Got a text from Gaz’s mum this morning when I was out and about “OMG, it’s here, the hydro pack has arrived...seems v real!” Rushed home and opened the door to promptly trip over my very own Hydro active pack. I took a little more care than last year (where I may or may not have ripped the edge of the number due to over excited opening) And there it was. My running number. Well walking number. Imagine my surprise too when I opened the magazine to find my masked and fairy-dressed self splashed across the CF page. Am v honoured that they chose that pic, it was very strange looking at it thinking that was only a year ago.

It all feels so different from last year, preparation wise I mean, as this time I am actually walking the whole thing. I really want to push to get our sponsorship up now; if anyone is reading this at work, maybe you could send the link (www.justgiving.com/emilysangels2007) round and ask everyone to donate a pound or something…every little helps! I have purchased new jogging bottoms in the hope that this somehow makes me go a bit faster and further in my training. Said joggers are also intended on preventing me from going to the gym in my PJ bottoms ever again. What can I say, there’s dedication for you.

Last year in September sometime, I put a stats counter on my blog, just out of pure curiosity to see what kind of readership I was getting (also to see whether it was actually just my grandparents reading this). I haven’t checked it for ages, probably not since my transplant, so got a bit of a shock when I read the current total of visits (not views, individual visits) stands at 113,028. In the last 11 months. That’s quite a lot really. Still quite comprehend that people have come to read about my life that many times, it’s a little overwhelming.

I have another two talks booked, from a lady who heard about me from her friend who attended another talk I did. I really enjoy doing these talks (waffling is after all my speciality) and leave feeling good as I think I have raised just that little bit more awareness and hopefully made my listeners think. Plus I get to talk about me and that can hardly be a bad thing...

Thank you so much to those who replied to my last post; I found the advice and support very helpful, I really do appreciate it.

Yesterday was just brilliant – I got to pretend I was a singer. A is in a band (a damn good one) and they were playing at a festival in London yesterday and required backing singers...cue Emily to start waving her hand in the air and shouting “ooh me!!” I was singing with another girl – a total pro, which was quite intimidating – but she was lovely and we had a really good time. As we were waiting to go onto the stage I was terrified; I have done lots of stuff on stage before but it’s usually acting where you are someone else, or if I am “myself” I am generally talking about me which, let’s face it, even I can’t get wrong. I am not very trusting in my voice (though I was desperate to try out new lungs’ singing capacity) and I had to sing in four different languages (no I don't speak 4 languages but apparently can sing in them, not really a talent, I just copy what I hear) which was an additional challenge!



The first song was a bit of a blur, but after that I was hooked! I loved being up there, loved the atmosphere bouncing off the crowd, the feeling of being on stage again (drama queen element showing through) and when we came of stage bounced up and down squealing. I think I will do it again some time.

I am currently in the process of writing a letter to my donor family. I don’t know when I will send it, might be in a few months, I am finding it very hard to write. I mean how do you summarise the incredible act that they made that day? How do I put into words how grateful I am, how much my life has changed beyond all recognition? Is this the right time to write something like this? Should I wait longer? Will they have already been hoping for recognition? So many questions...I think it will take me some time to write, and will remain strictly private, for their eyes only. I guess all you can do is say what you feel and hope they can gain from it just a fraction of how much they have done for me.

Exciting news first and formost; Peter got his call!! It happened on Tuesday night and the operation went on to the early hours of the morning. His wife's blog is here and is well worth a read, or go there if you want to leave them a supportive message. It's early days yet but so far so good, I am just thrilled for them.

Wednesday marked one year since my false alarm. In the morning, I went out into the garden and sat quietly at the back, just having a moment of thought and reflection for the family - wherever they are - who lost someone that day and who made the decision to donate. OK the op couldn't go ahead, but these people still made that choice, and it definitely renewed my faith that this might actually happen for me and helped keep me fighting. They were marking a very different anniversary that day....I hope it wasn't too difficult for them.

I am getting rather nervous about the hydro active now. I have been training (see blog) but probably not as regularly as I should have (real life keeps getting in the way) and am now a little scared. I mean I have come on leaps and bounds; when I first started I was doing 5 minutes at a time and now am up to 20, but that still isn't enough. I have faith in my amazing Angels to help me, but a big part of it is down to me. Will I be able to do it? The medical team thinks it's a big stretch, 5k is a long way when only back in January you had no muscle mass whatsoever and had to learn to walk again. Not to mention the whole new lungs element.

Anyway, enough fretting. I am going to try my hardest. That's all I can do really. Just under a month to go...

Gaz was one of my first close friends with CF. When I say close, I mean he wasn't just an acquaintance where the only similarity we had was our health, he was a friend; someone I would chat to regularly about anything and nothing, would phone when I was sad, would phone when I was happy, we were generally both there for each other. We set up pwcf.net together and working on that with him was so much fun...I have been bad and let it slip a bit, but with some help and support I am getting together new items to keep it updated and fresh. I know Gaz would be severely berating me for not doing this sooner.

Back in the days when cross infection policies were not as strict as they are now, we would keep each other company in hospital, making a stay somewhat more riotous than it probably should have been. Gaz waited for a transplant for 14 months. It never came.

He would have been 25 years old today. His family are gorgeous and I keep in touch with them, so thinking of them especially today. Happy birthday Gazzy, missing you and your silly faces on msn, your advice, your humour, your support and your horrifically contagious giggle that would leave us both in coughing fits. Hope you’re proud of me and you know I regularly wiggle my stripey socked toes in your general direction. xxx

This weekend was yet another landmark; I was whisked off by A for a long weekend in the North of France. This was my first holiday abroad for years, and mine and A’s first (with just the two of us) since 2001! I did quite a bit of driving and drove in France for the first time! Was somewhat nervous and kept asking if I was doing it right, which was probably self-answerable by the fact that I wasn’t passing hundreds of cars coming directly at me or anything like that.

We stayed in a beautiful old farmhouse, and spent the weekend wandering round the small local town, eating, drinking, and eating some more…generally having a really blissful time. A mentioned at one point he imagined trying to do this with Claire, denzel and co in tow; although we did go abroad with Claire when I was just on O2 overnight, it just would have been a logistical nightmare and probably impossible to do so once I was on 24 hour oxygen. We had a wonderful few days and were extremely reluctant to return home again! I still can’t quite comprehend the difference between last summer and this summer, I mean it is actually like I am a different person! Things have just changed beyond all expectation, I have my life back.

Today was back into the swing of things with a bang; our friend Peter’s story hit the Mirror on Thursday, and today channel 5 news picked it up, so I was off to the studios at midday to do a prerecord as the “expert opinion” from LLTGL (I still have to try not to giggle when the word expert is used in conjunction with my name). I only said a sentence or two so not sure if it will be used but either way Peter's story should be on about 5.30 tonight. Peter got a false alarm the day the story appeared in the Mirror and although it sadly didn’t go ahead it was hopefully a boost to him his wife and his gorgeous children that there is still a chance and if someone makes that decision a whole new life is ahead of them...

A tiny bit of wedding talk now! (Sorry I know there's a lot of people itching to know all the details but I am keeping it quiet, first time for everything...)

Anyway. Many of you may well remember this post here which was coordinated by two special people, namely Emmie and Rose. Anyway they set up "Emily's fund" to ensure lovely kind gifts and gestures went to a safe place for when I was well enough to spend it. People were amazingly generous and lets just say I had a significant amount of dream-making funds provided.

I kept it all safely stowed away as I wanted to spend it on something really special...and I thought you would like to know that I have now spent that money! I have bought the wedding dress of my dreams.

And no it does not look like this.


So each and every person that contributed, please feel safe in the knowledge that you are helping me achieve a dream which I was beginning to think was not possible, and a bit of you will be there on my special day (er our special day Em, do try to remember to include the groom at points...)

Thank you so much, all of you. For everything over the years. There is no real way to repay you all for your thoughts, wishes, cards and presents except to try and demonstrate just how well I am utilising my new found lease of life, and to remember to savour it as it truly is a gift.

Yesterday was a gorgeous day. Brilliant blue sky, deep but not too stifling heat, and plenty of bright sunshine. Consequently, my family (all members managing to have the same day off) decided to have a BBQ in this new found emerging summer. Armed with factor 40 (not allowed to sit out in the sun) I set off for my parents’ house to join them in the preparations.

We sat around the garden, chatted, wound my mother up (it’s really too easy and just begs to be done) and caught up on a pretty busy week all round. In a sudden fit of inspiration the other day, my parents decided to purchase a gazebo for the garden (possibly in the hope of persuading the sun to stay out a little more). Eager to try out this new toy, they insisted we each take a leg and try to “pop it open” just as it says on the box. Needless to say it wasn’t quite that simple and Abby and I being the weaklings struggled dutifully with our leg whilst everyone else stood back and admired their handiwork. My dad lit up the BBQ (certain things going in the oven for me as BBQ foods are not recommended post transplant) and five minutes and a billowing grey haze later we were all summoned to move said new gazebo down the garden away from the smoke.

My dad stood up at the beginning of the meal to do a toast; to a summer we have been waiting hoping and wishing for, and to many more family experiences over the coming months. As we were clearing away, I came back out into the garden to see my parents standing there hugging, and overheard my dad saying how this was everything they had dreamed, everything they had been hoping for over the last 2 years. See it’s not only my life that has been changed unimaginably for the better; it’s also deeply affected all of theirs.

I walked down to the post-box a couple of roads away yesterday evening. Everything was bathed in that gorgeous deep gold evening summer light, which seems to highlight the surfaces of everything it touches and makes it shimmer. I wandered down the road, lost in my own thoughts, enjoying the solitude and the independence that I had so desperately craved for the last few years. Everything this summer seems so new and exciting, it’s such a long time since I did any of this, and I am loving every second.

I went to a wedding at the weekend. Very interesting experience as the last wedding I went to I was (quite literally I suppose) on death’s door and so to have a comparison like that is cause for great contemplation.

This year I got up, got ready, tried to curl my hair, phoned Abby with a rushed “icantgetmyhairtogonicecomeroundnowplease” instruction. After excessive curling, I finished getting ready, jumped in the car with A, and off we set. Last year, I awoke on the High Dependency unit, my team came round and gave me a thorough examination to ensure I was stable enough to leave the hospital grounds. I had two Xrays, one first thing and one just before I went. My mum and Lucy came to get me ready as I didn’t have the puff to put my own clothes on. Then I was gently helped into my wheelchair with high flow oxygen blowing through a mask, I was carefully loaded into the car with blankets and pillows cushioning my rather skinny body.

This year we walked up the little pathway and sat in the church awaiting the arrival of the Bride. We chatted quietly amongst ourselves, admired the décor and stood nicely with everyone else as the deep organ chord announced the arrival of the bride. Last year, 4 ushers lifted my wheelchair (mind you that was not an unpleasant experience) and I was carefully maneuvered into place at the back of the church so I could get out easily if there was any problems, and I sat with A, who stroked my back trying to ease its ache, trying not to panic from the difficulty to get air into my lungs.

Both weddings were beautiful, but this year I was able to enjoy it more, able to participate fully, to dance and join in the celebrations. And it is all thanks to the decision of a family I do not know and a stranger I will never meet. It was so lovely to see all the festivities and goings on as well and know that this is actually going to happen for me too, going to be something I experience, and I suspect something I will never forget. Said wedding was also the first ever time I have been able to dance to every song A’s band played. Ever ever ever.

It’s so strange that nearly 7 months on and I am still experiencing so many firsts. Each one is magical and makes me grin from ear to ear. My dancing at the weekend was again not elegant or refined, in fact a great deal of hopping, jumping and spinning was involved as I am still relishing in the fact I can do all three. I am planning to have a quiet week; still not quite able to gage my own energy levels and managing to wipe self out a bit by getting too over excited. Mind you some things never change...

Doing some PR work at the moment so will write more later/tomorrow but wanted to draw your attention to this young lady here who is running the 10k in aid of CF having read this blog. Thought some of you might like to wish her well on her page, as it's a very sweet thing to do!

Why you should sponsor Emily's Angels...

Feeling much better mentally, thank you for all your kind words, messages and emails.

Having a slightly freaked out moment here, as I was browsing back through my blog and I realised it is exactly a year ago today that my lung collapsed. That was jolt enough but then even more freakily, the friend who was round at my mum's house this time last year (who we don't see very often) is round again, exactly a year later. This coincidence was enough to panic me a little into a rather stupid "it's a sign!" moment but I am getting over that fast. Still thought I would blog about it instead, it helps my brain clarify things (I imagine the inside of my head to resemble a tangle of pink ribbons, I don't think I am far wrong).

It's just all really quite similar, I went round, had lunch with my mum and her friend, came back here...exactly like a year ago. Mind you I did not go out salsa dancing which I did last year the night before, complete with cylinder and inappropriate shoes.

Last year was just the most frightening time of my life. Actually post transplant was pretty frightening, but at least post transplant, whenever I was concious, people were all telling me how well I was doing (even if I didn't believe them) whereas last year when my lung collapsed I could see on people's faces that I was a)not doing well and b)scaring the living daylights out of them. Over those few days where my lung was constantly collapsing, I could just see my life ebbing away in front of my eyes, and see the helplessness in everyone else as they watched on in sadness.

Here is an extract from some writing I have been doing, about last year:

They fought hard to get another drain in but by this time the carbon dioxide levels in my bloodstream were rising dangerously high. There is a machine which can help rebalance the CO2 levels called a bi-pap. This is a non-invasive ventilatory machine which pushes the air in, splinting the airways open and allowing a greater gas exchange to take place. It was quickly realised however that they couldn’t use this on me as my lung was still very much deflated, and clearly full of holes, which would only be made bigger and more irrepairable by using the bi-pap. A surgical option was discussed; previous episodes had resulted in me having a bullectomy and subsequent stapling of the remaining tatters of lung. I was deemed too ill for any such procedure. If they put me on a ventilator, I would probably never come off it I was so weak. My mum was taken aside into a room and the doctor gently explained all of the above and ended by saying essentially there was nothing more they could do. All my readings showed that my body was slowly shutting down. “Emily is strong, but even she is not strong enough to overcome this.”

There was nothing left for my mother to do but make the phone call that she had been dreading all her life, and tell my family to get up to the hospital as soon as possible. I am thankfully very unaware of most of the goings on in the early hours of that morning; it is my poor, ever faithful family who endured the agonies of the unknown. I drifted in and out of consciousness, the high CO2 levels making me sleepy and acting as a kind of anaesthetic. I woke to find my family standing at the foot of my bed. They were all in tears. My father was crying. He doesn’t cry. I requested for them all to leave the room as I needed to know what was going on; I wanted to talk to the physio alone as I didn’t want to scare my family. I asked her if they thought I was going to die. She replied gently “it doesn’t look good.”

Having heard what I needed to hear, I summoned my family back in a few at a time. I realised what everyone was saying, I realised what everyone was thinking, and I trust my team implicitly, but I just couldn’t quite believe that this was it, this was the end. I tried to assess the situation rationally. I decided that if this was what my death was going to feel like, then it wasn’t too bad. I felt fairly comfortable, strangely calm, and my breathing wasn’t too laboured. Apart from not being able to feel my arms and legs anymore, I had very few symptoms, plus I had good painkillers and good support. I knew that end of life wise, things could be a lot worse. My sisters came back into the room, tearstained but smiling at me. I was unsure what to say, I didn’t want to give them false hope, that would be cruel, but at the same time something in me was telling me that I wasn’t quite ready to go. In the end I selected simply told them firmly that I was going to fight and that “it’s not over till it’s over”

I know I have new lungs, I know these aren't collapsey, (real word honest) but I think because after the collapse in 2005 we were so sure that the summer of 2006 was going to be so much better and then it happened again....I don't know. I am just waffling really. Although that is what blogs are for so I won't apologise.

So come on Emily, instead of being scared of the past, let's have a look at what you have now: you have amazing new lungs, your life has been saved once again since that episode, you have a wonderful family, a fiance (still can't get used to saying that!) you can walk, talk, run, breathe...things are really pretty good. I suppose the anniversary of the collapse just serves to remind me how fragile and delicate life is. But instead of that making me nervous, I need to use it to push me forwards, to ensure I keep on embracing every opportunity in front of me now, and to make the most of this wonderful new lease of life.


What a difference a year makes...

Today was....strange. Good but strange. I am fairly sure you have all seen the headlines by now (if not where have you been) but I think this article by the Times talks about it all rather well.

Anyway, Sir Liam Donaldson being due to announce his support of the proposed opt-out system today obviously triggered national debate about organ donation and transplantation.

I received several phone calls yesterday and consequently found myself signed up to two GMTV appearances and a channel 5 piece. A being rather more sensible than me pointed out that since my pickup would be at 5am, I should get an early night. Oh those fatal words; as soon as you know you need to get a decent amount of sleep, the very notion of sleep becomes completely implausible. Midnight came and went. I was lying in bed with my eyes squeezed shut, like a child when they know they will be in trouble if caught awake and surely the tighter one closes their eyes the more realistic the slumber.

Next thing I know, the phone is ringing. It is my mother, panicked after knocking gingerly on the door for 5 minutes with no response. After a few hazy seconds I realise I have slept through my alarm. Three times. With the car due to arrive any minute I jumped out of bed and flung my clothes on, before attempting a calm and sophisticated walk (complete with crazymadbedhair) to the car. Thank god for make up artists is all I can say.

I think today is the first day I have ever felt properly vaguely famous. Or truly infamous anyway, depending on how you look at it. We pulled up and entered the building, along with another guest who arrived at the same time. The lady at reception greeted me with a cry of delight and a hug, exclaiming how well I looked, before escorting us through to the main area and the green room. There the lovely lady who is always busy organizing everything from the green room greeted me with another hug, again telling me that I looked wonderful. As I sat down and she disappeared to do something, my fellow guest asked gingerly “excuse me but I have to ask, who ARE you? Everyone knows you!” stifling a huge grin, I explained that I am not famous in any way shape or form, merely what might be considered a regular on there (mind you remembering me could have something to do with my entourage of tubing cylinders and wheelchairs I used to arrive with). As the presenters wandered past they would come and say hello, ask what I had been up to, and were generally all really friendly. Another guest arrived and smiled at me, so I smiled back, so she timidly said she had seen me on the telly last week and that I looked really well and she hoped I was feeling good. It was all so surreal, I am under no illusions that it was anything but my high profile...ness over the last week or so but still it was rather fun!

The interviews themselves were some of the more taxing I have ever had to do. This is because I wasn’t talking about me (my favourite subject) well I was but in relation to the opt-out system, which is incredibly complex, which I have a lot of differing thoughts and opinions on, and which is very hard to sum up in a 3 minute interview. The assumption was that I would be 100% behind the idea, but I am a little more cautious than that. So here are my full thoughts, or what I tried to get across.

In principal, the idea of an opt-out system is a logical one. The biggest cause of people not signing onto the register at present is apathy. This is proven as 90% people support organ donation but only 23% are on the organ donor register. This huge discrepancy demonstrates that the current system with the amount of publicity and education presently available is not working. The number of people awaiting for transplant is steadily increasing, as is the number of people dying on the waiting list, so something needs to be done.

I have a few concerns with opt-out. Interestingly, not with the moral ethics of it. This is because what we are talking about is called the soft-option, where relatives would still be consulted as to whether they believe there is any reason that person had wanted to opt out. Also if we were to change system, there would be so much awareness raised through media coverage and publicity campaigns that unless you lived in a remote cave you would not be able to miss the new system coming into place. Think about how much publicity there was for England going smoke free. I feel that people who definitely wanted to opt out would be more covered, as there would be a specific statement saying “no I do not want to donate” rather than at present where you just don’t happen to be on the register, this could be because of preference but it could also be taken as apathy.

I do not however think switching to opt-out would be the be all and end all, the finite solution, You cannot merely change over a system without putting into place all the other changes which would need to come with it. The key for me: education education education. I have always believed that if people do not understand a cause, why on earth would they support it. This was one of the reasons I got into public speaking for the CF Trust, I don’t think you can ask people to give money and not explain just why the money should be given. More awareness needs to be raised about organ donation, but in much more depth and detail. It should be taught in schools, the ideas, the principals, the facts, the choices. Information needs to be more prominent and more freely available. And of course all of this needs….money. Which brings me onto exactly that point; or as Oli so succinctly put it, investment in infrastructure.

I really could go on and on (you can see why I had so much difficulty summing up my opinions in 3 minutes now can’t you!) but I think I will shut up and go to bed instead. I am rather tired after gallivanting round London all day. But what a great day it has been, with most coverage being good (although some absolutely shocking misconceptions revealed both by journalists and audience/participants.) and hopefully if nothing else, today has made people think. I heard the comment more than once that someone dies every day whilst waiting for a transplant. Something has to change, needless deaths, they can be stopped...

I seem to have lost the ability to say no. I figure they must have taken it out by mistake when they removed my old lungs. Actually, thinking about it I never really had that ability, I reckon I was born with some innate fear of missing out or being left out. As a child, my hand always went up first for everything, volunteering left right and centre, not so much because I thought it was good, but because I was over eager and excitable and essentially wanted to be involved in whatever it was.

Anyway. Since my transplant, I seem to have become increasingly worse at saying no. Any invites out that come my way, any offers of trips, anyone who asks to be picked up, you name it, there’s me hopping up and down in the front row begging to be picked. This last week has bordered on ridiculous with me tiring myself out to such extents that I have been getting home, taking my immunosuppressants and diving straight into bed, sleeping soundly till I am out of bed and off and out the next morning. I am in no way complaining, merely relishing in the fact that I actually have to remind myself now to slow down. Although some of you may argue that I was on fast forward even when waiting for transplant, just in my own breathless dog-tied-to-a-pole kind of way.

I didn’t make it to a club on Friday night, I did however go to a pub with a disco which was almost the same thing and had the most fantastic time. I was first on the dance floor, and we left after jumping up and down to “Don’t stop me now” which was an awesome finale. Bouncing around waving my arms in the air (yes I did look about as graceful as that sounds – you can’t dance gracefully when you are so ecstatic about just being on the dance floor tubeless) I was really struck by the difference. I haven’t really danced since my transplant, and the tiredness was just a completely different sensation. Previously it was one of despairing finiteness, one where my whole body ached if I dared attempt half a song and my lungs never regained their puff. Now it was sore feet and sweaty hair, not attractive, but so indescribably good to feel normal exhaustion, one that does not signify your body attempting to shut down.



Today was a family outing (we do indeed still do them despite all “children” now being over 16) and we went to the Globe to see Othello. It was a fantastic production, I recommend it. We were somewhat overconfident on my walking abilities resulting in me having to get a taxi between certain parts (not within the globe that would just be silly) but other than that it was brilliant.

I am expecting next week to be somewhat quieter, although it was on the front page of the Times today about the opt-out system debate. People constantly ask my opinion on this (unsurprisingly) and it is difficult to vocalise succinctly. In essence, it seems like a great idea, but I feel it is not the solution. I feel education is the solution. I mean even if we do switch to opt-out then fine, but surely in order to do so we will have to heighten education and awareness and also improve funding for actual transplantation and donor retrieval therefore there is a lot more to it than to simply switch the system. Still I love the fact it is back in the news, keeping the thought of it in the public eye is the most important factor. Which is clearly why we do silly things like spending a whole Saturday building a giant love heart.

I am feeling a little bit wobbly as we go into this week, as it is a year ago that my lung collapsed and I was left fighting for my life. It was also a year ago then that the team called my family into the relatives’ room and told them that nothing more could be done. Weirdly my other lung collapsed around the same time the previous year. I think that one lung saw all the attention the other lung got and decided to put in a repeat performance. Obviously I know that these are completely different lungs, not full of cysts and holes and things like that which made them so prone to just sitting down obstinately, but it is still a tiny bit nerve-wracking. Although also exciting that this will hopefully be the first summer I get to experience in three years. Apart from squeaking, these little lungs are proving to be incredibly strong and well behaved, and I am hoping that we will have a fairly restful but fun filled summer together, preferably not involving chest drains if at all possible.

**edit** - so far, quiet week not proving to be, er, quiet...so look out for me on GMTV and channel 5 news tomorrow morning!

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...

Question: what happens when you get a group of people together who have been affected by transplantation or organ donation in some way?

Answer: This.


Yesterday at hideous-o-clock in the morning, we headed down to Birmingham to make the world’s biggest loveheart. Actually we are unsure as to whether this is officially the world’s biggest loveheart, but it did weigh in at a massive 70kg so we are fairly positive about this fact.

The day itself was absolutely fantastic. Being quiet and understated as always, we clearly wanted to attract as much attention as possible so decided to invite along a fire engine to grab people’s attention (just in case a metre wide loveheart wasn’t going to do the trick. The lovely guys at Blue Watch from Ladywood Fire Station in Birmingham happily obliged and stayed all day keeping both kids and over excited ladies amused. We also had 2 face painters from Sparkles face painting doing people’s faces for free, which I got completely over excited about and had some sparkly pink hearts adorning my face for the rest of the day. Of course amongst all the fun we had buckets full of information about organ donation and transplant, as all of us who had been touched by the issue and were happy to chat to people about it.

I love what I do so much, I get to meet the most incredible and inspirational people. One of our team members donated a kidney to her brother a couple of months ago, and I learned so much from her story. Another lady sadly lost her brother last summer, and her and her family decided to donate his organs. Listening to the other side of the fence is just so awe-inspiring; she is fantastically brave and wants to help us further in the future. We also had a kidney recipient, a lady awaiting a kidney, myself, and Oli who needs double lungs, as well as a scattering of people who were just kind enough to come along and help us out.

The loveheart itself was highly amusing to create and took a good few hours but it looked so fantastic we were all absolutely thrilled, as well as rather sticky from the icing, and somewhat shattered. As we sat in Starbucks drinking some much needed coffee after the clear-up, I thought about Oli and Robyn, both who I have chatted to this week, and both who are so very ill now. They desperately need this transplant; I can’t see much difference between their status’…statistically only one will get it in time. Discussing this with Emma bought tears to both our eyes – Oli and Robyn are such fantastic people, both deserve this opportunity, and we want them to get it so so much. I know I have said this already but PLEASE if you can do anything at all to help raise awareness this week, please do it. The hard cruel fact is without an increase in transplants soon we are going to lose one or both of these friends.

I have created an email which I am forwarding out to everyone I know, it is rather long and waffley but if you think copying and forwarding it on to your contacts might help, please feel free to do so:

Did you know that this Saturday (7th July) marks the beginning of National Transplant Week, run by the charity Transplants in Mind?

Here at Live Life Then Give Life, we are begging everyone to take the opportunity in the coming week to think and talk about the subject of organ donation. Be brave, broach the subject with friends or family, National Transplant Week is there for a reason, to raise awareness and save lives.


Want to help raise awareness but don't know how to start? Here are some ideas....
• Did you know you can sign up to the organ donor register online?
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp
Dont forget to tell your next of kin as they may try to override your consent.
• Tell 10. Forward this email on to 10 of your contacts, who knows how many of them might have been meaning to register for years, and this just spurs them on...
• UK Transplant offers a variety of awareness raising materials, absolutely FREE. For more info visit the following link: http://www.uktransplant.org.uk/ukt/campaigns/get_involved/promo_toolkit/promo_catalogue.jsp?id=5
• Ask your workplace if you can leave donorcards (see above kit) in the foyer.
• UK Transplant provides rolls of stickers. Get them to send you some (Free of charge) and every time you post a letter, stick one on...hey presto! A free, mobile, awareness raising advert!
• Pay a visit to your local chemist or GP surgery armed with posters from your free UK Transplant kit and ask them to display some.
• Check out http://www.transplantsinmind.org.uk/3/365/ for more details on National Transplant Week and how you can help.
• Take a look at our website (http://www.livelifethengivelife.co.uk) and copy and paste one of the real life stories into a bulletin to send to all your friends urging them to consider signing the organ donor register.
• And of course, there is always our T-shirts, available at http://www.livelifethengivelife.co.uk/buy.php all proceeds of which go to Transplants in Mind.


My life was saved by a stranger, perhaps someone who took or was inspired by one of these simple steps listed above. By helping us raise awareness, who knows whose life you might save....

Thank you.


I am going to leave you with a nice cheery slideshow of the day in Birmingham. We had such a fantastic time, as someone wise once said “it’s only work if you aren’t enjoying what you do”.

Today was the official launch of National Transplant Week, organised by the charity Transplants in Mind. It was held at the House of Lords and both Emma and myself attended. It was a wonderful afternoon, with some marvelous speakers, one of which was Robyn Tainty. Robyn is currently on the list for a double lung transplant and while she is a feisty little fighter, she is struggling a great deal now and clearly running short of time.

She had to pause to catch her breath and Emma had to take over during the speech. It really hit me hard, I did that same speech last year, that was me, sitting there, gasping for breath, desperate for a new lease of life, and it was very strange and very emotional watching someone else go through what I had done. I had to push back the tears a few times, which surprised me as I consider myself quite hardened to these things by now, but it just goes to show, no-one ever tells it as well as someone who is going through it.



There is hope for Robyn but time is of the essence. It was so hard to watch her do that speech, talking about the fact her chance may never come, watching her mum's face as she stood watching her daughter....I cannot believe that was me up there last year. I am just so incredibly lucky. And all I want is for her and Oli and all my other friends waiting to be as lucky as me.

On Saturday we are trekking up to Birmingham to build the world's biggest loveheart with the words GIVE LIFE emblazoned across it. This may or may not be a good idea, we shall see.




ps - watch Richard and Judy on monday. I have to say that or people lynch me afterwards.

Just a quick update as am reeeally tired, but I am home WOOHOO. A day earlier than I expected as they didn't do a biopsy (yay!)

I went in Monday eve after having a lovely meal out with A, and settled in very quickly (up on F East ward, where I had never been before as it is where the well people go, insert proudface here) and a couple of people came to visit me including one of my fave nurses and one of my transplant coordinators, so we sat and gossiped and giggled for a bit. Slept well, and was 2nd on the list this morning so was wheeled off into theatre waving merrily at anyone who would wave back. Whilst sitting in the anaesthetic room I confidently informed the anaesthetist that he would find it nigh on impossible to get me to sleep - an opinion which was proved somewhat wrong when I was out before the count of 10.

I came round fairly quickly in recovery, felt a tad sick at first but a quick dose of my fave anti-emetic soon sorted that out, and am now just left with a very sore throat and quite a groggy head (amusing seeing as I was asleep and now I just feel tired.) The doctor came round, squeezed my hand and reassured me that everything had gone fine and it all looked really good, then clearly noticed my dazed expression and said he would come back and talk to me later.

So the upshot is is that the bronch went excellently, the lungs look wonderful, there are no signs of rejection, infection, or over excited tissuescaringness. As for the wheeze....bit of a mystery really. Due to not knowing what is causing it we obviously don't know whether it will go away, but I am really not too concerned, all I needed to know is that it wasn't a sign of any greater problem.

Abby hugged me tonight, telling me that she quite enjoys me being her wheezy penguin which I thought was sweet, until she went on to say she will of course have to stick me on a shelf and ignore me as is the custom with wheezy penguins. Cheeky mare...

Thanks for the feedback and thoughts on my last post. Always interesting to read other people’s experiences and beliefs on the matter.

Last night I did another talk, I am doing quite a few now and trying to approach different groups in order to raise more awareness. This one was at a Bupa hospital, and was kindly set up by a friend of mine, who I met many years ago in hospital not through CF but through similarly dodgy lungs all the same.

The talk went really well. They were a lovely group, I was slightly more nervous than usual as these were health professionals so of course my marvellous “and then it went a bit deflatey and sat at the bottom of my chest cavity stubbornly” explanations wouldn’t really do. They had covered all the tables in pink paper (woo!) in my honour too. I did my usual blurb which is to run through my life really, throwing in facts about CF and about organ donation along the way. I love public speaking I really do, but I still haven’t quite become used to making people cry. It makes me feel sad watching them but I know that it means I am getting the severity of the situation across and also that luckily for me my “story so far” has a happy ending. A group of them are running the 10k soon to raise money for Foulis ward, which I spent many many months on as many pwcf do so click here to sponsor them.

I finally heard back from Harefield. I had a CT scan last week to investigate my Wheezy Penguin Syndrome. Essentially what they thought they would see (sciencey goggles on please) is evidence that at the join of the new lungs onto my windpipe, the scar tissue had got completely over excited and over accumulated causing a partial blockage of my airway which would make a wheezey sound like I currently have. Weirdly the CT scan showed no such behaviour, so now I am booked in for a bronchoscopy and possible biopsy to examine things further. I told my mother who put on a pouty face somewhat similar to mine and decided flatly that I could not be spared for a night or so. Good to see where I get my mature streak from then.

Am not too worried, apart from obviously the dreaded ‘R’ word which does crop up when pondering over what it could be. Still I have had a general anaesthetic more times than I have had hot dinners, and it will be kind of nice to be a patient at Harefield and actually be able to walk over to the canteen! Plus A is going to drive me up there on Monday night and we are going to go to a gorgeous little restaurant in the town that I have never been to. So anyway it won’t be a big deal, will let everyone know how it goes once I am back. At least I am only missing rain rain and more rain…

Every now and then, the subject crops up on the message boards about having another child with CF. Cystic Fibrosis is hereditary, and when both parents are carriers of the gene there is a one in four chance that their child will be born with CF. For the majority of parents, they have no idea that they are carriers so the birth of a child with CF comes as a total shock. But once you have one diagnosis, you are aware of the statistical implications of your next born, which brings up the terribly hard question: should you risk having another child with CF?

When I was born, there was no method of testing the foetus for CF. Now things are quite different; there are techniques such as PGD and CVS , which can offer further options and a possiblity to ensure the child does not have CF.

I used to think it was all very clear cut. Having a child knowingly with Cystic Fibrosis was wrong, I was sure on the matter. This was predominantly due to several factors, one of which was several devastatingly sad experiences of young siblings with CF that I knew through hospital. But then I began to grow up a bit, I met several very interesting people, developed close friendships with other pwcf, some who have or have had siblings who also had CF, and who had a completely different view of it all. It began to change my opinion, help me see that perhaps this issue wasn’t as clear cut as I thought.

The one opinion I stand by quite solidly is it does annoy me when prospective parents talk about whether they can cope with two children with CF. As far as I can see, that should not be the issue. Mind you this is not unique to children with CF; this is a frustrating discussion that many prospective parents might have. Yes it is all very well deciding that you can cope with a child and that you want one, but what about the child themselves? Surely the consideration should be whether it is the best thing for them?

I no longer think there is a right answer. Cystic Fibrosis is so unpredictable, you could have a firstborn extremely well child with CF then the next one could be terribly ill. Or vice versa. As for sibling relationships, I am extremely relieved neither of my sisters have to go through what I do, but I also know people who have had life-alteringly close bonds with their siblings and been able to help each other as they both share the same illness.

There is lots more I could say on the matter but I think I will leave it there, open ended. It’s an interesting topic, and I don’t envy the parents having to discuss it and consider all the options. Yes you can have a good life with CF, but it is no walk in the park, it can kill. And there are no guarantees. Mind you there aren’t in any walk of life are there…

Yesterday was my CT scan appointment at Harefield. Seeing as I am feeling so much more normal and now attempting to be a real adult, I decided I should drive myself there, after all it can’t be that hard…my sisters, knowing me far too well suggested perhaps they come along for the ride, and when I picked them up they were armed with directions and a rather large map, which is just as well because apart from “go on the M25” I didn’t really know where we were headed. I stick by the fact that I was in Harefield whilst they trekked up there continuously therefore it is reasonable that they know better than I do how to get there.

They brought some rather good CDs, with loads of songs that brought back memories of when I was younger bouncing up and down to them, and we sang all the way there. We arrived in plenty of time so went to the nearby pub; a place which became a second home to my family whilst I was in. If there was good news, they would go there to celebrate, if it was bad, they would go to drown their sorrows. Abby squeezed my arm gently as we stood at the bar, and said how strange it was to be standing in there with me, strange but in a good way. We sat at quite a significant table, as it was the one they had all gathered round in excitement the night I was called, but had also wept over on Black Thursday. This time it was just me and my sisters, sitting raising our glasses to the fact that for the first time, all three of us were there together.

We had a lovely lunch and then made our way up to the hospital. I was in nice and quick, and I recognized the radiographer so said hello and after peering at me for a second she confirmed delightedly that she had been on call the night I got my transplant, and oh my goodness I looked so well now! The scanner is a new one, funded recently by an appeal Harefield ran. For anyone that has never seen a CT scanner they are essentially like a giant donut, with a slidey bench which, er slides in through said donut (I bet that mental image is much clearer for you now isn’t it). It has a nice polite voice that says “and breathe in, and hold your breath” whilst some little lights flash and the bench moves slowly through the donut, then “you may breathe normally”. We go through that a couple of times, and that is pretty much all there is to it. As I lay there in between scans, counting the tiles on the ceiling, a man wandered in to pick up some equipment. He appologised for doing so and I said that was fine, so he started chatting whilst he was searching through boxes. He was from the surgery team and asked me if I had been to theatre. Stifling a smile I replied that yes I had been, just a few times (I went every other day for a few weeks for my suction pump) and that I had had my transplant in January. “Ah so you must be Emily! Nice to meet you!” Alarmed at my apparent infamousness, I replied likewise, and we chatted for another minute or two before he returned to theatre and I had the remainder of my scan.

All went smoothly and finished promptly, and I returned to the waiting room where my sisters were sitting browsing the various magazines spread across the table. The whole thing took about half an hour which didn’t really seem worth it for the hour and a half journey we had just made, but it is a very specialized test and hey anything that keeps an eye on these lungs and keeps them working beautifully is fine by me! I should find out the results next week. As we left Harefield, the heavens opened, so we decided to sing “I’m singing in the rain” at the tops of our voices all the way back to the car, and arrived suitably drenched. Thanks to my sisters, I had a really good afternoon. It’s amazing what you can make out of a rather mundane chore when you have the right people with you.

At the weekend, a large group of girlies joined me to celebrate my recent engagement. One of them did point out that traditionally the groom-to-be is invited to any such occasion but I was in need of girly drinks so this small detail was swiftly swept to one side.

The evening was superb. This was not however due to anything I did – in fact my organization skills failed dismally from the word go. The first bar I told everyone to go to was closed when I tried to book it. I then looked up a different one, but it had changed it’s name, and the woman on the other end of the phone had a very heavy accent and after asking her three times for the name I was too embarrassed to ask again. On further investigation, I found a Spanishy sounding bar and decided triumphantly that this must be the one. We turned up there to find the man had no recollection of our booking. I was annoyed at this, as the lady on the phone had said the manager would phone me back to confirm and no one ever had. I pointed this out and firmly insisted that this must be there mistake. Credit to them they immediately set about creating a block of tables for our giggling girly party. It was only when he was putting the finishing touches to it that it dawned on me that we may or may not be in the wrong bar. By that time he had worked so hard to accommodate us I felt too guilty to leave, so we stayed, enjoying a fab evening of pina colada’s, sangria and tapas. Luckily the girls know me well enough to just laugh at me (and one even kindly reminded me to get someone else to organize my hen night).

Sitting there, surrounded by my friends, I just felt so incredibly happy and so so lucky. I haven’t been able to do the whole “bar” thing for years, well in fact I have hardly been able to do it at all, as the smoke has always been too hard to tolerate (come on July 1st) and by the time I was at Uni my lungs really were not complying with my need to go out and party. Honestly this year is a bit of a dream come true so far. Well minus the whole nearly dying bit right at the beginning.

A small group of us returned to mine for coffee and further laughter, and poor A arrived home to find a group of shrieking girls drinking coffee and clutching various wedding magazines. Credit to him, he merely offered to make more drinks and sat down quietly. Although if you ask me he wasn’t actually too fussed to come home to be greeted by a room full of rather lovely women…

I have heard from Harefield now and due to wheezing becoming slightly excessive now creating an eerie whistling affect, I am booked in for further investigations on Friday. My sister who has just finished Uni has volunteered to accompany me so I am sure we will have quite a nice day; there are some great pubs up there so a good lunch at least!

Work-wise we are still ploughing on with preparations to support National Transplant Week. We have a bit of a project currently being planned, which I will disclose as soon as it is all a bit more concrete. I am also currently helping these guys here; about time I gave something back to the NHS so I am more than happy to be involved. Yay for life!

ps - I was going to add please spare a thought for Emmie, who is having great problems with her port. However I have since been informed that due to its continuing disobedience and naughty behaviour, she has now named it Emily and consequently the whole team have taken great delight in referring to it as "Naughty Emily". I no longer feel she needs any pity...

Very sadly, my friend who I spoke about in the previous post past away. My thoughts are with her family and friends and she will be greatly missed. It is sadly another huge reminder of how much work and awareness raising there is to be done.

Onto brighter things, I had the most fantastic day today! It was my mother’s school summer fete and I went along because not only have they been amazing and supportive of my mum since she started there, but they are kindly giving all the money from the Raffle to the CF Trust. Laurence Dellaglio opened the fete, I got to chat to him a bit, he was very friendly and posed for a pic and said he was in awe of what I had gone through.



I accompanied my mother as she set to work on one of the stalls, and I enjoyed it so much I took over her shift and stayed there. People kept worrying if I was ok or if I was wearing myself out but I just love to have something to do and be busy, and I think because I am so used to doing things running on empty I now feel a bit like superman (oh dear the superman complex that Harefield have warned against). It was lovely to chat to all the children, and the parents who have been so sweet and bought me presents after my transplant despite never having met me. The committee had all purchased LLTGL T-shirts and so there was quite a few of us sporting them dotted around the fete. The weather couldn’t make up its mind and kept thundering intermittently but it didn’t spoil the atmosphere at all.

Then as a massive favour to us, Richard turned up to draw the raffle and thank everyone for their support. It was the first ever time he has seen me without oxygen. I turned round to see him, ran at him and he threw his arms around me, lifting me up as he did so, exclaiming “did you just run?!”. I don’t think he could believe it is such a transformation. I chattered away (hard to believe I know) till he had to go but not before taking a video of me on his phone for Judy who he said wouldn’t otherwise believe it when he told her! I jumped up and down whilst he was filming just to demonstrate what a complete transformation it really is. It looks like I might be on their show again in the next month or so, so watch this space…




So yet again today I was surrounded by amazing giving people who just want to help and want to support me and my causes…people in this world are really pretty great when you look closely.

I know this is the second blog today but I just had a really great evening and wanted to share it. Also goes to show that life is made up of ups and downs, variety is the spice of life and all that. Anyway, one of the things I am most grateful to my parents for (I am grateful for a lot of things) is their peculiar habit of saving scraps of paper, letters, bits of work, drawings etc from throughout our childhood and filing them away in a huge metal cabinet. On Tuesday evening my sister and I dug out several of these files (for research purposes, I may or may not be writing...) and the results were hysterical.

All my school reports are in there, dating back from my very first primary school assessment. Weirdly, and for reasons I clearly cannot fathom, sentences such as “Emily sometimes talks too much” crop up rather frequently and throughout all my scholastic years. One of my favourite comments is actually on my year 7 report (I was 12 at the time) which says rather succinctly “Emily can sometimes try to take charge of a situation even when it is inappropriate for her to do so.” Slander, I am telling you.

In my middle school, there was a small box on the back where the pupil was encouraged to write a short self assessment of their academic progress so far. I appear not to have got the hang of that as aged 10 my progress report reads “I am kind (mostly!) and quite pretty”. Obviously no self esteem issues there then.

In all seriousness though going back through these files is a much treasured trip down memory lane, frequented with cries of “oh I had forgotten that” and “oh my goodness how old was I there!?” etc. I would strongly urge any parents out there to create these little folders (or memory boxes as I know some call them) as they are truly invaluable to go back through years later. This file also holds the answer as to how happy I was as a child, with the following sentence on yet another school report. “I am a friendly person and I have a happy life. I want to go on doing my best at everything.” Clearly my parents did something right then.

It seems to be another quite tough week for the CF community. I follow the blog of a girl in America who received a double lung transplant, rejected, then went onto receive a single lung transplant, then sadly rejected again. She died a few days ago, and messages of condolence have been pouring onto her site. She was incredibly brave and would talk candidly and openly about death and her feelings towards it. Reading other people’s experiences is helpful and useful as it allows you to feel you are not the only one going through these things. It also makes your experiences seem more normal and less frightening when you hear other people have been through the same and made it out the other side. However the bitter side of that is you watch people in a similar situation to yourself not do so well, and sometimes sadly die. It’s frightening yes, but I am sure it is frightening when anything that focuses your attention on your own mortality happens.

I received an email from a friend of mine today who has been waiting for transplant for some time. She informed me in a calm and dignified manner that she is now too ill to undergo the operation so is making the most of the time she has left.

It makes me sad and it makes me angry. It shouldn’t be this way. Even worse the friend in question had several false alarms, none of which ever came to anything. Thanks to the CF Trust and our Laughter for Life! gig, a new donor coordinator is being employed by Harefield to try and cut down on the number of false alarms caused by non viable organs. But why is this being self funded? And why is it not nationwide? As far as I am aware, in America they have these coordinators in all hospitals with ICUs, and when this was introduced the number of transplants went up threefold. I just feel disappointed for her and her family that this chance has been missed. She is as I said extremely level headed and I am sure she would not want any pity. Instead she is focusing on putting as much quality as possible into the time she has left.

Things with me are absolutely fine, I am happy and content and living a fantastic life. All this is only thanks to the gift of a stranger. It’s just another reminder to me really that I am just so incredibly lucky. Just because it happened for me does not change the fact that for 50% people waiting for double lung transplants it will never happen. National Transplant Week is coming up soon, hopefully there will be lots of media attention on the issue around that time. What about your work place? Could you do anything? Perhaps order a free box of UK Transplant stuff and have it in the foyer of your offices or something? Have a think…

(my that's a lot of weblinks. Check out who thinks she has mastered it)

Yesterday was Ashtead Village day, where we had (very kindly) been given a pitch for free. I gathered together a team of helpers (bless their cotton socks) and the four of us set off for a 9.30 start. As well as a ton of info on organ donation and on CF, we had a few little elements to try and entice people over, such as a raffle, a win the teddy competition and mints (which sounds weird but really worked!) We had a constant flow of people around the table, some just taking donor cards, some stopping to chat, some with their own stories, others just wanting to hear ours.

The two most common myths which cropped up time and time again were:

“I’m too old”. This is nearly always incorrect. The oldest donor so far was 82. There is no age limit, instead they look at quality of the organs.

“I can’t donate I have asthma/diabetes/MS etc.” Again, incorrect, and frustratingly according to several of them their doctors had told them they could not be donors because of it. Whilst these illnesses could obviously affect organ donation, the only two illnesses which categorically rule it out are CJD and HIV.

Another very common phrase we heard all day was “oh I have been wanting to get one of these [a donor card] but can never find one.” This is almost certainly true, and it bugs me. Why is it so hard to find a donor card? And it really is. I don’t know of many shops that have them by the checkout, nor many doctors surgeries which is more worrying. Boots advantage card has a section where you can indicate that you are an organ donor which is great. The new driving licenses obviously, but there doesn’t seem to be a clear indicator on that (I think it is some number in a category or something).

I know the most important thing is for people to join the organ donor register, but I feel that for people themselves and their families, they want something tangible, something that verifies it for them. We had leaflets where you could just send the slip in to join the register, but many people requested “the one with the card on it”. In 1998 the BMJ published this article which talks about the idea of the donor card symbol being on a credit card. After all who doesn’t have a credit card? I have often talked about all store cards following Boots’ example because I don’t think I know of anyone who doesn’t have at least one store card, surely they could all offer the option “do you want to be an organ donor?” on the form you have to fill out?

Anyway grievances with national attempts at awareness aside, the only way forward it to talk to people about it and help them make an informed decision. We left Ashtead with 48 filled in forms to post, and loads more people took them away for themselves and for friends and family. We had a really lovely day, I had no voice at all by the end of it – had been putting my new lungs to good use by shouting about it to get attention! Hope everyone had a lovely weekend in this absolutely gorgeous weather!

Today was an exciting day, for two reasons. First reason is, I went on a train. Again, sounding rather mundane there, but I haven’t been on a train in over 3 years. As my CF progressed and I got more and more breathless, climbing stairs and changing platforms became too exhausting, and once I was on oxygen it became nigh on impossible. But today, I took that next step towards being a bit more adult and restating my independence and got myself to Victoria (I didn’t want to go on the underground, worried about infection risks). I arrived in plenty of time (fear of being late) and wandered over to the ticket booth. As I was buying my ticket, I was thinking “I have two new lungs inside me and you don’t even know” which was highly self involved – I mean the man who was serving me could have had any number of things happen in his life that passengers wouldn’t be aware of…we never know what journey the person next to us might have had.

Taking my seat next to the window, I tried hard not to stare at other people, yet was fascinated, taking in all the little human details. I don’t think you very often get that close to strangers and become that close a witness to their little idiosyncrasies. An old couple, sitting side by side, bickering gently on which line they need to take. A harassed looking mother with two young children, who were taking it in turns to repeatedly ask where they were going and clearly not believing the mothers tired repetitive response. A young trendy girl, earrings and bracelets jangling, playing a game on her phone, a business man, chatting on the phone with one eye browsing the paper on his lap.

On arrival at Victoria, I was slightly overwhelmed by the huge bustling rushing atmosphere. Clealry I have been moving slightly in slow motion still (not hard when you live in a little town) and everyone there seemed to be on fastforward. I was early so browsed Monsoon for a bit (such a bad idea, nearly spent my taxi money on new shoes that I really don’t need but managed to resist) and then wandered over to the taxi rank. Sitting in the Taxi, I was desperate to blurt out “I got on a train and came into London all by myself!” but thought that was a)rather childish and b)may make him think I was weird. The journey was much shorter than I anticipated and suddenly I was there, staring at the doormen in their long coats and top hats, feeling distinctly out of place.

I tried to look assertive and confident and went to the desk to ask where I could wait. They showed me into a seated area with huge armchairs that a duke or duchess would be proud to own. There was a towering vase behind me with the biggest bunch (it can’t really be called a bunch) of flowers cascading out of it; I considered taking a photo but decided against it as I would look a tad touristy.

The meeting itself was with the Simone Cowland Trust, who are holding a charity ball to raise money for Foulis ward (the CF ward I have been treated on for most of my adult life, and that I lived on for much of the last year or so prior to transplant.) Last year they had Martine McCutcheon host their ball…this year they have asked Emmie and I. We are totally overwhelmed and deeply honoured, and are hoping that we will do them proud and help them raise loads of money to support adults with CF who can end up spending so much time staring at those four walls.

I headed home after the meeting feeling sky high, motivated and determined. I am hosting a stall at a village fete this Saturday where we will hopefully get some people signed up to the ODR, and raise a bit of awareness about our campaign and CF along the way. We can’t mend all the problems in the world, but we can do our bit to change it…

It may or may not have been highlighted that I failed to say where I went today. It was the Dorchester. Minor detail clearly.

We have been keeping busy campaign wise. Organ donation has cropped up in the news twice this week, once re the rather scary sounding “Big Donor Show" and then on Wednesday when it was revealed the EU are thinking of launching their own donor card to try and combat the huge donor shortage. I became rather narked with the BBC at this point because not only had the previous days article not mentioned anything about how to register as a donor, but then the latter article, which actually talked about the dire shortage of donors, also had no sign up details whatsoever! After a phone call to complain and the magic charms of a journalist friend of mine, a UK Transplant link was added. A small victory perhaps, but it just seems such a logical place to put one!

Yesterday was my regular trip to Harefield. It was strange for several reasons, firstly my mother insisted I drive (and then took me a ridiculous “scenic” route which means I didn’t actually learn where I was going at all) and secondly because I hadn’t been for 5 weeks, so it felt rather strange. We arrived in good time and set about the routine tests, bloods, X-ray and lung function. We had a lovely lunch together in the pub down the road (which I walked to, yay!) at my mother’s request, as she and my family had spent many a time down there either toasting to a bit of good news, or drowning their sorrows at potential devastation.

Whilst there we phoned Lisa on the internal phone, who is still doing very well but is struggling. It sounded so similar to the feelings of confusion doubt and sadness that I had so I told her I have every faith and confidence that she is going to do this, it brought back not very pleasant memories but at least I was able to say I have been where she was so hopefully I know where she is headed.

My appointment itself went fine, I mentioned my wheeze, which has been growing more and more audible, so much so that other people have started commenting on it and Abby has dubbed me “the wheezy penguin” out of Toy Story. After some examination, the doctor decided it is probably (here is where my vast lack of scientific knowledge and understanding lets me down) some…thing where the scar tissue from the join (where they connected the new lungs to the windpipe) gets a bit over zealous and over tissues, creating a narrowing of the airway. There are 2 ways to solve this, depending on the type of narrowing it has caused, and both require bronchoscopies (camera down into the lungs) therefore will require admission. Apparently he is going to confirm the diagnosis with a rather clever thingamajig (didn’t know this was actually a word until spell check corrected my attempt) which creates a sort of 3D picture of the lungs using cross sections of my CT scan. I may be making this up a bit, don’t quote me on it. Still he didn’t seemed to worried about it and if the only problem is over enthusiastic scarring rather than rejection that is fine with me!

Today was a wonderful day (to be honest what day isn’t at the moment). In the morning I had a photo shoot which is predominantly to be used for my mum’s school, who are fundraising for Harefield and the CF Trust all this year. Being the shy and retiring wallflower I am I thoroughly enjoyed the experience, especially as I got to wear my gorgeous long floaty skirt that only comes out on special occasions, and run through a field barefoot (in fact I enjoyed that bit so much I requested to do it again. And again.) After lunch, my mother and I headed up to the Brompton. I had been dying to go and visit the staff who looked after me for so many years and seeing as my mother is on half term we thought we would take the opportunity. As the lifts opened on the 2nd floor I caught sight of one of the physios who had helped me train for last years hydro active. She shrieked and I ran and threw myself at her, hugging her and laughing (it was either that or cry). My CF nurse was there too, someone who has helped me through the years and who last Summer had to give me my end of life talk, and was now gobsmacked standing their chatting to me, well listening to me as I hardly let them get a word in edgeways.

As we moved through the hospital we found my other favourite physio, who again has endured countless hours of listening to me, comforting me, and most importantly, helping me breathe. We went up to the wards where there was more cries of “oh my god!!” more shocked faces, more smiles and more tears. We then headed over to the High Dependency Unit, where I was for so long 2 years ago, and were reunited with the staff there. The head sister took me downstairs, through some long winding corridors, to see the surgeon who had saved my life twice over doing complex bullectomies and adhesion my lungs to the chest wall to try and stop them collapsing. It was so wonderful to get to see these people when I am not a)terrified b)struggling for breath and c)desperately ill.

I did my calculations this evening when I got home. I estimate that I owe at least 17 people from that hospital my life. Now bearing in mind, those 17 are people I can think of who I am pretty sure I would have died without their direct intervention. As for the number of people that got me through psychologically and physically to keep me fit enough for transplant, it is a huge number, far greater than I dare estimate. It is funny to sit and contemplate just how many people have got me here, if I tried to calculate the total medical care and intervention at pivotal times of desperate need, I suspect I would be nearing 100. There is an advert I have seen for the NHS in which a patient talks about the number of people it took to put them back together again. These people are amazing. I know it is a job, they are paid (generally not enough) and that that is their responsibility but I have found that 9 times out of 10 they go beyond the call of duty, which is why I considered today’s visit to be to see old friends rather than just a courtesy call. Ending with something I say an awful lot; I am a very lucky girl.

I was browsing through some forums earlier which I found as they link our Live Life Then Give Life webpage. One thread was talking about a post we issued about a little girl called Angel, who’s in desperate need of a liver transplant. Several comments surprised me greatly. The general gist of them was “yes that is all very sad but what is the point of this post? What can we do about it?”

This surprised me because it goes against my natural way of thinking. Now I am not boasting, I wish this was a grand self taught ability due to my profound knowledge that this is the right way to be, but actually it is just because it comes as an instinct to me and I can’t help it. When I come up against an impediment, my first thought is what can be done to tackle it. It just never seems to occur to me that there can’t be anything done. I suppose this is a weakness as much as a strength, as it does unfortunately mean I throw myself at sometimes the most insurmountable of obstacles.

I know I am not the only one who thinks like this, there must be hundreds and thousands of people out there of a similar mindset. Is it natural, or have we taught ourselves to try and think like that? That is another discussion entirely. Yes my way of thinking can be tiring. It requires energy and proactiveness both of which take up a lot of time. It also does not always end in success. But the way I see it, if we all sat there and went “well I can’t do anything about it” then the world would just crumble. Medicines would never be discovered, new places never conquered, technology never advanced, the list goes on.

I cannot change the world. No one can, but the tiniest of gestures can make a difference. A smile and a cup of tea with a friend, a card to someone who is ill letting them know you are thinking about them, all these change things for people. And surely it is the minutes in someone’s day that make up someone’s life? Therefore surely you are changing their life in your own tiny way?

I don’t believe in fate. Well actually, I do a bit, but I believe that we are all responsible for our own lives. I had to read a philosopher called Satre as part of my French degree, I think his essay “l’existentialisme est un humanisme” made quite a lot of sense. If you want to do something, you need to get up and do it. Or at least try to do it, not just sit there contemplating whether it is actually all worth it and what if I don’t do it maybe someone else will.

My friend Emmie, who often comes out with more intelligent things than me, gave me a quote from Ghandi which seems to sum up what I am trying to say; “be the change that you want to see in the world”.

Anyway I figure even if I am wrong…at least I tried.

I jumped in the car earlier, to pick up my sisters, who had spent the afternoon being posh ladies who dine out in London. I approached the station and could see them chatting and waving excitedly. The journey home was filled with tales from the day, and they had bought me the most awesome box of marzipan fruits (I swear these things actually look like fruits and veg, and they are strange ones, Melon, Corn etc..!) from Harrods, and had generally had a wonderful time. I dropped them off at home, still glowing, and drove off towards my house.

As I turned onto the main road I started to cry. Cry with happiness. I sobbed thank you, I don't know where to or why, but just overwhelming gratitude to my donor and their family. Without them I would be dead by now, and instead I am driving round, picking up my sisters, going out with friends for the day tomorrow and generally living my life. My family are no longer chained to staying within a phonecalls reach of me, should I need anything or should Harefield call. They have also got their lives back, and this evening was a beautiful demonstration to me of how things have changed.

I still can't believe my luck, I still can't believe it has happened, but my god am I going to make this count.

Verrrrrry short post on here as I have just waffled on for britain in 2 posts on my hydroactive blog

Have had a fab few days, extremely busy still but I still can't get over how much I can do! My favourite thing this week was my walk with my mother down to our local park, and around "the heron pond" so called due to it's stately looking inhabitant who sits on the little island in the centre of the pond, regarding everyone with slight distaste.

It was gorgeous and sunny, and we set off at a good pace, chatting along the way. As we walked back I couldn't believe how small the hill (which was it turns out a gentle slope) now seemed. I remember struggling up that hill at a young age (my mother confirmed this stating that her comment was usually "you insisted on bringing the dolly and the pram, you can push it home") and then in the last few years have only ever been pushed up there myself in the wheelchair.

Excitingly I wasn't as tired as I thought I would be, although I did sleep for 14 hours so perhaps I was rather tired just not in the chronic worn out fatigue way I keep being nervous will return.

Anyway since I said I wasn't going to waffle on this blog I should shut up now.

Huge moment yesterday – I went swimming. OK that may not sound like a huge moment, but I haven’t been swimming for well over two years, possibly closer to three. Even in the run up to me using oxygen 24/7 the sheer effort involved in the whole procedure, walking there, stairs (of which there are often many) getting changed, actually swimming, getting showered and dry (huge issue when constantly breathless) and getting changed again seemed far to huge an obstacle to overcome. Since my transplant I have been building up strength and waiting for the time that the risk (and there is always a risk as I am immunosuppressed) of picking up bugs is at its smallest.

So yesterday, after a significant amount of nagging from my mother who was not moved by me pointing to my diaphragm and reminding her it was paralysed, we drove to our local gym and pool to sign me up – a years membership being a birthday gift from my lovely grandparents. As we pulled up to the centre, I had butterflies in my tummy. It really shouldn’t have been a big deal at all but to me it was another landmark, another sign of returning to a life that somewhat resembles normal. We walked up the stairs, leaving Abby to study in the café but be able to wave at me through the window, and my mother and I disappeared into the changing rooms.

As I child, I used to accompany my mother on her ticket, and so spent many happy hours there splashing around and racing my parents or my sisters up and down the pool. I have always been a bit of a water baby, and used to swim regularly once a week for as long as I can remember; something which I attribute the strength of my old lungs to, and one of the key reasons they managed to keep on working right to the end. Apparently on one holiday very early on, we arrived at the poolside and with a squeal of delight I hurtled myself into it, completely oblivious of the fact that a) I required armbands to stay afloat and b) this was the deep end of a rather large pool therefore had to be promptly rescued.

Anyway back to yesterday. We walked down the corridor and onto the poolside. It was fairly quiet, with only one or two members dotted around, casually making their way up and down the length of the pool or sitting relaxing in the Jacuzzi. I suggested to my mother that I sit and watch her first, which did not go down as well as I would have hoped. So instead I was swiftly cajoled into walking down the steps into the pool, where my mother took off and swam rapidly to the other side. I stood there, with water up to my knees, and looked down at the pool. I am not scared of water, never have been (as my childhood kamikaze attempt demonstrates) but somehow I couldn’t quite bring myself to launch in with carefree abandonment. I slowly edged myself in, bit by bit, the feeling of being immersed in water was strange and took me back to being on holiday in Greece where I would spend hours just floating or swimming in the sea.



I finally decided that feeling though I was as if I was about to launch myself out of an airplane, this was a tad melodramatic and grabbing hold of the edge, I pulled myself into the pool so I was completely immersed. Swimming is like riding a bike, once learned never forgotten, and I quickly found my water wings again. Being in the water was just such a liberating feeling, and in a completely over exited way I challenged my mother to a race (which I won incidentally) suitably knackering myself out by the time I got to the far side. We swam about a bit more until I got a stitch and decided to call it a day, sitting myself on the side of the pool dangling my legs in the water.




The whole experience was just so strange, it was something that took me back to my childhood, to a time where I had little concept of what being really ill was, and then represented something I thought I might never be able to do again. Needless to say, I arrived home exhausted but beaming, and I am looking forward to going again, and this time braving it to the gym (where I really need to start my training schedule to try and work up to this 5k in September!) Freedom. Freedom to walk, to climb, to swim, to talk…to breathe.