Monday, July 21, 2008

Life is truly flying again, and I am loving it!

Last week myself, Oli and some rather fabulous LLTGL helpers held a talk at the Treasury in Whitehall. It was a fantastic event, organised by their disability committee. We scooted up to London, with me saying “I’ll be a lot calmer when we’re at the station/on the train/at Whitehall/in the main room" at various intervals, each statement proving to be an utter lie.

I spoke first, about LLTGL, Transplantation, the statistics and the fears of waiting, and then introduced our guest speaker C, who bravely agreed to come along to tell the assembled what it was like watching your father wait and hope for a new heart. The audience was silent as she explained beautifully that the wait for transplant is like a washing machine – most people would say rollercoaster but that implies ups then downs whereas with a washing machine you are pelted with all these emotions at once (trademarked by C, Oli and I shall now be begging to steal said description). As she reached the end of her talk, the emotion of it all surfaced and she broke down, and I moved up to the mic to finish her speech whilst giving her a gentle squeeze.

I cannot even begin to explain how much more of an impact it has coming from someone who is living the situation right here, right now and we cannot thank C enough for being bold enough to stand up there and pour out her heart to a visually moved audience. The whole afternoon was just fantastic and we will hopefully have several more events stemming from it so watch this space...

One thing down, one very exciting thing to go: Cabaret Favourites is a mere two days away and I am now officially petrified! We had a full rehearsal on Saturday and the amount of talent we have in this cast is just incredible. Wednesday should be a fantastic evening; I am starting to get really rather panicky about singing on stage myself (not a good start when encouraging others to do so!) I keep having this fear I am going to cough in the middle and then remembering my new lungs don’t tend to do that...we will hopefully have some pictures which I can post after the big day.

Things have been so busy that I keep forgetting that a week today I shall be sunning myself (well sitting nicely in the shade smeared in factor 50) in much sunnier parts! I am going on my first proper summer holiday...2 weeks in gorgeous Greece. We are returning to a place we often went to as a family when I was younger, so I cannot wait to go back. When I had my tension pneumothorax and they were trying to stabilise me enough to move me to the Brompton, I apparently asked my dad to talk about our little haunt in Greece and describe it to me to keep me calm. I am so lucky to be able to go back, and I can’t wait to see what it is like now, this time with precious new working lungs.

Monday, July 14, 2008

Thank you as always for your wonderful comments and emails which always a) help me with my perspective and b) are just so lovely to read.

I went to Harefield on Thursday to see what was going on. All in all the appointment went well. Oxygen saturations were 100% (as the nurse said, can't get much better than that!) Lung function fantastic (tiny drop but not big enough to be of any relevance) Blood pressure etc all normal, X-ray was described as "pristine" (woohoo!)

Of course I can't leave a hospital without something being a slight cause for concern and it appears the latest organs to need an ASBO are my kidneys. They have been messing around intermittently and so the docs looked at the general trend over the year, which is essentially showing a slow decrease in function.

This sounded rather alarming to me but my consultant was fab, explaining carefully that it isn't any reason to panic at the moment, but does require further investigation to try and ascertain just what is causing their decline. The number one suspect is Cyclosporin, one of my immunosuppressants. In fact they are 99.9% sure this is the culprit, but as Dr C said, the one time you assume that's the reason is the time that actually it's a more concealed cause.

So I have all sorts of fun tests booked for August (a day out for me and my kidneys if you will) to triple check everything else and check that the big bad bully is indeed my Cyclosporin.

Progression if it is the Cylco? We can switch me to a different immuno which I don’t really like the sound of as it’s much newer (thus less known about it) and my lungs have been so very good (not a mention of the R word in sight) and as they say if it ain’t broke don’t fix it...but then I might not have a choice.

Anyway as my sisters pointed out, nice of me to pick a different organ to muck around with for a little while. They always have had an amusing way of looking at things...

Monday, July 07, 2008

Firstly massive apologies for not updating on the blood test thing - Kidneys are doing ok, the 2nd blood test showed a slight improvement so they are not too worried, although I will be returning to good ol' Harefield probably on Thursday.

It has been a tough week as I have had to realise a few things.

* Recovery from the actual Transplant is not the end. There's a myriad of other little elements which still need TLC along the way which will spring up when you least expect them.

* Working full time is a bit too much right now.

It’s been very hard for me to accept both of those points and therefore I have made the last week a little tougher for myself than it probably needed to be. I’m not very good at giving in or being defeated, I’m not very good at letting people down, and even though if I stopped and looked at it with an outsiders perspective the only person I am a) giving in to and b) letting down is myself, it’s still very hard.

Still the upside is my lungs are rather fabulous. Whilst I remember, massive congratulations to my middling sister Lucy who recently learned that she is a 1st Class Honours student and will shortly be heading into the world of journalism if her talent is anything to go by.

And how could I finish my blog without a plug for my very own project...some of you may remember a show I produced in 2004 entitled Cabaret Favourites. I loved it (always happiest when immersed in music and drama) but felt a little sad watching as really I wanted to be up there myself. I participated in the final number (by waving my arms around vigorously) but as the lights went to blackout I remember bending over, hands on knees, gasping and trying to regain my breath.

This year I will be debuting my new lungs as my sister has convinced me to get up there and sing a duet with her. I am totally over excited but incredibly nervous. Plus of course there’s a whole host of extremely talented young performers ready to sing their hearts out and create a musical spectacular in aid of Live Life Then Give Life. Want to see it? Come along: 23rd July at 7.30pm, email emily (at) livelifethengivelife.co.uk for more info and/or to book tickets. YAY!

Wednesday, June 25, 2008

This weekend was unbelivably hectic but incredibly inspiring. On Saturday afternoon, I travelled up to Liverpool (worst journey in the whole world - Virgin didn't give me my ticket, said they would, then proceeded to try and make me buy a new one at every. single. change.) to stay with my old flatmate (she's not old, we were flatmates at uni. You know what I mean.) in preparation for a pretty big day on the Sunday.

The reason for this escapade was to support the Tighe family in their annual Ste Tighe tournament, in memory of their son who was killed in 2006, and who saved the lives of 5 people through the gift of life. The family are incredible, you can see their ITV interview here

The day was fantastic - dozens of 5-aside teams from all over Liverpool joined together in a huge tournament, to raise money for LLTGL. It was fantastically organised and I just can't get over how amazing the Tighe family is. They lost there son only 2 years ago, but they were genuinely touched that we had made the effort to come all the way up...I felt it was the least we could do.

Talking to donor families helps me better understand that little bit more about what goes on on the other side of it all. It's very hard to imagine unless you are in that position, but the more I learn, the more convinced I am that spreading the word and getting people to think about the option of organ donation helps everyone; just seeing the comfort the Tighes now get knowing people are walking around today because of their son reminds me that even that small bit of comfort the gift of life can bring to a donor family is extremely valuable.

I felt very humbled by everything I saw on Sunday. Sometimes tragedy brings out the best in people, and watching scores of people cheering Paula as she stood up to take the mic and thank everyone for their support brought a swell of happiness about human nature and just now great everyone can be. I also got to meet Holly, our rather lovely Advocate who is generally being a little shiny star in amongst hours and hours and hours of dialysis. I will put some piccies up when I get a chance.

This post is sounding rather hippy and hug-a-tree but nevermind. I am happy, inspired and motivated. Off for bloods later this morning, won't get the results for a while I shouldn't think but I shall keep everyone posted.

Friday, June 20, 2008

The other night I was working a bit later than usual and decided to run for the last train. I learned several things from this experience.

1) My lungs are good when I run (yay!)
2) My legs are not.
3) One should not wear ballet pumps when running
4) ballet pumps with big bows on are even sillier.
5) My diaphragm was not good at all.

Well actually, whilst I was running I was fine, I ran, got my train and collapsed on it in a grinning sweaty heap, however later on, my diaphragm decided to demonstrate its lack of appreciation and get very grumpy and painful. This was quite strange, predominantly because as I understood it, my diaphragm is paralysed, so surely it wouldn't be affected during over exertion...? (any medic types feel free to educate me on this). The other bizarre thing was the type of pain bought old memories flooding back. It was a very similar pain to the stuff I had at the beginning of various lung collapses, and it really freaked me out. I don't quite understand why it freaked me out so much though as I knew this wasn't the same. I am fully aware I have new lungs (even I am not that blonde) and that they are much better behaved than their predecessors, but I couldn't shake the fear, and went to bed a bit of a nervous wreck. Needless to say all is fine, but it's funny how a sensation can bring back such strong memories, physically as well as mentally.

Continuing on the topic of health (ooh haven't discussed health stuff for a while!) Harefield rang. Several times in fact (I'm not v easy to get hold of as I listen to messages then, er, forget to reply) and apparently my kidney function isn't looking as great as it could be. As with all new areas post-transplant it's always a tad nervewracking to hear something isn't quite right, but hopefully it was a dud result or it just needs some medication tweaking or something. Either way, I'm off for more bloods next week to get it checked thoroughly. Come on little kidneys, cheer each other on, get each other hyped up into over-enthusiasm mode.

Other life stuff? Peachy thanks. Yay!

Saturday, June 07, 2008

I can't believe I haven't posted in almost a month! That is pretty shocking. I tend to post of course when there's something to post about; I wouldn't want to write for the sake of it.

It occurred to me the other day, I have an awful lot of material I have written for a book (some of it from this blog) which I am currently doing nothing with so I might post a few bits of that...

My youngest sister turned 18 at the beginning of the week. Thanks to me being rather poorly she grew up a little quicker than perhaps she should, but it still feels weird that she is now a real grown-up (well as grown-up as turning 18 actually makes you.)

Work is going well; I think I am still struggling to adjust to the fact that I'm not immediately perfect at this. Thinking about it logically I think it's because I haven't challenged myself properly since Uni. When I was ill I always ensured I kept myself busy but of course they were doing things I was naturally good at (talking about myself) so it came easily. I got told at work the other day "you are the smiliest person I've ever seen!" which I took as a huge compliment! It reminded me of one of my old favourite quotes: "Of all the things you wear, your expression is the most important" which I used to remember whenever I felt down about looking so poorly. Anyway I can't help smiling. It's genetic.

The Breathing Life Awards were held last Thursday and looked amazing from the clips I have seen on the net (which can be seen here). It's a very glitzy night organised by the CF Trust to recognise people with CF's achievements; everything from getting through the toughest times to academic and sporting achievement. The emotion there on the night is incredible; I was lucky enough to win an award in 2005 and it really was a night to remember, so massive congrats to everyone who went and was nominated this year.

I hope everyone else is out and about living and enjoying life, and making the most of this weekend's beautiful weather so far this weekend! Long may it last...

Wednesday, May 14, 2008

I knew I did the right thing blogging about my mental block re homeworking; thank you all so much for your comments and emails and so many of you raised points I must admit I didn’t consider (like the trust element). I will most definitely look upon this as a positive progression and am now in a much more sensible mindset about it all. So thank you.

I did another talk on Monday evening, this time to some local Guiders. I really enjoy doing my talks and try to do them as often as possible (I think it’s just word of mouth really, I’ve never really advertised them as such) but of course they tend to be evening ones now I am working (I love saying that, although I did call myself a working girl quite proudly in public the other day then realised it is another name for a prostitute. Oops).

Anyway it went really well. I have a sort of format which I vaguely stick to but I adapt it depending on the amount of people, their background (eg: medical) and how long they want me to witter on for. I love doing those talks as I feel like I am actively doing something to help those waiting, but I do try not to smooth over any of the sad and upsetting bits as I feel people need to understand just why organ donation is such an acutely important topic. A was so fed up of helping me lug broken cardboard boxes around he has provided me with a large black suitcase on wheels for all my bits and bobs; infinitely easier to manoeuvre from talk to talk and so much more professional looking! The next one I am doing is mid June in Kingston, and is actually an open one so do contact me if you want to come along.

This afternoon was sad as I joined hundreds (literally) of other people to say goodbye to Sam. It was a beautiful service, the most heartbreaking bit listening to her group of close friends stand up and sharing through their tears their memories about Sam and what she meant to them. It’s so frustratingly hard watching; it didn’t have to be like this and I think on this side of the looking glass I feel it even more, just how wrong and unnecessary a loss like Sam’s is. I know how different it could have been, and the fact I am lucky enough to still be here...I don’t know I think it just makes it even more nonsensical. I felt so privileged listening to those who knew Sam best telling everyone all about her, and totally inspired by the bravery of her family and friends. I am thinking of them all tonight.

This evening however will be a happy one, as it is a year since A proposed, so we are going out to celebrate the year that has been amazing in every single way. I cannot believe how far we have come both together and as individuals in the space of 12 months. It has been an incredible journey so far and I am absolutely having the time of my life.

Sunday, May 11, 2008

So I am now almost three months into my new job. 3 months! I can’t believe how quickly the time has flown...

I am still loving it there, there is so much to learn and it is quite fast-paced but that’s what I love I think, the new challenge and the opportunity to learn again and try and develop new skills.

Last week I finally agreed to start working 1 day a week from home. It was mentioned from the minute I joined, but I was determined to do a full week onsite, just like anyone else does. I wanted to do this for the first three months as in my head this was the time I really have to prove that I am worth employing (well I have to do that all the time but you know what I mean).

With recent things such as the arthritis diagnosis (thank you so much for everyone who has got in touch and/or posted info about this; it’s so helpful just to know other people have experienced it and are doing fine with it. I am fine too atm, so feeling good about the whole thing and the fact it shouldn’t interfere with day to day too much) it has started to make more sense to at least be set up for the option of homeworking, so if I can’t get into the office for whatever reason, it does not stop me from doing my job. And of course should the flu season/a stomach bug hit then I shouldn’t be on the train/in the office anyway….

So yes there are a million good reasons for me to be set up as a homeworker in case, and if I am I might as well do one day a week at home just to give myself back those few hours spent travelling. So why do I feel like a failure?

It is most definitely all in my head. My team are fantastic and have reminded me you don’t work any less hard when working from home! And of course it’s only one day a week. But I just feel…I don’t know, like I should be there, present in the office, every day for the full week.

As long-time readers of my blog will know, I am not particularly good at caving when I think something is a sign of me relenting to my health. I think this becomes even harder in a way post-transplant, as I am so much better than I was, I feel anything should be achievable. Mind you it’s not to say I couldn’t do a full commuting week, it’s just is 1 day less the better option for me? It probably is.

I’ve always been terrible at the thought of missing out on things too. I used to hate going in to hospital when I was at school, predominantly at the thought of life carrying on behind my back when I wasn’t there. Perhaps this is reminiscent of that…?

I am fully aware this blog makes no sense. I think I just needed to get it out of my system so I can move forward and accept the fact it’s not because I’m different or weaker than anyone else, it’s merely that that will suit my personal circumstances better and enable me to stay well and fulfil my role. Now I just need to believe that...

First BBQ of the year for my family yesterday! You aren’t supposed to have barbecued food post transplant so I always take mine off of the BBQ and head straight to the kitchen to nuke it in the microwave until it is rather small and sizzling. It means I get to enjoy the BBQ taste like everyone else but just in the safest way possible. I am totally overexcited about summer this year as let’s face it, last years was a bit of a no-show. And now it’s beginning to show, I am starting to get excited about my longest holiday since 2003 (2 weeks baby!!) which will be at the end of July…bring it on!

Oh and final point - LLTGL sent out it's first ever newsletter yesterday! Very exciting (well for me anyway!) If you aren't on our mailer but would like to be, please just contact us through the website (or email me) and we will get you on there. Yay!

Saturday, May 03, 2008

I woke up very early on Friday morning. When I say very early I mean I had only gone to bed a few hours before and should have been sound asleep. The culprit was my hands, which were feeling rather odd and throbbing a bit, as well as feeling....well, clownish, which isn't as amusing as the description suggests. Just almost numbish, achy and awkward.

Being a mature grown-up independent woman I promptly woke A up to tell him (as clearly he needed to know at 3.20am that my hands felt a bit funny.) We couldn’t see anything visibly wrong and I eventually got back to sleep.

When I got up for work I jumped out of bed (am still in the process of loving my job) and yelped in pain as I put my weight on my right foot. It felt like I had sprained it, thoug I was fairly convinced that unless A booted me out of the bed as penance for my earlier disturbance, I couldn’t have physically done anything to it.

As I attempted to get ready for work I quickly realised this wasn’t going to happen. I was lolloping along like a doll that’s lost the stuffing out of one leg and couldn’t grasp things as my hands were too sore. A tad worried by this stage I decided to retire to bed and phone Harefield. The on-call wasn’t sure it was related to transplant but couldn’t rule anything out either so suggested I ring in again when the transplant nurses are on duty.

I am not very good at having health stuff going on and not understanding what it is (you can imagine what a joy this made me to treat post transplant can’t you) so got straight online to talk to any other CFers/post transplant people who might have had a similar experience.

I hobbled to the GPs to get a blood test on Harefield’s recommendation and the GP confirmed what a friend of mine I had spoken to online had suggested it might be; “I suspect it’s CF related arthritis”.

I was not amused. I don’t know much about this element of Cystic Fibrosis and anything you don’t know about is instantly scarier. From what I understand, there is no exact diagnosis for arthritis, it’s just if you show symptoms for some time I guess you have it. Today things seem much better, fingers still a bit sore and stiff, and I am a tad limpy still, but definitely better. I shall wait and see what happens, and try not to panic about silly things such as “oh god, how am I going to do the adidas challenge then?!” when we have no idea whether this actually is, or even if it is how it will behave. For all I know it will fade away and this will be the only flare-up I ever have. Or it might be totally controlable....we will wait and see.

On a much more sombre note, the CF community was all very saddened yesterday as we lost Samantha, known to most as Princess Sam. I had known her for some time, in fact she had wandered to my room when I was incarcerated with my old lungs, a chest drain in situ, to offer to order some pizza on my behalf as I was unable to move.

Sam’s health deteriorated and she spent the last 6 months pretty much living in hospital. During this time she held her head up, kept on going, and even did an interview with Cosmopolitan magazine to raise money for the ward she was stuck on at the Brompton (said interview will be in June’s edition and which she told her mum she still wants to go ahead...even though she will not get to see it.)



If you get a minute, please do have a read of Sam’s blog. It’s incredibly open and honest, and frank just tells it like it is really. She was a wonderful girl with a huge heart and will be very very sorely missed. Her family and her friends are in my thoughts right now, and I just wish so very much (and get cross thinking about it) that she had received the transplant she so desperately needed and so richly deserved. As Oli points out on his blog, it makes absolutely no sense why some of us are saved and others die, all we can do is use this sadness to fuel the fight to raise more awareness. Job for today if you are reading folks, please show people this beautiful girl who lost her battle yesterday and tell them to get online and sign up to the organ donor register.

Thank you

Monday, April 28, 2008

First of all, fantastical (a word? it is now...) news:

My friend Jac got her transplant on Friday! A very modest and quiet lady, Jac has been an absolute source of strength for me for years, talking me through my most insane moments in her calm and rational manner. Am totally and utterly delighted for her and her family. If you haven't read her blog before I do recommend you go and give it a read.

This weekend A and I went "oop North" to Derbyshire, to visit my Grandad. He is now a grand 92 years old and rather fantastic. Derbyshire is a gorgeous place, one that holds many fond memories from childhood. It's amusing how rose-tinted your memories get, as I am sure I would complain bitterly at being dragged out on walks along the Edges, however now I look back on these walks with an adult (well fairly) eye and see them for the beautiful pleasures they are.

Emmie stumbled upon a rather ingenious idea for raising funds for LLTGL, that is the Great British Duck Race. If you hadn't heard of this before don't worry, neither had I, but it sounds like a rather awesome day and even more excitingly we have entered Live Life as one of the sponsorable (more made up words) charities, so by clicking here you can not only adopt a duck to take part in this race, but raise funds for LLTGL whilst doing so. Woohoo!

A final random note: to the nice man who when the heavens opened as the commuters got off of the train this evening, paused to allow me to hide under his umbrella from the torrents which had already soaked me, thank you; my inappropriate shoes are remarkably dry and unbattered considering. To the other five people holding umbrellas that had already walked past however...I toss my damp hair in your general direction.

Wednesday, April 23, 2008

I know I know, I am a terrible person who is ridiculously behind on her blogging and I vow not to let this lapse happen again!

I had to have the day off of work the other week as I had exhausted myself. Now before anyone gets too worried about work being the cause, I am thinking running from place to place (Leeds > Germany > London > Newcastle > London) and not stopping for 16 days on the trot was probably the cause…

So anyway, work (being great) insisted I take the day off, so for the first time in ages, I lay in bed as if I was “poorly” and tried to rest.

And I hated it. As I lay there, flicking from channel to channel trying to find something which wouldn’t slowly kill off my brain cells one by one, I had a very sharp and vivid flashback to when I was ill and this was all I could do, and it panicked me. The feeling of being home and in bed whilst everyone else is at work now for me merely holds bad memories. As A said, I am going to have to get used to enjoying days off again!

Last weekend, A and I decided to do a massive spring clean and essentially remove as much of 3 years worth of contents that we possibly could. In the past, due to my naughty behaviour, the only ever time A got the chance to do big throw-outs is when I was away in hospital (safe from any dust and cleaning product fumes that might emerge) but we had never, both of us, really gone over the whole house.

Having never done a full spring-clean before, what I didn’t expect was the emotional side of it all. Hidden away in cupboards, buried under various documents and letters, emerged traces from my past. A letter I had written to a friend, chatting excitedly about finding “our new house” which never got sent as I had a rather large pneumo the day after which kept me out of action for some time, cards from when I was in and out of the Brompton like a ping-pong ball (how people kept up the patience to time and again write to me I have no idea but I am very grateful), a letter from a beautiful young lady with CF who is sadly no longer with us as her transplant never came, lung function reports which at the time I was pleased with as they’d gone up 2% but I look now and cannot believe the difference. Bitter-sweet memories which are tugged to the forefront of your mind by triggers like a card or a gift, which is one of the reasons I am such an atrocious hoarder; things hold so much significance to me and to various episodes in my life.

I have also signed up (third year running!) to do the hydro active, which now appears to be called the Adidas challenge but which shall always remain hydro active to me. People are already joining the Angels so please do hurry and sign up if you want to help us raise money for the CF Trust. I am looking forward to getting training and hopefully my ankles will be significantly thinner than last year...

Wednesday, April 09, 2008

A while ago the CF Trust asked to give a presentation to BOC (British oxygen company) and didn't think too much of it, however as it loomed nearer it suddenly appeared that I would be speaking in front of the key representatives for 20 BOC related oxygen groups worldwide. Slightly more nerve-wracking than I thought then.

However the day itself went really well. Firstly I must point out this was the company that supplied my chemist with Cylinders, when Oxygen supplies were good. The changeover (a result of privatisation) was to a different company entirely, although I obviously aired my grievances to ensure that everyone present would be acutely aware that this mustn't happen to them.

I had to speak for an hour, so I chose to educate about Cystic Fibrosis as much as possible, so included a great amount of detail about CF and about life living with it. It was pretty similar in many ways to other talks I have done, but with a lot more focus on oxygen. Obviously.

I was overjoyed to be given the chance to talk to BOC. I think young people using oxygen is a greatly neglected area, and this belief is supported from the very first booklet presented to me when I initially received my oxygen concentrator. There was a nice smiley woman, glamorous looking, but definitely in her 60s, sitting in her armchair smiling wearing her nasal specs with the concentrator behind her. The majority of advice, expectation of needs and service is angled towards older (predominately COPD) patients, which is quite understandable seeing as they make up a vast majority of the customers. However us young folk - not only pwcf but those with lung diseases like Rachel and Nattie have who I have talked about before – we are a significant group too and we have very different needs.

Living as a 20-something on oxygen, you want to go out, you want to carry on living, go to restaurants, out with friends, perhaps even clubbing (only did it once but damn glad I did). I wanted to talk about the psychological issues but wanted to do something which would make the assembled understand a little better what it is like going out for the first time wearing nasal specs. So as I broached this subject, I presented each person with luminous thin strips of post-it notes which they were instructed to stick to their face. An amusing site, but a serious reason behind it; the acute knowledge that there is something on your face which shouldn’t be there but that everyone can see…that’s what I needed them to feel .When I told them all they could remove them several of them actually kept them on, which I saw as a gesture of support and empathy, and I was touched by it. Either that or they liked the luminous colour against their skin...

I met some great people and I hope that I gave them a good idea about what living with (not just living on, but living with) oxygen is like. Whilst I am free of the constraints of 24 hour O2, so many people, old and young, require it 24 hours a day, and for these people it is absolutely vital that they have a good quality service run by supportive and empathetic people who understand their customers’ needs.

Wednesday, April 02, 2008

I will write a longer entry soon (honest) but whilst I am rushed off my feet, here is the article recently published by a national newswire.

Hurrah!

Ps - health fab, hence mad running-aroundness. I was in a bit of a car-smash on monday but am fine (car however is not).

DONOR CAMPAIGNERS CELEBRATE CHARITY STATUS

Two inspirational young women were celebrating today after their campaign to highlight the chronic shortage of organ donors was given charitable status.

Emily Thackray, 24, from Ewell, Surrey, and Emma Harris, 33, from Pewsey, Wiltshire, both have cystic fibrosis (CF), the UK's most common life-threatening genetic disease which affects various organs of the body, in particular the lungs and the digestive system.

The average life expectancy of a CF sufferer in the UK is just 31 years old, with the majority of deaths caused by progressive lung damage.

In 2005, Emily joined thousands of other people in the UK on the transplant waiting list.

But faced with a 50% chance of dying while waiting for a transplant due to the lack of donors, she and Emma decided to take matters into their own hands and launched the Live Life then Give Life campaign in 2006.

Since then Emily has received a life-saving double lung transplant and the campaign has grown beyond all expectations with high-profile support from celebrities including Richard and Judy, Kerry Katona, Bill Bailey and John Terry.

The pair have now taken on four other young people - all of whom have been personally affected by the shortage of donors - to help run the new charity.

Emily said: "I am only alive today because someone out there not only made the decision to donate, but then took the time to sign up to the organ donor register. I remember my donor with every breath I take and have accomplished a million and one things I never thought I'd be able to do.

"The fact that we have been given charitable status means more to me than I can explain; we have always had the passion, the drive and the motivation to change the current state of organ donation in the UK, and now we have the means."

end

Friday, March 28, 2008

Live Life Then Give Life.

Registered Charity number 1123333.

What can I say but...

YAY!

Tuesday, March 25, 2008

My birthday was excellent and I was totally and utterly spoilt as usual. A and my mother decided that this year I should blow out all 24 candles in one go, which I duly did and was rather chuffed with myself.

Since my last post I have been to two exotic locations; France and Sheffield (one arguably more exotic than the other)

Sheffield was for work and involved me travelling up there on my own and staying in a hotel on my own. Now for a 24 year old (woohoo!) that's not really a big ask, but I still find these moments of assumed independence oddly unnerving. There’s absolutely no reason why I wouldn’t be fine doing this, but I suppose when you’ve been so heavily reliant on others and so used to people being with you for everything, “firsts” are always a tad unsettling.

As it turns out, I loved it. It was great to be in the hotel by myself, and a fantastic confidence booster when you face something you’re unsure you can do (had fantastic visions of me ending up in Aberdeen or somewhere).

Whilst in Sheffield I had the privilege of meeting Nattie’s mum. Having been “working” with rather poorly people for a while now, it takes quite a bit to shake me the way Nattie’s story has. She is close friends with Rachel, another completely awe-inspiring young lady. These two are not even 21 and have faced more than most of us will face in a lifetime already and are still smiling. Please pay their page a visit; every time I do it inspires me.

Then to France over Easter; 3 days of eating, drinking, taking in the sights, eating a bit more…a fantastic break. Back to work today (which I am still loving) and so life continues to move at a rapid but exciting pace. Oh and last of all watch this space for some exciting Live Life Then Give Life news coming soon…

Monday, March 17, 2008

I was discharged from Harefield exactly one year ago yesterday.

I still cannot quite believe how far I've come. I remember so vividly feeling nervous, shaking like a leaf (the medication doses combined with my muscle wastage caused this) my speech was slow and hesitant (something which I think anyone who has spoken to me recently would agree is no longer a problem) and I was scared; scared of what lay ahead, of the unknown. It was an exciting but terrifying moment, leaving those winding safe grey and blue corridors, leaving a room which consisted of a bed, a chair and a timetable of daily monotony.

I knew what was coming each day and when and why, but more importantly I didn’t really have to know, as there was always someone there of the medical profession to double check everything anyway. Becoming institutionalised is, in my opinion, a well-established phenomenon. Desire for your freedom begins to give way to fear of it, and dislike of your restrictions is disolved by comfortable routine.

I needn’t have feared; life at home was more wonderful than I could have imagined, and what the psychologist had said was true; you don’t need to worry that you have lost your “place”, your role as the sick one, as your new role will quickly flourish and grow and feel normal faster than you think.

Life since 16th March 2007 has moved at such speed that I feel like I’ve been flying. I have packed as much as I possibly can in every single day, firstly as I just want to grasp each and every opportunity with both hands but also I think to some extent because I still find it hard to let go of that slight underlying fear that this magic carpet might be whisked away…I don’t want to waste it whilst it’s here.

This has been a monumental year, and I’ve done a million and one things I never dreamed I ever would or could. To round off a year out of hospital in style, it is my birthday tomorrow. Amusingly a year ago having been firmly instructed “have a nice quiet weekend, not too many people, not too much going on” my mother threw a party for 100 people in a slight (and possibly inherited) fit of over excitement.

This year will be much more serene (am a working grownupperson) but equally as special. I say it all the time and I imagine it’s becoming so very boring to read but there are no other words; I am such a lucky lucky girl.

Friday, March 14, 2008

I get everywhere I do....!

Glad to see Alice is doing so well, pop along to her blog and say hi if you can as she only recently got her new lungs.

Monday, March 10, 2008

Today was a little strange.

I woke up at 2.30 am with a splitting headache and didn't really get back to sleep after that. Then got up and staggered around getting ready to go to hospital, not quite considering it might not be such a good idea to jump in the car feeling so rough. After an hour sitting in traffic I pulled over and was, erm, a tad sick.

Having clearly lost my sanity along with my breakfast I continued driving (not advised) and managed to get to harefield in one piece. My lovely friend who had the joyous pleasure of living with me for 3 years at uni met me there and looked after me whilst I dozed on a bed in a sideroom. Goodness knows what was going on with my body this morning but it wasn't pleasant.

The good news however is that my lung function is way up! And after my blood results and Xray all came back clear I was allowed to go home, as my consultant wisely pointed out just because you are post transplant doesn't make you immune to picking up the odd nasty which everyone else is just as susceptible to as you.

So to summarise: everything is fine. Taking it easy tonight. Lung function is fab. so hurrah for that!

Tuesday, March 04, 2008

Harefield update as promised:

I am a tad put out. I always had this complex before my transplant that I shouldn't start thinking I was onto a winning streak as inevitably my body would step in and throw a spanner in the works (interesting mix of images there).

A year of playing it safe and my lung function has been impeccably behaved. Then I start my first ever full time job….and my lung function dips for the first ever time post transplant.

Now I know it’s not the job. How do I know? I just do. I am suspecting it has rather more to do with a certain head cold which had me snuffling all last week. But seeing as my immunosuppressant levels have also dipped a bit, I have had a change of medication doses which means….I have to go back up there on Monday morning.

If there is no improvement, then the dreaded “R” word is immediately investigated and I will need a bronchoscopy. I was less than amused when heading back out into the hospital grounds and may or may not have been sporting the face of a five year old whose ice-cream has fallen out of its cone and onto the floor.

As has happened to me before when I’ve been feeling sorry for myself, perspective introduced itself with a gentle nudge, this time by the way of a gentleman who hesitantly asked if my name was Emily. When I replied in the affirmative, he grasped my hand and informed me he was John’s father.

I had the privilege of meeting John when I was in for my last bronchoscopy. Really lovely guy, warm smile, friendly and emailed me at a later date to say thanks for popping my head round the door and we emailed back and forth a bit.

His father was gentle, dignified and kind, and informed me that I make more of a difference than I’ll ever know. How someone can have the inclination to tell someone something so warm like that at such a time is beyond me. I hope if John’s father reads this he will know what a lot that meant to me, and how I was merely humbled by his kind words.

So all of the above considered, I am absolutely fine. I need another little check up next week, but am working away merrily all this week and still loving it. If an additional appointment and some further tests is all that’s required at present I’m in a rather peachy position and intent to remember that this week.

Thursday, February 28, 2008

*dons apologetic cap*

Dear blog readers,

You can assume several things from the lack of blogging recently. Namely:

1)Health is good

2)I love my new job. Love it love it love it.

3)I am very very busy at said new job.

3)I have learnt so much already my brain is bursting with information which is making me a tad more dappy and forgetful than normal (yes that is possible).

4)It is a bit of a shock to the system working full days and I am subsequently exhausted (but in a wonderful "just need to sleep but ooh can still breathe so well" way)

5)I am sleeping quite a lot.

6)Blogging services will resume shortly, thank you for your patience.

7)Did I mention that I love my new job?

I feel so priviledged to be able to work....I know that sounds rediculous but it's true. I have always had quite a lot of energy and now I can challenge it.

Harefield appt on monday, will update after that, honest....

Monday, February 18, 2008

What a difference a year makes....

Monday of Half term - February 2007.

I am lying in bed in intensive care. i still have the ventilator attached via a tracheostomy. I cannot eat, cannot talk, cannot move unaided. I am in the middle of a vicious cycle of panic attacks (which will very shortly be greatly relieved by appointments with a psychologist but I do not know that yet). A close friend of mine brings my sister up to the hospital to visit, and they try to calm me down and make me comfortable, mopping my forehead and squeezing my hand. I am finding it very hard at this point to see that I will ever resemble my normal self again, that I will ever even leave the bed unaided let alone walk out of the room.

Monday of Half term - February 2008.

I am striding down the road towards the office, my first full day as a PR Executive. It's icey cold, wind whistling and smacking against my cheeks, I am grinning from ear to ear, teeth chattering in the cold. I can feel the sun on my back and the sky is a vivid blue. I am an independant, fully functioning, walking, talking eating, breathing woman doing everything a woman of my age should and could be able to.

It's good to be alive.

Thursday, February 14, 2008

Exciting news time!!

(and no, for those of you which are scarily large in number with this guess no I am not pregnant...)

I have got my first ever real proper full-time job. As of Monday I am officially...a PR executive. YAY!!

It all started when I was talking to a friend of mine who has CF. She is so determined and dedicated that after completing 8 gruelling years of study she has opened her on clinic as a qualified osteopath. Since the inspiration was from her I'm going to plug her website which you can visit here. Hearing her talk about the work she was passionate about made something click in me. Since January I have been pretty nervous about thinking about the whole work issue, it's a scary minefield of a path littered with questions - what if I'm no good? What if I can't cope physically? What if the benefits people take away my benefits before I am financially secure? (wouldn't put it past them, I had to fight tooth and nail to proove myself ill enough to get incapacity benefit in spite of having been given 12 months to live already).

But I decided that I just needed to get up and to try. It's scary thinking you might fail but surely the biggest failure is never to have tried in the first place.

So I emailed a friend who works in PR to see if I could shadow her. She in turn got me a work experience placement with this company who liked me so much I was lucky enough to be offered a job.

I don't think it's really quite sunk in yet. I am totally over excited. I love PR, I've been doing it in my own special way over the past few years for Live Life Then Give Life but always wanted to persue it professionally, learn a bit more about the field I floundered around in. And now I have this amazing opportunity I am overjoyed to be able to leap up and grasp it.

Big, scary working grown-up world, look out: here comes something pink and sparkley and she's flying right at you....

Saturday, February 09, 2008

It's been a very busy week. It has also been a totally head-spinning life-changing week and I have some quite exciting news....but I'm going to be mean and not blog about it till it's all signed sealed and delivered.

Thank you for all the fascinating input on my last post, both on here and emailed to me privately. I get a great deal from reading others' opinions and feelings, so thank you for contributing.

For a number of reasons, this campaign has been brought to my attention. As you know from this blog I love reminiscing so was eager to join in, however when I clicked on the page box to enter my memory I suddenly realised I couldn't narrow it down.

What is my favourite childhood memory?

Playing games with my sisters? (predominantly involving the stairs being a mountain and us owning an (invisible) pet goat)
Playing in the park?
A specific holiday with my family?
A birthday, christmas or celebration?

What I actually went for in the end was a vivid memory which comes back to me every November....of standing around a bonfire watching the flames leap and crackle, wind whilstling around me and feeling the heat on my face, holding onto an adults hand. I relished in the fact that everyone would congregate together, huddling in the cold to watch. I loved bonfire night (still do, in fact one of my first posts on this blog was about fireworks). Clearly the pink and sparkly attraction is there, but there's also just something rather exciting about being outdoors in the cold with the warmth on your face from a roaring crackling fire.

Interestingly, every memory I treasure most has something to do with people, and hardly any were of presents or other material things. Some of the happiest moments of my life have been the simplest; laughing till my sides hurt with my sisters or a friend, snuggling up on the sofa with the fire on with A, things like that.

Anyway, more participation please; what's your favourite childhood memory? I think I'm just getting lazy and want to read everyone elses thoughts...


Monday, February 04, 2008

I’ve been thinking a lot about religion today.

Various things have triggered it – there’s lots of talk about it on various (strong believers’) blogs talking about how their faith has got them through etc.

I am not religious. At all. As I think most people know. Not that I have anything against people being religious obviously, in fact I was at one point in my young teens a church server. I agreed to do it and ended up getting myself to and from the church on a Sunday (not being from a religious family). Thinking back to it I don’t think I got much out of it, not in the spiritual sense. But I liked the people and I liked helping out, and I did join in the prayers although never prayed of my own accord (unless I was really very scared).

Of course then like any well-balanced teen I swung from being involved in church duties to “there’s definitely nothing out there I know it for sure as why would such horrible things happen”. This was triggered predominantly by the death of a young friend of mine. And when I say young I mean young; he was just nine years old.
I like to think that by now, in my old age (ha) I have developed a slightly more balanced perspective on it. I am most definitely not religious, but I would no longer vehemently argue against people that there isn’t anything out there, for two reasons. Firstly I don’t consider myself to be knowledgeable enough (the world’s a pretty big place, let alone the universe) and secondly, I now realise there is no positive by trying to convince someone that their belief system is false. After all, I had belief systems that got me through my wait for transplant, it just so happens that they weren’t anything to do with God.

I had faith in people, and I blogged about it all on here. I have faith in people wanting to give, people wanting to help (not everyone I’m not that naive) but that someone would choose to do so and it would in turn help me. I had faith in the doctor’s care for me, and my family’s love for me. And it was things like that that got me through. So rocking someone else’s belief foundations can’t really be that helpful.

One of the things that has really got me thinking about what faith does to us is this blog here. I managed to get myself to have a look (I haven’t been able to as I find it hard as I will explain) and I am thrilled to say both mum and baby seem to be doing well at the moment. I urge you to pop on and send good wishes if you can.

The thing is, all of their decisions were made, not according to the doctors, not according to what’s best for each other or what would have the most likely good outcome, not even what they both desired most of all, it was made because they felt it was God’s will. Actually rereading that I suppose that is what they both desired most of all. I hesitated on talking about this incidentally as I by no means want to offend anyone but when I did look at Nate’s blog he seems to be very level headed and able to explain his feelings and beliefs well so hopefully if he reads this he will understand I am just thinking out loud rather than making disparaging remarks.

There is never a right path, but if it was me, in my head there was the clear safe option and for me it would have been a different choice. Perhaps that’s because I pondered on worst case scenario more (loss of both lives) and the possibility of having a child post transplant, but of course then we go into the topic of abortion and that’s really another blog. Point being doctors’ advice a lung function of no lower than 60% to have a child and so this cannot have been medically advisable. But then that must be where faith comes in. I have faith that I should listen to the doctors and listen to my heart (I’m quite strict on myself and decided at 16 when my lung function crossed the 60% boundary that I wouldn’t have children pre transplant as I wouldn’t be able to be the mother I wanted to be and the mother I felt they deserved) and they believe in God.

As I say it’s not a personal attack – if you read Nate’s blog they seem like a really lovely couple, and clearly have a massive support network of family which is fantastic. I am just talking to myself really to try to understand better, as I just can’t no matter how hard I try.

There was a philosopher called Descartes. Most people recognise him from his most famous quote “I think therefore I am”. He wrote some fantastic philosophies but unfortunately they had one key flaw; because he believed in god, the answer had to be that God was the cause and the root, they rhyme and the reason, which in turn made his philosophies convoluted and he ended up contradicting and confusing them more than once, and his arguments, which started off on solid focused tracks seemed to deviate and loop to ensure they came back to the answer he needed to find.

The one thing I know I will never get my head round is the belief that some religious people hold that your life cannot be good without a divine presence in it. That makes me a bit annoyed really but I think only because I have such a strong belief (ah even I am using that word) that you are the maker of your own destiny. Perhaps it’s because it makes me feel like I have control even at times when I don’t? If any of you have read Satre (Existentialism is a Humanism) you may know a bit more what I’m talking about. I don’t accept everything he says but I do agree with a lot of it.

I don’t think its depressing thinking you are the only one who can make life what it is – I think it’s liberating. Perhaps that’s why that’s the belief I choose to hold, after all I am a self-confessed control freak. I think personally if I felt I had undergone what I had as I was being punished for previous sin (as one Christian friend once told me) I’d go mad. Perhaps I need to not believe equally as much (and maybe even for the same reasons) as they need to believe.

This is a really really long waffle. I have been sitting here for about 20 minutes deciding whether to post it or whether it’s too risqué, but I think I’m just going to post it and see what happens. Chat away on the subject if you want (the world would be a boring place if everyone agreed with each other) but please be nice to me...and each other.

Friday, February 01, 2008

I have had the most exciting couple of days ever. A friend managed to secure me some work experience with a rather good PR company in London and amazingly they said they’d love to have me come and give it a go!

Everyone there is so lovely, they’ve all been extremely welcoming and eager to show me how things work, what to do etc. It is absolutely shattering and I am crawling home by the time I leave but I’m loving every second and soaking up anything and everything they’ll throw at me like a thirsty sponge.

Very short entry tonight (self explanatory from above) but I do need to tell everyone that I may or may not have taken my mobile for a swim in the bath this evening. Consequently when I switch it on it merely flashes brightly at me, whining whilst doing so. So that is why I am ignoring calls/texts – I will also have lost all my numbers (most were on the phone memory) so please drop me an email with yours if I should have it.

In fact I have had a disastrous evening, where I have also left a pan on the hob till I realised the room was getting rather hazy and rescued a smoking blackened mess (first ever time I’ve done that believe it or not) and dropped a jar of honey on a wine glass smashing both.

I think that it’s fair to blame all this on A as he is away for work and clearly I am not old/responsible enough to be left to my own devices.

Oh and I should be in the Times tomorrow. Don’t say I didn’t warn you!

Friday, January 25, 2008

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.

Thursday, January 17, 2008

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...

Monday, January 14, 2008

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.

Wednesday, January 09, 2008

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!

Sunday, January 06, 2008

4th January 2008. More to follow soon.

Thursday, January 03, 2008

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.

Saturday, December 29, 2007

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.

Friday, December 21, 2007

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!

Thursday, December 20, 2007

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!

Tuesday, December 18, 2007

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.

Thursday, December 13, 2007


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.

Thursday, December 06, 2007


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.

Monday, December 03, 2007

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.