Monday, July 30, 2007

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

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

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

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

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

Thursday, July 26, 2007

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

Tuesday, July 24, 2007

Why you should sponsor Emily's Angels...

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

Thursday, July 19, 2007

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

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

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

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

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

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

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


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

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


What a difference a year makes...

Tuesday, July 17, 2007

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

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

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

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

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

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

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

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

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

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

Sunday, July 15, 2007

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

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

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



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

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

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

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

Friday, July 13, 2007

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

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

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

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

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

Sunday, July 08, 2007

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

Answer: This.


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

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

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

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

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

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

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


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


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

Thank you.



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

Thursday, July 05, 2007

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

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



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

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




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

Tuesday, July 03, 2007

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

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

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

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

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