Much shorter post than last times today....(thanks for all your input by the way)

I had a gorgeous weekend, randomly spent in Vienna and Bratislava. We flew out on Friday, which was exactly one year after “black Thursday” which was the one time post transplant that my family really thought they’d lost me for good.

Both places were fascinating, I had been very eager to see Vienna as I had heard quite a bit about it but I have to admit having been completely ignorant re anything about Bratislava (which is the capital of Slovakia for anyone who didn’t know) and it has the most beautiful old historical town centre, steeped in history. I’m not really one for appreciating architecture but even I could see how stunning it was. It helped that we had a really brilliant guide who dropped in nuggets of information as we wandered round, keeping it varied and interesting.

I’m not a religious girl but as we wandered into one of the most beautiful churches I’ve ever seen in Vienna, I lit a candle for my donor and had a quiet moment to thank them for allowing me to be here at all.

We also attended a Slovakian party (long story which shan’t be recounted on here) and it was fantastic. The people were so friendly, my goodness can they eat….but the food was delicious, the mountains of homemade cakes being a particularly memorable speciality. Then dancing into the night to various folk songs that everyone in the room (bar us) knew the words to – young or old. A really fantastic weekend.

There was an interesting documentary on last night about CF: A Boy Called Alex. He came across really well, open and upfront and obviously a very talented and determined young man. The doc had the usual traits which annoy me (Dramatic Voiceover: “...but Alex has a disease which could ANY DAY end his life”) but all in all it was a very good documentary. Well done to him and his family for raising more awareness about CF.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm sure you've all seen the news over the last 24 hours regarding Gordon Brown's announcement that he is in favour of changing our system to one of opt-out (where it would be presumed that you wanted to be an organ donor unless you registered your wishes that you didn't or unless your family knew of any key reason you did not want to be one at the time of death).

You may have even seen/heard me either yesterday or this morning (Sky, Channel 4 and 2 radio stations).

Anyway what I would really really like (please) is to hear some of your opinions. I am genuinely curious, and contrary to most other areas of organ donation don't hold a strong opinion one way or another when it comes to opt-out. Some people's misconceptions are concerning but I am hoping ongoing publicity will help iron those out.

So please, annonymously or with your name, whoever you are, tell me. What do you think. Opt in or opt out? And more importantly why....please be brave, I could do with hearing what others think.

Then I shall cheat and construct a post in a few days using all of your genius comments. Or something.

I've been trying to think how to explain Friday but I have decided that actually that balloon picture says all I need to say really. We released them with little messsages tied to them for my donor. It's hard to know what to say, there aren't really the words.

It was a beautiful day, tinged with sadness, filled with happiness and gratitude. I wanted to do something that morning that I hadn't yet done, and that would've been impossible to do prior to transplant....so I attended an aqua aerobics class.

I absolutely loved it. It is however the most amusingly unattractive form of exercise I think I've ever participated in. Made even more amusing by the stylish sleek instructure standing on the side calmly demonstrating "and push through the water, in circles, now faster...keep those knees up!" whilst those of us in the water flounder about, panting and splashing in a pathetic attempt to look half as glamorous as she does.

It really was fabulous though and I kept up much better than I thought I would, so I'm going to try and make it a regular thing.

It's been a bit strange since Friday, as I have now crossed that monumentous threshold, I am no longer in my 1st year of Transplant. As far as I know some meds may now change and certain restrictions lifted (although I may have already both travelled abroad and flown - oops) as the team recognises that things between my lungs and I are going rather well.

This time last year I was, well, pretty unconscious really. This year I am trying to be as active as I possibly can to make it as different as Mr different from different land (as my mother would say).

The prospect of the new year stretching out ahead is so exciting; and this time hopefully I will get to experience a full 12 months, rather than be stuck in hospital for vast quantities of it.

Here's to a happy and healthy one for all, yay!

4th January 2008. More to follow soon.

Happy New Year all!

What a fantastic New Year it was. We danced the night away, and it's only as I was on my way home that I realised for the first time in years... I didn't cry. It surprised me as I genuinely expected the usual tears to flow, as it has been a year and a half to say the least.

I am full of mixed emotions as tomorrow draws nearer. I didn't sleep last night, although I wasn't aware of anything being on my mind. I have been running round like a headless chicken for the last 24 hours; I think it's something to do with me trying to prove to myself that I am making the most of this amazing gift that I was given almost a year ago. I worked really hard at the gym both yesterday and today - I want to show myself how much life has changed.

Hundreds of emotions seem to be flooding through, many of which are taking me totally by surprise. The below letter is a result of some of these feelings, it's a bit strange I know, and as I say I didn't expect to miss them, but there you go, the human brain is a weird and wonderful thing...

To my old lungs…

It’s been almost a year since you and I went our separate ways. As the anniversary draws near I am finding the most unexpected feelings and emotions are welling up – ones I didn’t even know I had.

It’s almost a feeling of grief that you have gone. I mean I don’t miss your terribly naughty attention seeking antics or life-threatening stunts, but you were quite literally a part of me, and we spent 22 years together, and during that time you worked damn hard.

I guess what drove me to write this is the feeling that you never get thanked. You are always painted as the bad guys and are the sole things which were merely disposed of as soon as the opportunity arose. And yes you definitely well and truly needed replacing but you exceeded all expectations in your capabilities of getting me through things. When breathing seemed so hard as to almost be impossible you kept on going, working hard to keep me alive till I got the call for your replacement, for new lungs.

You overcame the greatest atrocities that CF brought your way – surpassed obstacles that no one thought you could. I remember more than once hearing “This is too much for even Emily to bounce back from” and fearing they might be right, but even when things got so bleak my family were rushed to my bedside in the early hours, you carried on working, out of stubbornness if nothing else. You were a part of me, went through everything with me for 22 years, cried, laughed, sung, shouted with me, and fought back against everything that CF threw your way.

Nearly a year since you became superfluous – thank you for 22 years of magnificent service.

So Christmas is over; I hope everyone had a fantastic one…mine certainly was. It’s funny, I was going to write about all the wonderful and amazing things I did this Christmas, but then I sat and reread last years blog and it’s pretty much identical! Except this time, I could actually participate rather than be a spectator. I was able to join in when I wanted, eat when I wanted, get up and sit down when I wanted, talk, sing carols, open presents…basically everything that had been so very hard and restricted last year was suddenly an open and easy option to me.

Its times like this – when I am repeating actions carried out with old lungs – that it brings home to me just what a struggle it really was. I remember Christmas dinner so vividly last year; within about 4 mouthfuls I was so tired and out of breath I lay down on the sofa again. Last year by the time I had had a shower and washed my hair, I was so exhausted I wanted to cry. Don’t get me wrong, I had an amazing Christmas last year, but it took a hell of a lot of effort. And this years was just so…easy. I can't describe how lucky I feel.

On Boxing Day, it was me who was insisting that we go on the traditional “we’ve eaten too much let’s try to feign some exercise to make ourselves feel better” walk. We strolled briskly down the road and I was grinning from ear to ear – a task that in childhood was resented as our parents made us go (it was warmer inside), which then as I grew older became almost impossible, which was now accessible to me once again.

I had a teary moment on Christmas morning when thinking of a family somewhere waking up for their first Christmas without a loved one, but hoped that they can take some small comfort knowing I am alive to see another Christmas thanks to their generosity of spirit. 31st December 2006 I sat with tears streaming down my cheeks as Big Ben struck midnight – tears of relief at still being alive, of fear of the unknown, of sadness of what might be ahead in 2007 should nothing change. I cannot even begin to fathom how I will feel this year…but I know I shall be out partying somewhere as no matter how huge it is emotionally it is cause for a huge celebration. This is a New Year I genuinely didn’t think I’d see.

And now here we are – a mere 6 days before my very first transplantaversary. I am very excited but already get quite emotional thinking about it. It was the beginning of one of the most difficult struggles in my life so far, but the start of a whole new chapter for me to embark on. Whilst a new door was opening for me, someone else’s was closing, and it does get to me more and more the nearer we get to the big day. Such a whirlpool of emotions. I have written on here more than once about how there is no “sad” or “happy” event – merely a mixture of everything in different quantities and my transplantaversary will be no different.

Oli is in the Mirror today!

Although you can read it here you'll need to buy a copy to see the man himself post transplant...

Go Oli! YAY!

If I had this tree, I have a feeling I'd be minus a husband...


5 MORE BIG SLEEPS!

I'm like a child at Christmas I am. Oh no wait....

I still can't believe that this was me merely a year ago. My mummy did her annual Christmas shop with her mummy at the weekend and reminded me that it was somewhat interupted last year when she had to return home as I was finding breathing so difficult (even on maximum oxygen) that I needed her to come and be with me as it was pretty frightening. It's just so so weird to think that little did I know a matter of weeks later I'd be getting my new lungs.

I got a bit sad yesterday thinking about my donor family, who somewhere out there must be dreading this Christmas. I wish I could do something to help them. Thinking of everyone out there who has suffered a loss and might be finding the festive season particularly tough.

I really hope that rereading my blog gives those waiting for transplant, or indeed those suffering any difficult episodes in their lives some hope. Things can change beyond all recognition, you just don't know what's round the corner. The unpredictability of life is what makes it scary but also what creates hope. I think personally I'd prefer unpredictability if it means there's always a chance things could get better, rather than knowing what my lot is and having an unchangable path set.

Learn from yesterday, cherish today and hope for the future, I think that's a pretty good balance.

Wishing you all the most fantastic Christmas - may it be fun, festive, sparkly and filled with laughter and joy. Thank you all for your support, friendship, wishes and thoughts this year; I don't think you can ever realise how much a little message of support or comfort can reach out and touch someone at a time of need.

Bit of a deep pre-Christmas post there! I am off to continue wrapping presents and adorning things (predominantly myself) in glitter. YAY!

written yesterday but not posted as internet decided to pretend it was not there when it actually was.

I decided to go to Bristol for a two day visit; the town where I spent three of the happiest most fun-filled years whilst studying at university. I had a list of people to visit, the majority of which had not seen me (or had only briefly seen me) since my transplant. I was very blaze about it all - I think because it feels like a second home to me - and had absolutely no idea just what a hugely emotional trip it would be.

As I drove into the town centre, a big grin made its way across my face; I really do love Bristol, not only do I have a million very fond memories there but it’s a great town in its own right. I drove up to the flat where I lived for two years to be greeted by a manically waving and grinning ex-flatmate, who is still there as she’s a medic therefore will be studying for what seems to me to be the rest of her life. The flat hasn’t changed much, in fact to such an extent that there was still 2 old (empty) oxygen cylinders in the hallway and Claire’s eyes (the eyes we made and stuck on my oxygen machine) are still pinned on the notice board, which made me giggle.

Me and my girlies went out for lunch in one of the local cafés which I never managed to get to as it has stairs in and I tended to go for ground floor close proximity places. Whilst we were munching our lunch and catching up, I suddenly realised; these girls have never known me as a "well" person. I mean by the time I moved to Bristol in 2002 my lung function percentage was already in the 40s and I was on 3 monthly IVs. It was quite a peculiar realisation as whilst they shared possibly the biggest part of my life with me so far, it was only a small segment time-wise, and so the “well” me is a new and novel thing, even more so than for people at home.

Walking along the roads past University buildings really bought back sharp memories of how I used to struggle; I'd arrive at the French department which was about 2 roads away from the flat breathless, sweating and exhausted, and would ensure I arrived about 20 minutes early so I could sit in the foyer and recover. It was all just normal life to me then however, and I didn't think twice about these allowances which had to be made for naughty lungs.

Of course it’s not just the people – I’d never been in Bristol as a well person either, although I never thought of myself as ill when I moved there to begin uni. I’d go to pubs and clubs with everyone else (mind you I still did that even once on oxygen) but I’d always be that little bit slower, be the one to get the taxi back, be the one to sleep all day the next day. Not that any of that mattered – as there were quite a few students who’d sleep all day completely independently of any health issues.

This morning I decided to wander down to the Drama department. As I wandered up the road, which sloped gently upwards towards the department, I was surprised to find tears pricking my eyes. I didn’t realise how emotional it would be. I didn’t walk up that road once in the final year; I was always either driven or pushed in my wheelchair. To walk towards the door just seemed so significant.

I figured everyone would have gone home as term ended last week so was delighted when I saw my favourite porter in the doorway, and even more thrilled to find quite a few members of the department still hovering around. The reaction from everyone I saw was the same; a polite “hello” with a look of “I’m sure I know you” followed by a very slow realisation sometimes prompted by me saying “I suspect I’ll seem more familiar to you if I sit down and stick some tubing on my face.” One tutor who only taught me in the third year commented “you look so different standing up!” but everyone was delighted and so lovely. They’d all followed my progress (always most bizarre when everyone already knows all the news you’ve come to tell them) and it was so lovely to catch up with them all. I had great trouble not bursting into tears on several occasions as I relayed events over the last 2 years; so much has happened since I was last in those four walls – which incidentally was when I was given day release for graduation whilst still having a chest drain in in the summer of 2005.

After tea, chats and a great catch-up, I headed towards the BRI to see the team that cared for me whilst I was studying. The look on their faces was fantastic as I walked in, and we hugged laughed and chatted whilst I threw many a wedding photo at them, until it was time for me to go. I am hoping to go back to the Brompton too at the beginning of next year as teams who care for you when you’re so sick don’t really get to see the positive results as your transplant hospital takes over your care. They worked tirelessly to get me that far and preserve my health until a transplant materialised and it’s very important not to forget that.

I drove home this evening tired, a little emotionally drained, but very very happy. Bristol is much the same as it ever was, but my life has changed beyond recognition and that made this visit a very strange but beautiful one.

We’re baaaack! We had an amazing time, Budapest is breathtakingly beautiful. For those who are as daft as me (probably not many of you, here’s some information about where we went.

I’m a bit of a nervous flyer – I wasn’t always so but when I was about 17 I developed some large cysts in my lungs and there was a danger of them popping (which many years later they did. Repeatedly). I was told at this point going up in an aeroplane may in fact make them pop and cause my lung to collapse, but that hopefully they were stable, and the only way to tell for sure was to fly. So that first flight (as I’d be damned if I was going to not go on holiday ever again due to something that may or may not happen) was a pretty scary one, and I think dented my confidence.

However the flight to Budapest was fine. I have to remember I have healthy lungs now that can cope with high altitude and cabin pressures, and after about the first 20 minutes I stopped saying “are we nearly there yet” with my eyes squeezed shut and began to relax. I even managed to doze, woohoo!

We arrived late afternoon so ditched our bags at the hotel and went straight into the centre. It was nightfall by now, and all the streets were decked in Christmas lights as we walked towards the square where the famous Christmas markets would be. We stopped at the first stall to grab a glass of mulled wine and wandered through the little Christmassy kingdom full of jostling crowds. The stalls were beautiful and so brightly coloured; candles of all different shapes sizes and colours piled high, hand made Christmas decorations of dried fruits and nut shells, painted, glittered and sparkling, scarves of every colour and pattern imaginable, large wooden huts with the most delicious smells coming from them as steaming bowls of soup were served to hungry shoppers.

Made a tad hungry by all the scents of food, we sought out a restaurant and found ourselves climbing down a winding staircase into a dark high-arched tunnel filled with candles to get to a restaurant in an old converted wine cellar. Hungarian food is very good – there’s loads of choice, a key speciality being of course the famous goulash which we had more than once. I may or may not have eaten far too much during our few days there.

We also ensured that we visited the Spas that Budapest is so famous for. The first one was my favourite as they had outdoor baths there, so you’d sit in steaming hot water with the icy wind whistling over your head. It was so surreal and rather magical, especially as dusk fell.

We saw all the main sights, sampled as much food and drink as we could (I even tried the local pear brandy which was pretty good, says she who knows absolutely nothing about what brandy should or should not taste like). I may have bought a few clothes too. Oops.

Whilst there I thought quite a bit about this time last year. A and I always try and get away for a few days around Christmas and over the years our destinations have got increasingly closer to home. In 2006 thanks to the Chloe Janet Ball trust I took A to a luxury hotel in London. It was such a different experience, we were overjoyed that I was merely well enough to “be” in the hotel, and spent pretty much all the time in the room, with me sleeping intermittently, trying constantly to catch my breath with my oxygen machine as high as it would go. It’s fantastic that we appreciated and enjoyed that small but significant break so much, and I think experiencing that end of things made this honeymoon even more special.

I realise I am now beginning to waffle therefore shall close with a few more pics. Enjoy!
Christmas Market

The tunnel to the restaurant.

It's a Hungarian Tram behind me. I got a bit excited.

Harefield today – my first clinic appointment in 3 months! The weather was pretty atrocious this morning meaning the roads were just as bad, and I drove past two pretty horrible accidents (I am not very grown up and it makes me very sad when I drive past these things). Got there late (doh) so straight in for bloods. Clearly I hadn’t drunk enough this morning as even after 3 attempts by one of my fave phlebotomists who usually has no problems with me, I was pretty damn stingey.

I knew I had a busy day ahead as I had several things on my agenda; Christmas cards to deliver to each ward, a huge tin of biscuits to wave at any passing staff, and of course wedding photos to show off left right and centre! Oli and another person I know are inpatients so I wandered off to wave to them as well. Oli is looking fantastic (although if he’s anything like me he will want to pelt people with anything in reach who keep saying that to him) and it was so lovely to see all the staff again on various wards. There was much cooing and admiring of photos and chatting excitedly about the honeymoon which is on Saturday!

I may not have blogged about this…we weren’t going to go on honeymoon as A had used up all his leave from work (and more). Well I guess technically I’d used it all up for him, but either way it wasn’t looking likely until his lovely company decided their present to us both would be to send us to Budapest for 4 days to experience the gorgeous city and famous markets, hopefully including some lovely Christmas ones. I am really rather over excited about it all. How sweet are some people in this world…

Anyway back to today; X-ray was fine, lung func up quite significantly which they were all delighted by as I am nearly 1 year post and it’s still moving upwards, yay! The only thing that was a tad amiss is my creatine levels seem to be playing around a little bit. I really know very little about kidney stuff (in fact what I do know you could probably write on a postage stamp) but I do know that we don’t want jumpy creatine levels as it is some sort of indicator of kidney function. Or something. Anyway it’s the first dodgy result like that I’ve had since discharge so it will be followed up once we get back from honeymoon. I’d rather appreciate it if my kidneys fell into line and didn’t get too over excited like that again resulting in much more normal blood test results.

All in all a good day. And am clear to fly off on Saturday – eep! (never been the keenest of flyers). Will be back and posting with pics some time next week.

Oli is doing better, fingers crossed for onwards and upwards from now on.

Also excitingly (well for me) I have been married one month today, and couldn’t be happier. Yay!

On Saturday night we went to a friend's transplantaversary celebrations (his brother gave him a kidney a year ago). It was a great evening, but strange for me for two reasons. Firstly, it was my first real time meeting new people, or at least people who don't know me in the transplant context or don't know any of my background, since I had my op. Before my transplant I was a) fairly easily identifiable due to all the tubing and b) it was clear there was something wrong health-wise. Now, I was meeting and shaking hands with various people, and the inevitable “so how do you know X” comes up.

I decided not to opt for the “I’m the one with the new lungs” and went with “through charity work” instead. I have never had a problem being open about my health and history, even before it became so evident, but it just felt so strange to be able to become an anonymous figure again, someone where no details are revealed unless I make them so. The last real time I was able to do this was probably the start of University – when you have that huge dilemma of how much to tell people, as these are the people you will be living with for the next year or so, but at the same time you want them to get to know you on your own merits, and not with the premise that you have a chronic illness. I don’t think I will ever shy away from talking about my transplant – I’m too into raising awareness and also too much of a drama queen and quite enjoy trying to watch people digest the fact that I am on my second pair of lungs – but it was a novelty to just be a blank canvass and be able to divulge whatever information I chose.

The festivities also reminded me that my transplantaversary is coming up very soon. All I know so far is that I want to do two things. I want to go somewhere quiet to reflect and have a little cry for the family that is marking a very different anniversary, and I want to get together all the people I love to celebrate and say thank you. I have written before many a time about how things in life cannot be divided into happy and sad occasions, and this day will be no different. On the whole it marks the beginning of my new life, a chapter which is an incredible gift and the opening of so many doors which would never have been, but it also marks the start of some of the hardest two months of my life, of a great loss for someone somewhere, and of a hell of a time for my family as they watched me battle complication after complication.

I can’t really predict how I will feel till the day. All in all it will be hugely positive, I’ve made it a whole year post transplant, and bring on hopefully many more. But I won’t be forgetting why I am able to be here and celebrate this special day, and will find a way to mark it. Somehow.

Oli has been moved back to ICU due to an infection and is fully sedated again.

This will be familiar to those who know my story (although I never left ICU in the first place) so please please keep him in your thoughts, as he's got a fight on his hands, but I am confident he can do this.

www.smilethroughit.com

Yesterday I spent the day in a perpetual state of excitement which resulted in feverish cheeks and having to lie down quietly for a bit.

Last night I finally got to see my favourite comedian live, the one and only Mr Bill Bailey. For those of you who still do not know any of his stuff (I have berated you on here before) then please will you go and equip yourself with a copy of Part Troll!

I have been trying to go and see him for a long time; first time I wanted to I was in Bristol, but failed to get a ticket in time. Then I was too poorly, then Laughter for Life happened....and I got new lungs (yay!).

So was rather excited when I managed to get tickets for him latest tour. Even more excited when A and I got VIP passes to the drinks after the gig and I got to meet him! He's a really genuine guy and keen to keep supporting LLTGL which is fantastic news.



The whole night was awesome, very very funny, and for me a strangely big deal. Not only because I am a rather large fan, but because it sort of symbolised the fact that I am no longer in that fragile state where it's risky to make plans for 24 hours time, let alone for a month or so down the line. I can now make plans and stick to them. Which is quite exciting really and opens up the possibility for all sorts (ie holidays) which had become far too difficult a task prior to transplant. I booked these tickets months ago, and remember feeling everso wary about whether I'd be well enough to make it...but repeated hospitalisations are a thing of the past. I have new lungs.

This year has been such an incredible journey, and there is still so far to travel, so many possibilities and new experiences which lie ahead....I can't help but be an over excited child who's constantly grinning from ear to ear.

Oli is still doing fantastically well, he's really flying. Mentally it's all very tough at this stage, whether you are progressing well physically or not, so please do consider sending a little card to make him smile.

On Monday I had lunch with a lady from the Donor Family Network. It was really nice to actually sit and chat with her and not just say a flying “hello” at an event. She lost her husband and decided to donate his organs, then later on got to work on the DFN to help support others who are in a similar position to her.

She very kindly bought with her two of the letters she has received from recipients, so I could see what kind of thing other people write. Reading them was an incredibly moving experience, you could really feel the emotion and desire to express significant gratitude behind the words.

I was talking to her about my transplantaversary, which is actually approaching quite fast. Obviously I am going to celebrate as it marked a new beginning for me, but at some point in the day I need to go somewhere quiet, on my own, and shed a little tear for the family who will be marking a very different anniversary in deed.

The DFN lady was telling us about their new project; it is to build a memorial garden at the NMA in Staffordshire, which will have four parts to it: For donors and donor families, for recipients and their families, for those who died waiting for transplant, and those who wanted to donate but were unable to (there are various reasons for this and apparently it’s more common than I would have thought). The garden sounds like such a wonderful idea, it will give people like me and everyone touched by transplant or organ donation somewhere to go and reflect. They are spending the next year fundraising solidly to make this project successful, and Live Life Then Give Life are very keen to get involved, so we will be promoting any ideas they throw our way. I am so very excited that my new lungs have given me the energy to do so much more. I love it!

Oli clearly trying to demonstrate to me how it should have been done.


Cheeky sod.

Everything has been a bit up in the air since the last blog as on Monday night, my good friend Mr Oli texted me informing me that he was on his way to Harefield. For some reason I was totally over excited by this whereas I usually manage to remain calm, as there is still a long way to go before you get the green light as we say. Anyway I just had a really really good feeling about this....but then I've had that before and been wrong.

Some of you may know Oli through his work as a CF ambassador, others may have been priviledged enough to hear him speak at Laughter for Life in March. Some of you don't know who I am talking about but rest assured he's a rather fabby guy.

Further texting ensued throughout the evening ("I'm bored. Oli") until the fantastic confirmation that he had the green light and would be going into theatre around midnight. I promptly burst into tears (rational and helpful) and started texting everyone I could (again helpful). News spread like wildfire that night and he already has loads and loads of messages of goodwill, love and thoughts stocking up.

Surgery went well, he is already doing absolutely brilliantly but it's very very early days yet. He's never been quite the drama queen I am so I am hoping he will have a slightly more mundane recovery.

His family are keeping his blog updated as and when they can: www.smilethroughit.com

Very very excited for Oli and his family; this is hopefully the chance of a new life full of the most amazing opportunities and experiences. Please keep him and his family in your thoughts, and of course that special person who has made this new path open up for them, his donor.

I went shopping in Wimbledon today. Arriving at the Station I suddenly found myself swept back in my memory to when I used to come here to get the tube to the Brompton. I headed towards the stairs, remembering how daunting and foreboding they would appear and how I would haul myself up holding tightly onto the rail and stopping a few times on the way up to catch my breath.

As I got closer to the stairs I made the executive decision that my first time going up them in many many years should be a memorable one, for myself and for any poor commuters in my path, so I bounded up them as fast as I could, stopping at the top rather breathless but in a good way; the way that healthy normal people feel on any stair-bounding exertion.

I met Gaz’s mum in Wimbledon, for a spot of shopping and a generally good natter. We shopped and shopped, and chatted and chatted, and ate in between, and had a generally lovely day, although it appears we both need to examine the definition of Christmas shopping which may or may not have resulted in more purchases for ourselves than it did for other people. I miss Gaz to pieces still, even nearly 3 years down the line, but it is so nice to have developed this friendship through him…mind you I know he would have been rolling his eyes at the majority of the goings on during the day.

There has been a topic on the CF forums about sympathy, and most people have posted on it stating how much they hate it and find it patronising. I am a bit torn on this one. On one hand I have certainly experienced that look (and actual statement) of “oh you poor thing” staring down at me, head cocked gently to one side in sympathy. Yes it can be annoying but more than often I found it amusing, plus I think that some of the comments were a bit too angry on the boards. I mean, just put yourself in that person’s place; how are they supposed to know how to react? A friend’s mum was diagnosed with cancer quite a while back, I was rubbish. I didn’t know what to say except for “I’m so sorry”. That good old cliché. If when surrounded by death and illness as much as I have been you still can’t find the right words I think Joe Bloggs in the street should be given a bit of a break.

Mind you if it’s anything like the experience Jac talked about in her stability post, you have the right to be a tad annoyed...

I was woken from my sound sleep this morning by a phone call from a panicked mummy.

Her lift had somehow not picked her up and she needed to get to work, so I threw on a bright pink jumper (bright enough to wake me up) and headed straight for the car in "Emily to the rescue" mode.

Stepping outside took my breath away, both due to the sheer air temperature and the beauty of the glistening outside world. I live on a fairly pretty world, and having everything decorated in what in my opinion looked a bit like sparkly lace was rather exciting. Last winter, I was lucky if I opened the curtains before 11 and would certainly not venture out of the house in cold weather as my lungs would instantly through a huge strop and start bleeding in retaliation.

Having not driven this early in the morning for rather a long time, I had completely neglected the fact that with cold weather comes something else: icy cars. I sat in the car and switched on the heater, in the naïve optimism that the ice would magically evaporate from the car. After 2 minutes or so when said ice showed no signs of doing such a thing, I decided brightly to “wash” the ice off by washing the windscreen; cue newly frozen sheet of ice on top of icy windscreen. I have no scraper, as I have never needed one before. Whilst I waited for the heater to work its magic I sat pathetically pushing the buttons to make the windows go up and down as if by some magic this would knock all the ice off (again didn’t work).

10 minutes later I was on the road and picked up a bounding and cheerful mother (if the jumper didn’t wake me up then she certainly would have) and we set off to her work. On the way we had to drive through a park, which was absolutely stunning in the low winter sunlight, frost all around. It sounds so daft to be so captivated but I genuinely missed all these sights for the last few years, due to old lungs despising cold weather (even though I have always loved it) and general poor health preventing much outdoor winter activity.

The last week or so has actually been really busy; I went to Birmingham to speak at a physiotherapy conference which was a great experience. I have a huge amount of respect for physios, because as health deteriorates they unwittingly become not only a physio but a source of comfort, support and council. I think it’s because whereas doctors and nurses are often only in the room for minutes, physiotherapy can take some time so you build up a very strong bond. I could not have got through a lot of my tough times without not only their physical support and symptomatic relief, but their help and guidance with my emotional wellbeing. Unfortunately I managed to have quite a few in tears again, but I can’t help it; I talk very openly about whatever is asked therefore some of it will be sad as certain episodes certainly were. I was lucky enough to meet a few physios who treat/have treated my friends (Robyn’s, Oli’s, Jess’s) which was lovely too.

Saturday I attended the Lord Mayors Parade on the Transplants in Mind bus. A really fun day, I was whooping and shrieking and cheering along with the crowds, as we handed out thousands of flags to people lining the streets. If just one person picks up the phone and registers after that then that’s potentially 9 lives saved…some pics of the day below. Stay warm!



Two really nice guys who had their transplants yeeears ago.