body does automatically to keep us up and running. And the most important one (as I see it although perhaps that’s because it’s closest to home) is that it controls our ability to breathe.

To test for BSD there are a number of comprehensive tests carried out at two separate times by two separate doctors. Both must have more than five years medical experience, one must be a consultant. Neither can have anything to do with a transplant team. One of the tests they do is they unhook the ventilator for 10 minutes and monitor the blood gases awaiting a reflex breath when the Carbon dioxide level gets to the stage where it would trigger a breath in any living person.

“As a result, people are declared dead while their heart is still beating unassisted and blood is still circulating round the body.”

If she’d read any of the medical documents floating around (which I assume she must have and just chose to ignore this) the heart will stop even if the person remains on life support within hours to days of BSD occurring.

“Some give ‘brain stem dead’ patients a general anaesthetic before removing their organs. But whoever heard of anaesthetising a corpse?”

First of all I couldn’t find any reference of a GA being administered. This doesn’t mean however that it isn’t as I might have been reading all the wrong articles. However she goes on to explain that the reason a GA is administered is due to the abnormal rise in blood pressure. What is supposed to control blood pressure? The brainstem.

“Doctors are discovering that, among patients in a persistent vegetative state whose brains are presumed to have stopped functioning, there is in fact a large amount of brain activity.”

Completely different scenario and I feel she is deliberately playing on people’s misconceptions and fears here, as PVS is not BSD therefore has nothing to do with the tests done before organ donation.

‘Since the patient is not truly dead until his or her organs are removed, it is the process of organ donation itself that causes the donor’s death.’

This just made me want to cry. Imagine all those wonderful donor families out there who have up until now been taking some comfort from the fact they saved lives with their decision and are suddenly panicking that their decision was the thing that killed their loved one. To anyone reading this in that position, as I said on the radio, if you had said no, all that would have happened is they would have turned off the machines and your loved one’s heart would have stopped. They would have died and no other lives would have been saved through organ donation. They were already gone.

“A system the public believes embodies the highest form of altruism rests instead on deception and unlawful killing.”

Again I merely view this as scaremongering – using highly emotive language which she has not been able to back up in her article. Interestingly when asked if she would donate her organs she totally avoided the question. I also wish I could have asked her if she would accept an organ if she were to need one, or if a loved one of hers needed a new heart how she’d feel...mind you I’m sure she would have an answer for that too. Shame she was too cowardly to voice it which would have made me a tiny bit more respectful of her viewpoint if she'd said at least that she'd refuse an organ should it come to that.

OK rant over. But boy was it tough live on air. I hope I came across ok. Oh and before I get told off for not telling people, you can listen to it here (click on listen again).

The one thing the whole debate did make me think twice about is the presumed consent idea removing the gift element. I need to do some more pondering on that one before I come to a conclusion. I also believe that with all the huge misconceptions and myths floating around, months and months of education and reassurance would be needed before any kind of switch if one was to happen. And in the meantime the government has pledged £11 million to help fulfil the ODTF’s 14 point plan (readable here) so let’s just wait and see if they honour that...

Potential GMTV appearances tomorrow morning...probably around 6.30ish and 8.30ish.

so look out, those of you up at that ungodly hour!


Edit - I was on at 8.30ish. Clip is actually viewable here - http://www.gm.tv/index.cfm?articleid=24657 - scroll down to find "Emily Thackray". Watching all the old bits of VT of me pre tx was actually quite emotional, particularly the final one which was filmed less than a month before my transplant. I can't believe how fragile I look and how quiet my voice is!

They cut it short sadly which means you don't get to see my lovely sisters have some input! Oh and the surprise was merely my announcement so don't get too excited ;)

I'm in the Daily Express today.

In other *stop press* news I saw a photo album yesterday that was bright pink, and had a big princess tiara on the front which lit up and sparkled at the touch of a button!! And I refrained from buying it...

Go out and get one if you want to see me trying to look casual whilst standing slightly awkwardly. The paper, not the photo album.

Edit: It's viewable on line, sadly without the posey photo. (Thank you to Jayne for trawling the internet in a desperate attempt not to have to leave the house) Click here.

So National Transplant Week is coming to an end. I am really thrilled with our contribution, we haven’t counted up yet but we know that we have had hits on TV, radio and in newspapers around the country - both local and national - and we have some potential magazine articles too. Every bit helps really doesn’t it. A few links to some of our stories can be found here here here here and here.

Richard and Judy on Monday was great fun. It was lovely seeing Judy again as I haven’t seen her since I was in ICU and unable to speak, sit up, or do anything really. They were really lovely and welcoming of me and mum, and we had a great time. My mother, who had been severely warned against any misbehaviour, was fairly well behaved, only letting the side down a few times. Once was throwing herself rather too enthusiastically at Richard just after she had had her lipstick done by makeup, and the other spilling red wine down herself in a fit of over-excitement in the green room. I will forgive her though as she was very good onscreen and spoke very well. She may be allowed to come again, we shall see. Nick Ferrari was lovely too, and said hi to me the next day on his show. Yay!

On Tuesday, Em and I were featured on the ITV news, Em sadly reduced to nodding capacity (although I feel that that nodding added a great deal to the interview). Oli has also been on TV this week (BBC), as has Robyn (GMTV for Transplants in Mind), and a few of our other friends. Essentially everyone has done really well and I am so proud and grateful of all our volunteers for putting themselves on the line and speaking out about their experiences. I will be contacting UKT next week to find out statistics as to the week and to see just how well everyone has done.

I also did two 6th form assemblies this week. That was an interesting one, as I haven’t really done that age group before. I felt both went well, and loads of them came up afterwards to take leaflets and ask questions, and of course to take sweets (UKT do these little blue and red sweets which are, funnily enough, rather popular). Whenever I do these talks, I always start by asking 2 questions. 1) Who here knows they are on the organ donor register and 2) who here knows at least one member of their family who is on the organ donor register. I would say less than 20% raise their hands, and interestingly it is generally the same group of people that raise there hands to both. That to me demonstrates just how important talking about it as a family is. I am doing more and more talks on the subject and really enjoying it, particularly when it develops into a discussion.

All in all a great week. Loads of people round the country have been working so hard to raise awareness, and humblingly (I may have just made that word up) of course not all of them are directly touched by transplant, they just want to do their bit. Excitingly on a personal note, I am off clubbing tonight, first time with my new lungs. Last time I went I was wearing my oxygen and carting around my big gleaming white cylinder; had a great time, but suspect this time may well be easier and somewhat lower profile...

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

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

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

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

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

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

One of the people I was referring to who I was on the ward with lost his battle to CF on Saturday night. He was a member of the CF community who use the message boards, and I had been in hospital once or twice with him. Sadly it is the same story; he waited, hoped and fought for a transplant which never came. I spoke to his mum quite a bit on the ward as when I saw her sitting in the corridor, all I could see in my head was my mum having to wait outside the room whilst they worked on me when I was so ill in the summer, so I just sat with her and we talked about anything and everything really. It is always very sad when we hear of a fellow pwcf’s passing, and I think particularly poignant at this time of year. It makes me all the more determined to enjoy and appreciate my Christmas.

What I omitted to mention in yesterday’s blog was the tremendous busyness that has been the last week. Someone (ahem - Emmie) came up with the bright idea of launching a Christmas Live Life Then Give Life campaign – a sort of mini-media hit revolving round the idea that this is the season of giving and goodwill, and linking that in with the gift of life. We are already working on quite a big project (all will be revealed…) but Em’s ideas are usually good ones and we like to keep busy, so true to form we stumbled forward enthusiastically without really stopping to think it all through.

We emailed various people we know who have been touched by transplantation and a whole host of them wrote back saying they would be more than happy to take part. We then came up with the bright idea (the majority of bright ideas associated with me are followed subsequently by the phrase “it seemed a good idea at the time) of learning to write press releases ourselves, as our Media Guru who usually does them for us is juggling about a million and one projects at present. So under her careful guidance, we attempted to sit down and write a press release for each person. Seemingly very simple; in reality, oh so not. Actually I don’t know why I am trying to make it sound as if I didn’t enjoy it because I did, I loved every minute (apart from the late at night minutes where I couldn’t get the wording to sound right and wanted to drown my laptop in the sink). We worked pretty hard on them, as these are not only important to us because of the awareness raising potential, but each individual story is about someone’s life, someone’s struggles and someone’s emotions therefore you have a responsibility to do each one justice. Excitingly every single volunteer had at least one result from their press release, be it a local paper, radio station, or TV. One of them even made the community presswire (a national newsfeed) and can be viewed here. We are overjoyed at this response, and of course very grateful to each and every volunteer, as without a "face" there is no story therefore no awareness (the family featured in the community presswire release won't even benefit directly from this which makes their effort all the more humbling).

I’m so glad I have this to keep myself busy with, as my lungs have been struggling a bit since I got home. I was feeling so much better when I escaped from hospital therefore dived back into life with a great deal of enthusiasm and energy which they were incensed by and are having an almighty strop this afternoon. It’s hard, very very hard, not to get despondent about this; I disappear off into hospital and somehow in a child-like naivety I still expect to come out better. However the team did say to me that this might not be an infection it might simply be my new “level” in which case I need to learn to manage it, rather than focus on improving it, and a hugely simplified way of managing things is doing less. Easier said than done when talking is the ultimate problem…I think I am quite lucky it is talking in a way, it creates a rather odd situation where at one end of the scale ultimately the most frustrating and difficult to comprehend thing to find labouring, but at the other those exact points create an amusement factor based on the irony of the whole situation which I think keeps me sane. Or insane depending on your view point. This is turning into incomprehensible waffle, I think I should stop. Now all I need to do is take that piece of advice and self-discipline and apply it to my every day talking habits…

Wednesday night, I was sitting on the sofa, in my usual pretence of resting whilst actually working on campaign stuff and generally mucking around on the net. Suddenly a message appeared on one of the forums I use saying it had just been announced that Gordon Brown’s son has been diagnosed with CF. Bemused I turned on the TV and watched the news item which was by now on most channels. Then when I saw Nick Robinson’s report which mentioned my speech at Downing Street two years ago I realised things may get a bit busy, which turned out to be a rather accurate prediction.

The phone rang as I was still watching the news that evening and marked the start of what was to be a rather hectic 24 hours. On Thursday the phone first went at 8.30am and then rang pretty much continuously throughout the day. Thank god for A’s mum and my mums friend who both made the mistake of popping round to see me and found themselves fielding phone calls, taking messages, welcoming camera crews, and their most formidible task; forcing me to shut up and lie down for five minutes to rest, as well as eat and drink in between talking.

I am a CF Trust ambassador (along with my partner in crime Oli who was equally rushed off his feet yesterday) so I expected and welcomed the job of explaining CF to various people in the media (plus of course I featured yesterday as “the girl with CF who did that speech”). I spoke to a couple of newspapers (two of the articles viewable here and here), did a radio interview, and quite a few TV interviews, with the last camera crew packing up and leaving around 6pm. Consequently I am being meticulously behaved today (relatively speaking) and am staying in bed with my high-flow mask on, which tiny lungs are very much appreciating.

As you may have gathered from this blog, I enjoy telling people about CF and my life with it; I find it cathartic and that it alleviates some of the feeling of helplessness which accompanies my present situation. Doing ambassadorial work has presented me with opportunities, and more importantly has allowed meet a variety of different people, and continues to facilitate what for me is this vital link to normality – I don’t think people realise just how much social interaction is created on a day to day basis through simple things like at the station, at work, and at the supermarket and other seemingly mundane activities - even now I am quite restricted due to oxygen and general refusal of compliance from my lungs.

As for the overall trigger to this mass media interest in Cystic Fibrosis, my thoughts are well and truly with the Browns, as it would be with any parents learning of a new child's illness. I do not know what it is like to be a parent who is told that their new baby has a life-threatening condition, but I have talked to my parents about their experience and spoken to various families and parents about their experiences. When I was born, my parents had the choice and freedom to tell who they wanted how much they wanted, and to come to terms with CF in their own time. As I understand it a newspaper broke the story on Wednesday night, so consequently this is a freedom they do not have, and regardless of who they are they will like any parents be trying to adapt to life with CF as a family.

Cystic Fibrosis is not a trivial matter, and it can be a terrible illness. There is absolutely no point me saying otherwise as my present circumstances would completely belie any such statement. But what I tried to make clear in any media I appeared in is that Cystic Fibrosis is a part of your life, it does not dictate who you are or the life you lead. As I said in a previous post, when I discussed how we use the label of an illness, the mere diagnosis of having Cystic Fibrosis does not instantaneously qualify for or except you from anything. The fact that you have CF will not change regardless of how you decide to view it and so the statements released on behalf of the Browns which say that they are staying positive and optimistic and focusing on their healthy fit and thriving baby boy reveal a fantastic attitude and one I agree with.

When the CF Trust was formed in 1964, cystic fibrosis was a childhood illness, with an average life expectancy of just 5 years. By the time I was born, this had risen with predictions that I may well reach my 20s, and for children born today with CF, the outlook is even more hopeful again, with a current life expectancy of 31 and rising with funding and research allowing for constant improvements in care. For me CF has wreaked havoc and indeed wrecked my lungs, but not my life. I am determined to try and keep a positive attitude; I don’t see what harm staying optimistic will do and it may even help.

Anyway I still have a whole lot of living to do.

How is it that at a time when I am supposedly in hospital therefore stereotypically should be bored and isolated, locked away from the world, the world seems to find me and keep me rather busy? This is by no means a complaint, it is fantastic stuff for my mental state, and I am loving every minute. Giant mummyhand has disappeared by the way, and been replaced with new line in right arm, so typing is much easier. Although it was still my main feature when I went on day release, sorry day leave (sounds less Prisoner cell block H like) and some friends and I came up with the idea that I could make a few quid if we propped me up on the roadside with a bucket of soapy water, and hey presto a ready made window cleaning device.

So yes, had a lovely 24 hours at home, including a fabulous celebratory lunch for Lucy’s birthday and a wonderful concert performed by A’s choir, and returned to the hospital yesterday afternoon, tired but very smiley. Whilst resting and absorbing something culturally stimulating on TV, I got a phone call from gmtv, asking if I could appear on the programme the following morning (today). The reason is as follows (bit of current affairs education for you now) The human tissue act is bringing about key changes in the law tomorrow, several will have strong implications for organ donation. I attempted to write a clean, brief and concise summary of the changes, failed spectacularly, and have decided to copy and paste the following which was written by Emma:

1. Relatives will no longer have the legal right to overrule a loved one's wishes to donate organs and tissue. So if someone during their lifetime has made a specific effort to declare their wish to be an organ donor after their death (by having signed the NHS Organ Donor Register or carrying a Donor Card), then their wish to do so will be protected in law and fulfilling those wishes will be a priority for NHS staff. However this certainly does NOT mean that organs will be removed from a person who has chosen to be an organ donor without their family's knowledge. The family will be fully informed of everything all the way along and if they object strongly to the person's wishes being carried out, healthcare professionals will discuss the matter with them sensitively and attempt to encourage them to fulfill the deceased person's wishes.

2. Live organ donation will be allowed to take place between strangers, providing that full consent is given. This mainly relates to live kidney donation and will allow someone to donate a kidney to another person to whom they are not genetically linked (parent/child) or emotionally linked (husband/wife). One particular option that this opens up is called "paired donation". Under current legislation, a wife can donate to her husband, but only if her tissue type matches his. However from tomorrow this couple could be paired with another couple in the same situation, where wife A donates to husband B and wife B donates to husband A.

Sciencey bit over…I was thrilled to be contacted by gmtv but explained I definitely didn’t have the energy to make the journey to the studios to be interviewed. However much to my surprise they were very keen to feature me anyway so set the wheels in motion to gain permission from the hospital to film here. Thus at 5am I woke up, washed my hair (when you are going to be on TV there’s no time for groggy half asleep lungs) and sat back on my bed with a fetching towel turban, feeling smug that I was in plenty of time. Sadly this was premature smugness as the next minute the crew burst in and started setting up to go asap. In a panic I frantically tugged the towel off and began blow-drying hair with visions of manic sonic the hedgehog style backcombed wet look being splashed across the nation’s screens. Luckily my hair is so thin and whispy it dries in less than 1 minute, so somewhat puffed but with suitably tamed hair I sat down and we did the first interview.

I did two for gmtv, 2 for ITV news, one for southern counties radio and apparently was on channel 4 and capital radio as well, which came as a bit of a surprise, but a pleasing one as they had simply used extracts of the above interviews and the more awareness raised the better so I’m not complaining! One of the interviews can be seen at www.itn.co.uk/ then click on “A transplant patient’s plea” on the right hand side. My lungs were utterly exhausted by the end of the first set (although to be honest frantic and silly hair washing first thing may well have contributed - the price of vanity) but I slept in between the interviews and then all afternoon, and so feel very much refreshed and smiley this evening. It has been a fantastic day awareness wise and lots of people have been using today to raise awareness so well done all! The interviewers and the crews were lovely, and I received a phone call from Andrew Castle from gmtv, to say well done and that he has been wearing his T-shirt out and about (yay!) which I thought was very sweet of him.

I am even more chuffed that I still managed to get a training session in, and the physio said my breathlessness was pretty good considering I hadn’t shut up since 5am (she worded it far more politely). Apparently when she was first sent out to visit me she was warned by my other physio “now when you are working with Emily she will keep talking. Do ask her to stop and concentrate on walking but she wont. Keep asking, but you will soon see she just can’t help herself so then give up”. Anyone who knows me will surely agree this counts as character assassination or similar.

It is National Transplant Week!

And oh my goodness has it started with a bang! We marked the launch by attending a function at the House of Lords. Prior to going in, both Emma and I were interviewed by ITV (which was shown last night but I missed it) speaking about the campaign. We then went in the entrance just next to the Sovereign's Gate, so near enough to listen to several speeches about Transplant and organ donation, one of which was given by me. My lungs were really not in a cooperative mood that night, and I struggled for breath on several occasions. Luckily Emma appears to be able to read my mind and was able to smoothly glide in wherever necessary and allow me to regain my breath. It all went really well and we got a huge round of applause, as well as some tears. I hate making people sad, but it does mean that I have managed to get the message across so I have to take it as a good thing. BBC article went up at the weekend, can be seen here should you want to read it.

Then today was a whole day of media madness. It began with a 5.15 pickup, (I had forgotten such a time existed) to go to GMTV for two interviews. We did the first spot at 6.45 and then a second at 8.10. Both seemed to go ok, I was nervous but just about managed to babble coherently! I have never minded the feeling of nerves, but now my lungs are teenywee, my heart tends to go a bit doolally whenever I am nervous/stressed/angry and cause me to loose my breath. I got away with it at GMTV, but we then went over to ITV news (where I curled up on the sofa and promptly fell asleep).

We walked into the studio with about two minutes to go till going live, and I sat down and lost my breath. Had a slight panic as I couldn't get it back, and they were counting down "40 seconds" etc till we went live, but the correspondant was lovely, and we decided to just go for it and hope that I could get through it which I did, yay! Whilst I am annoyed at myself for panicking for a minute before pulling myself together, I am rather proud of my little lungs, and just glad that I got to do all three, as the amount of coverage and awareness generated from that is fantastic. And of course thanks to Denzel the wheelchair, my 02 cylinders and my travel concentrator, I managed to look like a Mariah Carey style diva, only with less lillies, more oxygen...

Yet again time has flown by with all sorts of busy-ness taking place. Sarah's fancy dress party was a great success, with some wonderful costumes (one girl coming as the sea which I thought was fab) and I thoroughly enjoyed wafting around in my full satiny dress playing the princess part rather well.

When christmas shopping on monday, I receieved a call from Richard and Judy, to ask if they could feature me the following day. In a matter of hours the camera crew was at my little house, rearranging my furniture and then filming footage that would be used to create a short VT to be shown along side Heather Mills-McCartney's appearance supporting the donor family network.

I watched the R&J show on tuesday night from the comfort of the largest bed I have ever seen, as my man and I went away for a luxury break at a gorgeous hotel which had beauty treatments and a spa, and we thoroughly enjoyed ourselves! Watching myself cry on TV was slightly strange, and weirdly made me cry again (how egotistical!) but I think that it was quite a powerful clip, and if even one person signed up after watching that then it was worth doing! Incidentally you can watch the clip here I believe (if that hyperlink has worked I am in fact a technological genius. Fact.)

Am now off to wrap christmas presents as I really should have finished doing so and havent.

Wow, what an insane week!

I have loved it though, it's ages since I have been this busy and I am thriving off it! Saturday the Times article came out, then monday I spoke to the Daily Mirror. Tuesday another journalist came over to interview my mum for one magazine and me for another, and Wednesday was GMTV. Then today a photographer came for the Mirror piece and I had some more questions to answer for the magazine interview. And the highlight of the week being my sparkly shoes made a guest appearance on GMTV because the camera zoomed out to show my O2 cylinder! Woohoo!

So what a week it has been!! The magazine interview was very tough emotionally, as my mums interview was first, and obviously they ask some extremely taxing and probing questions which made her quite upset at points. It is heartbreaking watching my mum cry, I am fiercely protective of her but extremely proud because she did an amazing interview despite finding some of it very hard. But she says she also found it incredibly cathartic, which I do too, and so I think she understands slightly better why I do these things.

I have put a link up to the Times article, for anyone that wants to see it that hasnt already! Hope everyone else has had a simply splendid week...I am looking forward to a good quiet weekend snuggled up in the warm. Oh and lungs have started to comply again and the pain is much better so a big yay for that!

Wow, the last few days have been crazy! The times piece came out on Saturday, and I was really pleased with it. Thanks to a fantastic journalist, Hilary Freeman, all the key issues I wanted to raise were clearly put across, and she had used a lot of my own words and writing as well. So a big thank you to her and to the Times for doing that brilliant piece of awareness raising.

I have had an incredible response from it all, and I spoke to the Mirror yesterday, am speaking to a journalist for B magazine tonight, and hopefully an appearance on GMTV tomorrow morning! It is all a bit overwhelming, but I did this with the intention of getting heard, so I am going to take full advantage of my privileged position of being able to speak up about these things while I can. It is all very cathartic for me as well, because whilst it is difficult speaking about my inner most feelings on the matter, it is helping alleviate the feeling of helplessness which accompanies this situation.

I received some really lovely messages and emails from people as well; whenever anyone starts doubting society they should come to me as I have so much proof of the amazing human kindness that is out there.

Health-wise, things are ok, although my chest muscles appear to have gone on strike, and I am getting rather a lot of grief from them in the form of pain and difficulty breathing. The physio came out to see me this morning, and my stats look ok, so I we aren't taking any action just yet. Hopefully my lungs will get over their little strop and start complying again soon!