The quickest of quick updates as I am soooo tired but firstly and most importantly I had the best day ever today as I MADE IT to the wedding! YAAAAAAAAAAAAY! And here is a picture of me and the beautiful radiant bride as proof.
It was a gorgeous ceremony, and Mrs W, I wish you every future happiness as you so deserve it my special friend.

Sorry for the lack of updates but I have been back on HDU but this was predominantly a safety precaution. The last couple of days have been a tad draining (worst pun in the history of mankind I do apologise) but the short version is, I had my 4th pneumo which this time was at the front of the lung. Having realised the drain (at the back of the lung) was not only failing miserably at doing its job (not really its fault as it wasn’t in the right place) but was also wedged precariously right near a large vessel (a bit more its fault) they decided the clear and obvious answer to all my lung collapsing problems would be to have no drain at all. Weirdly I could not quite see this and so in a mature and calm manner I explained my concerns to the surgeon. Or I may have sobbed pathetically “go away you aren’t taking it out” at him, but that’s a minor detail. Quite a few hours of arguing and a LOT of discussion later (where they did in fact explain more fully that this was the only option as you cant put a drain in when the lung is technically up, we would have to wait for it to fall down again to put another one in anyway) as a compromise for my state of mind, we agreed to clamp the drain for 24 hours as if it all went wrong at least all they had to do was unclamp. It made me feel better anyway.

24 hours later with one lung hanging on with grim determination, out came the drain. It was then a question of wait and see, and happily, my lung behaved in an impeccable manner, so when the surgeon came in at 10am this morning to review my Xray (taken an hour previously) she confirmed that she felt it was safe for me to go. Hair, makeup and wardrobe arrived (aka my mum and sister) and then armed with a letter, which dictated exactly where my pneumo is situated and basically instructs any paramedic exactly what to do, I set out on my first proper trip away from the hospital. Yes it was scary but it was worth it a million times over and I wouldn’t have missed it for the world.

Why do I ever bother writing “just a quick update” when anyone who knows me knows that will blatantly prove to be untrue!

Having had a lovely quiet weekend, where my lungs were well behaved, and more surprisingly perhaps so was I, I woke up this morning looking forward to gearing up for a week of improvements. I felt a little tight chested so after struggling to move around perched precariously on the arm of a chair (where else when you are surrounded by beds chairs and pillows) to do a nebuliser. As I was doing so I cleared my throat and felt a ping and that same old flood of pain and pressure. Instinct took over, as did fear of a repeat of two weeks ago, and I ran and pulled the emergency chord and then out into the corridor (although not very far as O2 tubing causes comical dog on leash movement at all times). Credit to them every single doctor and nurse came flying. I was struggling quite a bit by this point but was aware that it wasn’t getting any worse, so immediately started apologising to everyone (in between trying to breathe) for pulling the emergency chord which is really a cardiac arrest button and clearly my heart was still beating as I could feel it reverberating all the way from my eardrums to my toes.

So here’s where we stand now. It was another collapse, as I felt the “ping” so that brings me to a grand total of 4 pneumos in just over 2 weeks. Now the good news is, this was unbelievably painful. I know that may not at first sound like good news, but the reason it was so painful is because the air was pushing on the lung trying to force it to collapse, but instead of collapsing with good grace, it is sticking nicely to the lining therefore refused to budge very far at all. That conflict of interest is what caused the pain, so is an excellent sign as we want that lung to stick to prevent huge great ER type dramas as exhibited previously.

The somewhat more disheartening news is that this is a step in the wrong direction. I was put back on suction straight away, will remain so at present, and so am back to being tied to the bed. This was also a major blow to my morale, as it puts an immediate halt on leaving the hospital (at all) until this is resolved, as it is just not safe. I would be lying if I said I have managed to be positive all day.

I had a CT scan, which revealed a large patch of air in front of the lung. The drain is sitting nicely in its own little spot behind the lung. This means it is not being particularly efficient at clearing said new airspace, and so we will be in talks tomorrow with the surgeons about putting in a new drain. This new drain experience will be bittersweet, good because it will be under controlled conditions not a hasty life-saving manoeuvre, but because I am stable, I will be far more aware of it, and it isn’t the most pleasant of things. But still, surely better to have unpleasantness than to be critical, so stop your whinging Em. Plus Lu is staying the night tonight, and we have had a muchos fun night, who says hospitals are no place to have a sleepover!

Ironically, the thing that has cheered me up most and kicked me back into fighting spirit is the following episode. Things have been very stable this evening but obviously the doctors have hammered home to me the importance of reporting any change, even if I think I am being silly. I was sitting up and began to notice a slight pain as I breathed in, and a small but pretty insignificant increase in pressure. Remembering to be adult and forward thinking, I bleeped the nurse, and reported this, congratulating myself in my professional and cautious manner on doing so. About 20 mins later, feeling was still there, so I decided to move off the bed to see if a change of position altered it. In order to do so I leant over to move my bedside table, only to discover I may or may not have positioned it directly onto my suction tube. Since removing large and heavy object from delicate tubing I have noticed a significant improvement, so whilst I am not a doctor, my medical instinct tells me this could perhaps have caused that change in pressure. Who can be sure…

Tonight, exactly two weeks after I was fighting for my life in intensive care, I got dressed in something other than pink PJs, and left the hospital for the first time. We wheeled me down the road, to a gorgeous little Italian restaurant which I have had many a happy meal in, and was my first outing after last years big collapse as well. As we sat down and raised our glasses, I felt very strange indeed. A huge mixture of relief, tears, excitement and fear, of what has happened¸ what could have happened, where I was, where I am now, and of what is still to come.

I have been terribly over excited about this outing and gearing up to it all week, and it really was a perfect evening. My pain was well controlled, and my appetite managed to kick in (funny how that happens when I spot lobster on the menu…) and so brave little me admirably managed three courses (poor father is now probably examining his wallet in a wistful manner wondering quite where my three mouthfuls of everything appetite had gone to!). We had the most gorgeous meal, and it was just so so lovely to be sitting there with my wonderful family. Who are stronger than Mr Strong from Strongland as my mother would say.

I knew I would find it hard afterwards, and I have done since being back. I think it is the build up and adrenalin, and of course that slight bit of reintegration into the real world and normality is a reminder of what I have been away from and what I nearly lost. So essentially I am now in a profound but content mood, and decided to blog instead of sitting staring at the wall, which whilst it is a lovely baby blue colour and does have a row of chippings on it which resemble an alligator if I tip my head to one side and squint a lot¸ isn’t the most stimulating of things to be concentrating on!

A number of people have mentioned to me how they find reading my blog a strange experience, as I have a tendency to write about sometimes quite horrific and/or sad things but then will drop in a touch of humour. This has never really struck me as weird before, but on thinking about it I think we (society) often feel that things are either bad therefore sad, or good therefore happy etc. I was talking about this with Abby the other night – I cannot think of a single time in life when you will get a simple stream of matching emotions. For example, at the most joyous of occasions, such as a wedding (not that I have weddings on the brain due to a dear friend of mine getting married in a weeks time!) there will be moments of tears, and touches of sadness amongst all elation and celebration. At a funeral, there will be a moment of laughter as someone recalls a funny memory or story, perhaps shared through tears of heartache.

Life is varied and complex, and for me that brings part of its great beauty. You can be crying with laughter one minute, and laughing through your tears the next, but I think what is important is allowing that and accepting that as part of life. Also viewing it in this way makes it harder for life to knock you down, when you see it as a collection of tiny fragments rather than one great solid slab, so even with huge black clouds everywhere a sliver of sunshine is bound to creep in somewhere. I try to think like that as it makes it easier to face the whole torrent of emotions which sometimes flood at me on an evening such as this, as it seems more natural that whilst I am elated and content to be at this stage compared to a week ago, I also feel a small ache of sadness at what the events represent as far as my health is concerned. Time is running out. And I have said it many times for the sake of media interviews and awareness raising, but of course sadly it isn’t just for effect, it is true. But I have every single chance of being called tonight as I did last night and the night before¸ and will look forward, take one day at a time, and keep concentrating on small goals, such as getting myself better and of course getting across that finish line!

All we can ever do surely is to keep on keep on, and live it and love it to the best of our ability? Oh and please don’t feel bad if you find yourself laughing at something I have written, unless it is at my spelling and/or grammar in which case feel very bad indeed as that is wrong and not at all funny and you should berate yourself entirely.

Click here to see my first outing! Click here to see a photo of the best family in the history of the entire world.

Just a quick update; morning started very well with me managing to eat my entire cooked breakfast (I love the fact that is a good thing) and a nice long walk with the physio being my longest yet and at the fastest pace so far. Shortly after this, I began to get a bit of chest pain and pressure build up and noticed the drain was no longer hissing. Minor panic on my side, and the doctors were nice and calm, came and fiddled about with the drain which obediently started bubbling again. I got a chest Xray which showed that the lung was still fine, however they agreed that it did deflate again a bit when the drain became slightly obstructed as it is still in the position it was originally placed in when the lung was down, therefore now the lung is pretty well up it will bump into it and block it off every now and then (ooh I am so scientific me). I consoled myself by consuming hot chocolate and Christmas cake which had instant and magical cheering up effect (I am my mothers daughter), whilst they went off to have a chat about whether something should be done.

They decided to do a bit of wiggling (of the drain, not of themselves although that would have been more fun for everyone involved) and it all went swimmingly so drain is now slightly adjusted and hissing merrily and I am a tad sore but fine. The best thing I can take from teenytiny collapse is that it was teenytiny, i.e the lung did not throw its hands up in horror at having its drainage site blocked and collapse dramatically on the spot like previous diva behaviour. So it is obviously deciding to stick and play along nicely, yay go lung!

Greetings from the wonderful world that is the CF ward, YAY!! I was transferred back over here yesterday, which is fantastic news. I was absolutely fine on the surgical ward, the staff are lovely and attentive and I was very comfortable, but the fact they felt I was ready to come back over, away from the building with the ICU in it shows that I am definitely making progress.

Whilst I remember, I must just clarify for people’s peace of mind that I am on the active transplant list at the moment. I was briefly taken off when I was too ill to undergo transplant, but am reinstated firmly on and have been for about a week now, so please don’t worry about that those of you who were.

After a complete whirlwind, things are slowly settling into a pattern, which considering it is a fairly stable one (touches all wood in the vicinity and more) is something of a relief to everyone. Obviously as things have improved physically it has hit me more and more mentally what I have just been through, but the only thing you should ever hang on to and savour from experiences like these is that ok yes I went through it but look I am still here, and that just reaffirms how tough my body is. I have been speaking loads to my family too, to fill in the gaps on the first few days which quite frankly were more unrealistic than neighbours in their drama filled capacity. Apparently there were nice glimpses of the real me even at the worst possible moments, when I would do or say something bossy/naughty/cheeky, which was reassuring to everyone. When they leaned over the bed and gently told me they were taking me briefly off suction to move me to a different room I removed my mask and firmly stated “you are NOT”. What a wonderful and cooperative patient I am.

According to Abby I also spent the afternoon in Epsom hospital smiling away confidently with my eyes closed saying “I’m fine now it’s all fine” caked in blood with chest drains and tubes everywhere yet due to the powers of morphine under the false impression I was convincing my friends and family who, credit to them, played along with good grace. They always do this bless them, as I tend to get a tad cross and irrational at monstrosities such as the straw being angled at a slightly awkward degree and therefore berate my mother with intense sulky facial expressions at which she hurriedly apologises over and over again. At least I wasn’t as rude this year as I was last year, when I had the ventilator in and was trying to spell out messages by drawing on my leg, and in my frustration at my mother not being able to comprehend the vague swirley motions wrote “and you call yourself a teacher”. How I earned the nickname “Angel” is quite beyond me, I believe I may have given it to myself at some point and then carried everyone else along in a wave of enthusiasm that perhaps I am some kind of angelic creature. Luckily only my family know better!

You can probably tell by the complete lack of direction in this blog that I am still on quite a lot of painkillers and also didn’t sleep much last night, but it feels good to “talk” as it were, as actual talking is still quite tiring and I am not managing to do quite as much of it as I would like. I have hopefully included a picture of what is obviously the key to my success and apparent 9-life ability – sweetiebobbles. Yay!

If it hasn't worked I think you can see it here: http://i55.photobucket.com/albums/g134/Tinypoppet/sweetiebobbles.jpg

YAY It's me!!!

I am pretty tired but I just wanted to write a proper update and more importantly say a HUGE thank you to everyone who has sent messages of support to me and my family, we have all been overwhelmed by the hundreds that have been pouring in. It is all a tad surreal, I can’t quite believe that this time last week I was in ICU, well, fighting for my life really. But you can't kick a small blonde-and-pink thing down for long, and I am doing miles better than anyone (myself included) could have predicted.

I woke up Wednesday morning feeling a tad sore and quite tired but put this down to the Salsa lesson which I may or may not have attended the night previous (which incidentally was tremendous fun and I highly recommend it). Had a lovely day lounging around in the garden with my sister and mum, but at about 10pm that evening the chest pain was growing worse and I just knew something wasn’t quite right. I rang the brompton who said considering my past experiences with pneumothoraxes (not to mention the fact I cant seem to do anything in a sensible or restrained manner) I needed to get to my local A&E to get Xrayed. On beginning to get dressed the pain accumulated rapidly so I phoned an ambulance, leaving a man to choose my outfit and pack my bag, which sadly resulted in me a) turning up in a little miss naughty PJ top and white floaty skirt, and b) the bag containing a couple of skimpy tops, one which my sister had worn clubbing a month or two previous. Hmm!

The X-ray confirmed that it was a pneumothorax, but a minor one, approximately 15% collapse. I was taken up to the ward about 2am and was reviewed the next morning. Due to glorious red tape, my pending transfer to the Brompton was in jeaopardy as I was…too well. They wouldnt take me by Ambulance unless I was “critical” (this should have been my warning, as it was said within earshot of my lungs) so I was very cross and planning on escaping via car to the Brompton until a nurse there strongly advised me not to, which I graciously consented to and sat there with a pouty face like a spoilt 5 year old at not getting my own way. At this point dinner was served, not quite sure what it was attempting to be, but it clearly failed, so I sent my mum off in search of edible food as my cousin was with me. My lung chose this 5 minutes my mum had left the room to finally stick two fingers up at the “non critical” status and collapse in a beautifully spectacular fashion, with both a full pneumothorax (all the air leaked out forcing the lung right down) and also a haemothorax (huge scary bleeding from mouth and chest cavity) ensuring that absolutely no one could say this didn’t qualify for blue light treatment. My poor mum got back to find me fading fast as my sats dropped to 60% and the docs cutting off my clothes (which I still haven’t forgiven them for as I loved that white skirt). I don’t really remember much except realizing that I was able to breathe again and just feeling the most incredible gratitude and relief that I was still here.

I was transferred to the brompton that evening, and settled down in the room opposite the nurses’ station, my mum staying with me again as I was still very unstable. Thinking that 2 collapses in 24 hours was quite enough drama I was very unaware that the doctor was actually quite concerned that something wasn’t quite right, and then sure enough at 5am, my lung went again, this time with a tension pneumothorax despite there already being one operative chest drain in place. They fought hard to get another drain in but by this time my CO2 levels were rising dangerously high. There is a machine which can help rebalance the CO2 levels called a bi-pap but they couldn’t use this on me as my lung was down, so essentially there was nothing more they could do. I am thankfully very unaware of most of the goings on, it is my poor family who had to endure being phoned in the early hours of the morning and told to get there asap. I wont try to put into words the respect and awe I have for my amazing family as I can’t. We were told the next 24 hours were critical and I was taken down to ICU. I think the high CO2 levels were acting as a kind of anesthetic as I was genuinely calm and felt very peaceful, and couldn’t quite believe what I was being told, expect for the odd symptom such as being unable to feel my arms and legs which showed my body was shutting down.

I said to my family “it’s not over till it’s over” as that is what I firmly believe, and then we set off to ICU to see what happened. 24 hours later, things were improving beyond all expectation. The team that are looking after me are amazing, they went and continue to go beyond the call of duty, and have been amazingly supportive to my family as well. The progress as you can see, kindly updated by my sisters, has been rather better than any of us could have hoped. It’s funny because when it a moment of crisis, you go into survival mode, and it’s only afterwards it has really hit me that that is rather a lot for a small person to get up to in a few days.

Sorry for the huge lengthy entry, writing it really helps me get my head round it all too, but essentially, I am now sitting up in a side room in pink PJs with pretty pink toenails and feeling very tired and sore and relieved. The next bit will probably be very slow, it is a case of taking each day as it comes and watching the lung to see when, if at all, the drain might come out. Huge abundance of love to each and every shiny star that has been cheering me on - the nurses have commented on how lucky and spoilt I am and whilst I would desperately love to disagree I know that would be lying!

Hey everyone, it's Lucy this time (Em's other sister),

I was at the hospital last night and she's doing so much better, and wanted to update everyone on a few things. Yesterday was a really good day, with more champion exercise biking, eating lots more solids (although her body isnt crazy about them right now), and she just looks so much more herself, with rosier cheeks and a chatty disposition.

A highlight of the day was Mr Richard Madeley (of Richard & Judy fame) dropping by for a spontaneous visit. He really brightened up Em's day (not to mention everyone else on the ward) and was his genuine and caring as always. Another high point was the lovely new and very pink pajamas bought by a certain star mother.

Em also wanted me to thank you all for your kind wishes, all the cards she's received as well as lovely emails and blog responses which I have been printing and passing on to her. So a huge thankyou to everyone.

Exciting news is that the surgeons are so impressed with her progress, they are aiming to take her off suction for the first time today, in order to see if the lung can support itself. This suggests they are pretty confident that it will, and if they are satisfied she will be put on a heimlich drain (a sort of minature chest drain with a small bag). These are giant leaps considering how dark everything looked only days ago. I'm convinced has something to do with all the positive thoughts and wishes being sent Em's way, and a lot to do with the fact that she's a feisty little warrior. I'll update you on the drain situation asap.

Thanks again to everyone, xxx

Another update from Abby here, a lot of improvement today not only has Emy given us more smiles and conversation today but she was even on the exercise bike!!! :)

Afterwards she was of course very tired and had a much deserved rest. Her appetite today has also increased, she has had several meals and by the evening was enjoying sorbet with sweetie bobbles!!

She has been on two drains but today one was clamped which is another step forward. She seemed very positive when I left and was overall a lot brighter and more herself today.

Thanks again for the lovely comments, we are going to get them printed up and to her a.s.a.p!

This is Abby again, just to update: Emy had a stable night and has now been in a fairly stable condition all day. This afternoon she was transferred from intensive care to high dependency where she is doing well. She is still smiling and being brilliant and this evening was actually sitting up and eating soup, a huge step considering the last few days.

Thank you everyone who posted lovely comments on the last entry, I will report them back to Emy she is very pleased to know people are thinking of her. As in the last post visiting is still very restricted so only the family is up at the moment but i will pass on messages left on here.

Will update again a.s.a.p as Emy is very keen to keep everyone informed!

This is Abby, Emily's youngest sister. As some of you may know Emily's lung collapsed on Wednesday night and has collapsed again since then. She was rushed into Epsom hospital on Weds and has gone from there to Foulis, to Intensive care in the brompton.

She is now stable, but very unwell. We have had some very kind messages asking if people can help but unfortunately all anyone can do at the moment is keep their fingers crossed for her. My parents are staying nearby but even they are not allowed to stay with her so visiting is unwise as it's on strict terms while shes in intensive care.

As always, Em is being a complete star and is very strong she has given us smiles many times through it all. She is calm at the moment and just trying to keep fighting though she's very tired.

Thank you for all your positive thoughts, Em knows everyone is rooting for her and is doing her best to keep going. I will update as soon as there is news.

Today, A and I went to sainsburys. It was fairly empty in there, which always makes me a tad more self conscious anyway for the strange logic that I feel if there are less people around the people that are there are more likely to hone in on me. Having selected all the necessities – trifle, hundreds and thousands (known to me as sweetiebobbles but I am trying to get out of that habit after asking A to buy me some more and he went and asked a sales assistant if they stocked sweetiebobbles which naturally was met with some baffled amusement and I was in serious trouble) ice-cream etc, we were queuing up at the till. As we placed our basket, the lady asked cheerfully how we were so we both smiled and exchanged plesentaries. I was absent-mindedly reading the cigarette packets (not much else to look at) when I heard the lady say “what’s wrong with her?” I turned to see who she meant and realised she was asking about me. Slightly stunned, A said “pardon?” and she said “is she ok” to which he turned to me somewhat thrown and said “are you ok?” it was like something out of a Monty Python sketch. I was actually pretty embarrassed and said loudly “yes I’m fine I am waiting for a transplant” which a) was a contradiction in one sentence and b)was slightly unnecessary but did shut the woman up.

Usually I would laugh about these things, but for some reason this did quite get to me this evening. I just felt a little sad of the reminder that of course people will wonder “what’s wrong with her” when they see me, unless that is of course they are used to people wearing plastic tubing up their nostrils.

I have just read Gloria Hunniford’s book “Next to you - Caron’s courage “ about her daughter’s battle to cancer, which she eventually lost. Obviously a completely different scenario to my current situation, but it was interesting reading about the way she dealt and lived with her illness. One thing that particularly struck me was her determination to keep it a secret. Her mother muses over various reasons, all of which sound highly plausible to me as they are similar to my own drive for coping with transplant and things the way I do, which is to tell anyone and everyone about it. I think it is almost me trying to trip up my illness and say “ha, see you can’t create a taboo or an underlying fear, this is all out in the open and just a part of my life”. So I talk about it. A lot I suppose, but interestingly for similar reasons as one might hide it it seems, being that I don’t want it to become a big thing. Well it is a big thing (stupid comment) but bigger than it has to be. Obviously the hiding it option was rather irradicated when I started wearing O2 24/7, but I think that is why I push myself, wear O2 on TV and go to pubs and things, it’s almost like that behaviourist therapy which resulted in a psychologist taking a patient of his who had an irrational fear of cars, locking her in the boot and driving around for a couple of hours until her hysteria had died down. Perhaps not very ethical, but it worked.

There doesn’t appear to be any point to this blog, more just I needed to vent and spill my thoughts, which would in fact be the point of a blog then. Oh be quiet Em.

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...

Just stopping by to confirm that lack of blogging this week is due to gorgeous weather, wonderful friends and family and muchly resting!

I am being nice and careful ready for the next two weeks, on Thursday Emmie and I are heading to the House of Lords (erk) to help launch National Transplant week, which runs from the 9th to the 15th July (I may or may not have already blogged as such but never mind!)

Last night Em and Brad treated me and my clever youngest sister who has just finished her GCSEs to an evening at Hampton Court where the flower show opening night was occuring. It was a really gorgeous evening, so incredibly warm, even at 7pm when we arrived. Em and I both had wheelchairs (me in faithful Denzel, Em in a hired chair) which made things a) more relaxed and easier for the two of us and b) more amusing as our poor "porters" attempted not to hurtle us out as we encountered various bumps and steps en route.

There were some gorgeous displays, including a beautiful carribbean one, which I may or may not have insulted by calling to Em "not worth going in there, there's just sand" meaning that the chair would get wedged (as mine did and I thought I may have to live there permanently) except the creators overheard me and were a tad miffed I think as they had put slightly more thought into it than "let's just dump sand here" !

After browsing, we settled down to our picnic and champagne, then watched the fireworks to finish off a truly spectacular evening. I shall put some pics up on here asap.

Am heading into the garden now (gorgeous garden I love it so) to settle down under a tree with a good book. YAY for the summer!

photos now included, yay!

Let's have a pinkandspangly post!

To start it off in a nothing-but-positive manner, I shall include a picture of joy - well if you ignore my feet that is, but it is a pic of my gorgeous shoes (with sparkly charms on and everything) and the hem of my skirt (with sequins and everything).

So that is clearly one exciting thing. Perhaps even more exciting than that is what happened on Friday, when I was feeling oh so down and puffy. My mum was round helping me wash my hair when the phone rang. As she went off to get it, I quickly reminded her to say that I am "busy" not "in the bath" as she has a horrible habit of absentmindedly telling that to strangers, and I heard her pick up the phone and ask who was calling. This was followed by a prolonged silence on her part, and then "hang on let me just find the cordless phone to take her". My heart started pounding as my immediate thought was it must be my transplant centre, why else would they insist on speaking to me. She brought the phone through mouthing "you want to take this!" with a delighted grin on her face so puzzled I took the phone. It was cosmopolitan magazine, I have been nominated by my sister for an award and have gone through to the final few. True to form, I started crying predominantly because I couldnt believe my sister had a)done this and b)kept quiet about it. Handily, my mother started crying as well so I couldnt even pass the phone to her, so I pulled myself together pretty quick.

As many of you know already I have the best family in the world ever but this really does mean a lot. I shant go on about it as I have a feeling that she reads this blog and takes praise worse than I do, but suffice to say it really touched me.

Next wonderful and spangly thing is my mum's leaving do, which was last night, was a great success. Loads of people were there to celebrate the entity that is my mother, and she cried sporadically throughout the evening, which is a good sign (she cried before she even entered the hall which is fairly predictable for her and a sign of joy not sadness). So big YAY for all of those things! I am ignoring lungs and health for this post but will merely add that I am at present still home (another yay) not Bromptoning encore en fois. Am off to admire my shoes some more!

Just a quick update and small apology really - I know I am being really awful at replying to texts and emails at the moment, so sorry all you lovely friends who are contacting me only to hear nothing! I am feeling really quite rough, which is quite disheartening as true to my 5 year old nature, I got terribly over excited about being released and of course immediately assumed I would be back to normal. Unfortunately (but hardly surprisingly) I am not, and not only that but I appear to be back where I was when admitted, lying in bed puffing and panting with a rather painful ribcage and back, and back on my O2 mask. Humph. I would swear but princesses never swear.

The hospital think I need to come back in, I am not convinced, so we have compromised, they have doubled my steroids, and I can stay out for tomorrow - which is what I really wanted as it is my mother's leaving fitznells gathering and there is no way I'm not going to be there - and then I have to ring the ward sunday and report on how I am feeling.

As those of you who know me can imagine, I have that pouty sulky face on which I sport when someone forgets to feed me grapes or carry me around on a cushion or similar. I think the trouble is that my muscles are all just so tired from the effort of breathing. And you know when you sprain your ankle or something you arent supposed to put any pressure on it? Well I cant just not breathe to give my chest a break, which is probably where the catch twenty-two situation comes in.

Anyway am stopping moaning and getting a grip. And more importantly a snooze. Ooh, good news is that I put our Emily's Angels target up to £3000 and we crossed it straight away! Plus it is nice and sunny out which HAS to make you smile doesnt it?!

I am being discharged! Yaaay!

The team swooped in this morning, glanced at me and agreed that I am indeed safe to be released back into society. I will finish my IVs at home, but have to come back up to clinic next friday so they can check that I am well enough to stop them. I can't wait to get home to own bed, good food, and my man and my family. Bliss!

Today has been rediculously busy as we went up on community newswire (which is a National press feed so we are thrilled to be on there!) yesterday afternoon, so we have already been receiving phonecalls from various Media areas who would like to cover our campaign. A big hurray moment, as my mum would say. At 8.30 we had an interview with BBC radio Bristol, and we have been doing and setting up various other interviews all morning.

I am feeling rather tired but incredibly smiley, as this looks like it is going to be a good high profile month for organ donation, and even better it looks like our campaign will feature strongly. So YAY for spreading the word and raising awareness. National Transplant Week is 9 - 15th July so if you havent bought your T-shirt yet you can do so now by clicking here and wear it that week with pride!

It's day 5 of my rest and recoup (coupled with some IVs to batter whatever is wreaking havoc), and I am doing well - yay! Breathlessness is muchly improved, as is walking ability, due to a rather good techique taught to me by the physio, which involves pursing your lips as you breathe out (splints the airways open, I visualise lots of tiny matchstick scaffolding-type poles for some reason).

I progressed so rapidly at first that they were talking about discharge "after the weekend" on Friday. Sadly I took this to be a promise of release today, when in fact it turns out that they want to review me on Wednesday, which is ward round day, when all the doctors come round, some donning their white coats specially for the occasion, and stare at you in unison. Technically Wednesday is after the weekend, so I suppose they didn't lie to me as such.

Yesterday I escaped for an hour in the afternoon and was wheeled down the road in search of a purchase. I feel that as inpatients we should be given an inner london allowance, similar to that which teachers get, as shopping whilst in a hospital situated on the Kings Road is not good for my bank balance. To my delight and sheer unadulterated joy, I found a full length deep pink skirt with sequins at the bottom which of course I had to buy as it would have been foolish and silly not to. My nurse said retail therapy beats IV therapy and I have to say I am inclined to agree!

My lungs have been behaving less and less well in the last couple of days, and yesterday, when I attempted to get my cereal and a cup of tea for breakfast and ended up sitting on the floor in breathless tears - this reaction incidentally always amuses me, as I seem to get tearful when I cant breathe which is possibly the least constructive move ever as then I cant breathe even more, well done Em - I decided it was probably time to ring the hospital.

They had decided to start Introvenous antibiotics on Monday but after an hour of supressed expletives and still no veins allowing access, we gave up and I went home. Still seem to be going downhill so I am heading in for a little rest. Am hoping to have internet access in there but if I don't, that's where I am!

A year ago today…

It was a beautiful sunny day like today. I had been in London in my CF ambassador role at a meeting the day before so this was definitely going to be a rest day. I decided to embrace the summer with open arms and put on a sundress, a nice new one, but hey if you save these things for special occasions you end up only wearing them twice, nice clothes are there to be worn.

Rather typically, I was sitting at the computer when my lung collapsed. There was no huge coughing fit, I merely cleared my throat and felt what I can only describe as a similar “ping” to when the elastic on cheap underwear goes (have just betrayed a student secret of cheap undiebuying oops).

Enough of underwear…I felt a small ping and my heart started pounding. Now I am not psychic, I have never claimed to be, and I do not understand these things, but what happened next to this day doesn’t really make sense. I had no other sensations at this point but I leapt off my chair and walked quickly to Claire (my oxygen machine) and turned her up to the maximum 5 litre flow. I then grabbed the phone, realised I was still connected to the bloody internet¸ disconnected and dialled 999. Whilst doing this I opened the front door got outside and shouted “fire!” (absurdly following advice from some cheesy teen magazine advising if you are being assaulted to shout fire as people are more likely to come to your aid – who says magazines don’t teach us anything.) it was only at this point I really began gasping for breath. So the inexplicable part remains, how did I know what was about to happen therefore what to do? I had previously had a collapsed lung but it was a completely different experience and felt nothing like this, so experience would have fooled me further. Personally I believe it is an innate survival instinct which kicked in, but for whatever reason I had managed to get outside before my breath disappeared completely and I was forced onto my knees.

My next door neighbour was at my side in seconds closely followed by two other men. Amusingly (well I found it so, even in my breathless state) having shouted “fire” it turns out the latter two were firemen. My neighbour took the phone from me as I couldn’t speak enough to be understood by the operator and explained as much as he could. I managed to get them to understand the world “pneumothorax” (a remarkable achievement considering the volume of my speech and the chaos at the time) and the ambulance was on its way. One of the firemen sat and held my hand till the ambulance came. I think the only thing I said to him was “please don’t let me die”.

That was the beginning of my biggest challenge yet. My lung had obviously had quite enough, as even after surgery, stapling, a day on a ventilator to allow it to recover, the tear refused to heal, and the lung still was not inflating in an agreeable manner. Because it would collapse like an inebriated teenager unaided, I spent 6 weeks with a suction pump attached to me during which time I was attached to the wall which was not fun, I could literally go no further than the end of my bed.

Never one to do things by halves I also decided to get a couple of infections to spice things up a bit and required the odd blood transfusion and once a litre of fluids squeezed in extremely quickly by a nice doctor when my heart was dancing around at dangerously high levels. I spent a month in High Dependency unit, where it is customary to spend 24 hours and my weight plummeted to 6 stone (I have never liked the waif look.)

At first everyone was confident the lung just needed time to mend. Then as the weeks progressed and I was still on suction to hold the lung up, confidence dwindled. There was talk of me staying in till after my transplant which filled me with a quiet despair. After 6 weeks of being stuck to the wall I finally came off suction. Prior to this I had been moved to a side room, as things were stabilizing, which was an oddly daunting experience as in HDU there is always a nurse with you and suddenly I was alone for the first time in over a month.

I learned many things from this experience. That even when things look incredibly black, there is still hope. That things are never black and white, even in medicine. But most importantly, that you are stronger than you think, and this gives me a strong reassurance for my recovery post transplant.

Today is a huge celebration. That episode lasted 3 months and I didn’t fully get back to normal till around November time, and look at where I am now. From being told I might be in hospital or have a chest drain in indefinitely to going dancing, sightseeing and generally being a bit loud and naughty.

If you have managed to read the entirety of this post I applaud you as it is ridiculously long, sorry about that. I want to end by suggesting a good deed for the day. A fellow lass waiting for transplant (not CF) suffered a similar collapse in February. She was on a ventilator for weeks and is still in hospital with no signs of an escape (also proof that I should be thankful for the recovery I made). She has a website with a guestbook on it, and her dad prints out the messages for her to read. Please go and leave her a message, about anything and everything, as I cannot tell you what the support from all my friends did for me, particularly on the hardest days. After that go out and enjoy the sunshine! YAY life!

This has been one of the busiest weeks in the history of creation of mankind. Well it has for me anyway. I really am so proud of my little lungs, they are champions really. Last weekend was the hen weekend! Woohoo! It was absolutely fantabulous. Saturday was probably the busiest days of the three, comprising of a bollywood workshop, meal out and a trip to the local club. All of which I attended. The instructor was called Dimple - fantastic name but made me slightly afraid as to me it suggested pole dancing or similar. Anyway she was lovely, a good combination of encouraging and praiseful, (is that a word?) yet pushed us a bit which we needed at times. We wafted around a lot attempting to be both graceful and energetic and it was really good fun. Most definitely provided me with a workout, and I had to switch to my mask half way (felt like a big deal, haven’t worn it out with friends before) but it was either that or pass out blue on the floor which I didn’t think was very in keeping with the bollywood style (no sitting down was not an option, I was having far too much fun.)

At the meal we presented the hen with a box of goodies including all the obligatory tack such as flashing L plate and handcuffs to attach to her person. With our hen still wearing all of these (with great style I must add) we trekked off to the night club, stopping en route for said hen to jump inside a fire engine and pose with a slightly stunned fireman. I must admit at the club I did feel overwhelmingly self conscious with my O2, as, let's face it it isnt something you see every day so people were looking. This was soon relieved by some bloke (nice guy, not the brightest crayon) asking me what it was. The music was loud so I simply gestured at the large word OXYGEN emblazoned on the side to which he paused looking at it then said "Yeah I know, but is it real?" Had me and the girls in stitches for some time afterwards at the thought of someone who overthinks things that much to go and get a fake oxygen cylinder and manage to obtain the tube and nasal specs to take out clubbing with her...

Sunday was a much needed “hangover roast” (thanks Mrs H) and Monday included a trip to the Green fair – a rather hippy event which we hijacked for our own purposes, namely to have a picnic in the sun with champagne, strawberries and scones. Imagine my delight when at the fair I stumbled across a stall selling adult sized fairy costumes! On finding a fushia pink one I was over excited to the extent of temperature induced pink cheeks, and could sadly think of nothing else until I had purchased said garment. I have a good reason anyway, I can wear it for the run in September. Otherwise I would never have bought it, honest...That weekend I also attended the 60th Birthday of a family friend, and instead of presents he requested donations for the CF Trust, raising over £1000. I am not very good at expressing myself in person about these things but I was very touched and it was a great do with muchly dancing due to his mauritian roots.

Being half term week, we took the opportunity to go away for a few days – cue minibreak to Wiltshire to see very special friendies and to stay in a cosy B&B in a room that must had been created especially for me – it was just SO pink and frilly! We had a wonderful couple of days down there, it was gorgeous and sunny which helped and we got out and about a fair bit, again my lungs doing admirably for such a busy time.

Yesterday was my youngest sisters birthday. She is 16 now, and I cant quite believe it. On our 16th birthday, each of us have had a big banner type thing made, which contains photos throughout our childhood with amusing captions creating a story underneath. I remember mine so well, I walked into the classroom of the music school I worked at on a Saturday morning and it was up on a huge silver sheet – obligatory naked baby photo and all. Smallest sister seemed to have a wonderful day yesterday anyway which is what it was all about – still not liking that she is so grown up, although she will of course always be my baby sister, the other one is 18 and living it up at uni and I still think of her as a tiny small! Mind you the two of them are far more grown up than me, I think they just let me pretend I am older therefore wiser to humour me.

Like I say, I am incredibly proud of my little lungs - they did an incredible job and I was able to do far more than I thought I would. Next week marks a year since my lung collapsed in a truly spectacular fashion. I am going to blog about it, so that I can get the memory out of my system (I am already having dreams about it which sounds v daft but am sure that will pass). If someone had told me the schedule for this past week when I was in hospital a year ago, I would have laughed. Well actually I would have breathed at them with a look of sarcasm and humour on my face. So what better way to mark a year later than to have been to 3 parties in a week plus a nightclub?! Just imagine what I'll be like with working lungs...