Wednesday, December 17, 2008

Another manic but fantastic week this week.

In my job, getting the pupils to perform in concerts is quite a bit part of it. And what time of year guarantees a concert or seven? Christmas. So this week is rather hectic however I am loving it and so far all pupils have made me uber-proud.

We also launched our annual LLTGL Christmas Media Campaign yesterday which has hit the ground running and so I am being kept rather busy with that when not rehearing/performing. I am amazed every year at all the fantastic people who volunteer to talk about their own stories, some of them extremely difficult and sad, just to try and help others understand what it is like at this time of year, to be affected by Transplant or Organ Donation.

We've had a brilliant response so far, and I'm very much hoping it continues. I have said it so many times but you cannot underestimate the power of seeing a real life story in the Media. Watching or reading about the human side of things touches people in a way facts and figures cannot. We are indebted to the fab LLTGL volunteers who time and time again come up trumps.

And finally and most excitingly of all, we have a gorgeous sparkly Christmas tree up in our lounge so now it properly feels like Christmas. I finish work on Saturday and am so looking forward to the fantastic traditions our family somehow still maintain. Merry Christmas Everyone!

Wednesday, December 10, 2008

I've been a bit quiet haven't I...

Sorry about that.

Life is hectic. But wonderful :) I am trying to get organised for Christmas (and not succeeding) trying to keep away from colds (and not succeeding) and generally rushing around like a headless chicken (succeeding very well on that one).

Like the pretty widget thing for Holly's Battlefront campaign I've put in my sidebar? You can get one by visiting her page and scrolling down to promote this campaign.

Off to write some Christmas cards. I am I am I am.

Thursday, December 04, 2008

We have a new website!

WEEEEE!

Go and have a look! It's obviously not quite finished yet but hopefully you'll agree it's looking pretty good so far!

Can you tell I'm excited?

Off to calm down now...


Monday, December 01, 2008

Another hectic week has flown by...

But hectic in a really really good way. Lots and lots going on behind the scenes for LLTGL, Holly is feeling much better and mending well so her Battlefront campaign is getting a big kick-start, and work wise one of my Choirs is in a competition just before Christmas, not to mention the fact that of course all schools and choirs have Christmas concerts...

So it's rather manic right now! I was feeling nice and smug and proud that I started my Christmas shopping this week, then I received two Christmas cards in the post - people are so organised they're already sending their Christmas cards?! Erk!

I absolutely adore Christmas; sparkly lights, tinsel, glitter, presents, marzipan, clearly it's one of my favourite times of year! I am however rather scared at how fast it is approaching; this whole year has flown by incredibly quickly.

This is really quite a nothing update just to reassure people that everything is fine, just busy! Hope everyone else is also well and smiley.

Oh and one more thing, a little ask because if you don't ask you don't get...

My friend Jake got his transplant two months ago. All great, all fantastic, big celebration. He's a lovely guy, and his wife Laura equally so. They got married in the Summer so this is their first Christmas together.

Only Jake has had quite a few complications and setbacks. To the extent that he definitely will not be able to go home for Christmas. Not only that but some complications relating to his trachi tube means he will not be able to eat, drink or talk for the next few months until he's strong enough for them to sort it.

When I was ill some friends set up a Transplant Fund for me. Knowing how much of a strain Hospital puts on the family, I have set up a similar one for Jake. If anyone would like to contribute even the tiniest amount of Christmas cheer - please contact me through my website. Huge thank yous in advance.

Wednesday, November 26, 2008

Please take a look at the latest LLTGL blog.

Find it inspirational? Please email/send link to as many of your friends and work colleagues as you can in the hope they'll click on the link at the end of the post and sign the Organ Donor Register.

Big Thank You to Sarah and Peter who let us use their story to inspire others.

ps - I'm fine. I'm talking LLTGL stuff, rather than about me so it has to be a good sign!

Monday, November 24, 2008

I was thoroughly unimpressed by now. I had had a reading that had been ridiculously high much earlier in the year, had a re-test, and then it was fine. I explained this to them and was told that one of the SHOs was coming to talk to me. She arrived and I asked jokingly if she’d come to give me good news and she replied cautiously “I’ve come to talk to you.” She went on to explain that the un-recordable reading (which I’d automatically assumed was too high) was actually far too low. That it showed hardly any presence of Cyclosporin in my blood. She looked at me, somewhat nervously and said as firmly as she could “we need to know if you have stopped taking your medication.”

What I should have been able to do is casually laugh and gently reassure her that there’s no way I’d ever be that stupid but I was so shocked that my stomach flipped and I felt tears gathering in my eyes. I couldn’t believe they would think that of me. She went on to say that obviously they hoped this was highly unlikely but a sudden drop in lung function coupled with these blood results did begin to look suspicious.

Just to reassure anyone who may have any doubts, I would never ever stop taking my immunosuppressants. They are keeping me alive. They are keeping these lungs healthy. A handful of tablets morning and evening are allowing me to live a normal life. To stop taking them would be suicide.

I started babbling, feeling like I needed to prove myself to this doctor, who was very kind but didn’t know me at all. She explained that if I did have no cyclosporin in my blood they’d put me on an infusion straight away to get the levels back up. This helped clear my mind a bit – I knew there was no way the blood test could be correct and whatever the evidence might suggest it was not true. As she went to discuss it with another doctor, I phoned A tearfully, just to check that he hadn’t notice me miss any doses either. He reassured me that I know I haven’t and I got myself together and went to speak to the doctor.

I told her again that I’d never do that and due to the fact the level was so low (suggesting I’d stopped taking them for some period of time) I was convinced this was a dud reading so I would refuse the infusion for fear of further damage to my kidneys if they did suggest it. Luckily she said the other doctor had agreed that if I said I hadn’t stopped they couldn’t believe I’d ever do that either and it was suggested I return for a repeat blood test early the next morning.

This was all I needed to hear – they didn’t believe I’d ever treat my new lungs with that contempt. I was so relieved. I ran out of the hospital (forgetting to collect the inhaler in my haste) before anyone could change their minds and headed home for a good nights sleep. The next morning I whizzed back up bright and early, had the bloods (which they rushed through so I could go again if it was fine which I thought was lovely) and sure enough around 9am was told the level was absolutely fine.

I have no problems at all with the way the hospital dealt with this – I think they were cautious and thorough. If I was a doctor greeted with reduced lung function + no cyclosporin in blood level I’d have to come to that conclusion as a possibility too. Every move they made was for the safety of me and my lungs. As for the initial result (which must have been a dud reading) I’m just glad that it’s all ok now and mix ups must happen in the labs sometimes so no one is to blame.

As I say it was a strange few days. The inhaler has been fantastic and my lung func is nearly back to normal. My cold is also well on its way out. It’s not long till Christmas now (wooo!) and hopefully that will be the end of my mini-drama and I can focus on work and on festive preparations. Now if you want to read a real thriller of a story, take a look at Sarah’s blog, where she is detailing the incredible events in the run up to William’s Transplant.

Thanks again for all your lovely wishes and big yay for being at home.

Saturday, November 22, 2008

That was the end of my hospitalised blogging as things moved quite quickly after that. Good old Dr C (my fab consultant who tells it like it is, doesn’t take any nonsense and is extremely key in me still being here today) came round to have a chat. He explained why they’d pulled me in so fast; a drop the size of mine in 24 hours needs checking straight away. He told me not to be fooled by the “just a cold” scenario (which is a shame as that’d been my mantra since admission) as whilst hopefully colds would be “just colds” they could actually cause three far more serious problems:

1.Pneumocystis – which is where the infection actually gets into the lung tissue rather than into the airways (no thank you)
2.Acute rejection – I’ve not talked much about rejection so I should really explain a bit more here. There are two types. Acute, is a sudden onset rejection often characterised by a sudden drop in lung function, temperatures, a drop in oxygen saturations or all of the above. It is very common (most people have at least one episode in their first year) and is reversible but it’s vital that it’s caught quickly so they can change appropriate meds and treat it swiftly and effectively.
3.Chronic rejection – this is the other type and is a slower acting more long term form of rejection. It causes a progressive decline in lung function and reminds me a little of CF really. It is non-reversable although treatments can slow and sometimes halt progression.

They were looking for either one or two in me however a cold that settles on the chest and left unchecked could eventually be responsible for triggering three. A slightly scary talk yes but important as of course I feel so normal. And I am normal, it’s just I am normal as we (the hospital my family my friends and I) are meticulous about ensuring nothing occurs to jeopardise that. I must admit I’d never really considered a cold could cause me much harm post transplant so I am very glad that I am now much more aware of what to look out for.

It hasn’t really scared me though as I’ve had about 3 colds since transplant and this is the first one to go onto my chest, and even this one (by the looks of it) isn’t going any further.

Anyway so after all that, it was decided that I didn’t need a bronch, my lung func that morning had gone up slightly and a very audible wheeze could be heard but with no evidence on a CT suggested mild cold related inflammation. I was given an inhaler (ah my purple inhaler – I’ve sort of missed you for the last 21 months) just to help me over the next few weeks till this cold has shifted. Under strict instructions to ring if anything changes, I was told I could go home.

Just as I was packing up my stuff and chatting to a friend who’d come to visit her husband, the nurse appeared nervously round the corner, holding the curtain in front of her saying this was her protection. “Your Cyclosporin results have just come back...they are unrecordable. I’ve been instructed to chain you to the bed. You can’t go home.”

To be continued...

Friday, November 21, 2008

So yesterday's (posted) blog was written when I was in hosp on the Tuesday and had no internet (by the way I am out now and these are being posted retrospectively).

And here's Wednesday's blog.

“Good morning, sleep well?” asked a gentle cheery voice peering round the curtain. I answered sleepily in the affirmative and automatically held out my arm for a blood pressure cuff and sats probe; clearly being in hospital is like riding a bike. Perfect sats, BP and temp (hurrah) left me feeling positive, even when told I am now nil by mouth as if they still cannot locate the problem they will do a bronchoscopy at lunchtime.

I am on the 2nd floor so upon opening my curtains I am greeted to a lightly frosted spread of fields and trees, with golden sun-painted tips. The blue sky and early morning sunshine create a breathtaking view so I stand by the window, drinking it all in.

“Lovely isn’t it?” says a voice and I turn to see (let’s call her) S, a lady a few beds down, who has laboriously made it back from the bathroom, oxygen cylinder in tow. She’s in for her assessment and tells me she is worried she will not be accepted onto the list as she is over 60. It’s hard to answer to that so I tell her my honest feeling; that what they look for as well as age is determination and she clearly demonstrates this. But we are both aware that her age and frailty combined with the huge lack of donors and the number of young people waiting may well count against her. We chat a little, pausing regularly for her to draw breath and for me to stare out of the window.

Her emotional journey so reflects my own; your world becomes smaller, everything is a mammoth task...it begins to feel that you are existing rather than living. Only I didn’t have that fear that I wouldn’t be accepted onto the list. Well nothing is certain, so I knew there was a slim chance there could be a problem, but there were no evident factors which could cause an issue therefore my chances of making it on were fairly good.

I like S instantly, her warmth and openness is very apparent, and I am hoping very much that her body is strong enough and that the doctors will see a determination in her which allows them to put her forward for transplantation. She wanders back to her bed as a nurse approaches me to give me a huge hug – she’s just worked out that I am me with a new surname and has come to congratulate me.

I am feeling extremely happy and content this morning – two things which I definitely did not expect to be feeling right now. Sometimes something like an admission to hospital makes you stop and re-assess, and the most wonderful thing is that I am sitting here wishing I was back home and back at work. How lucky am I to love my job so much? To be so happy? It’s a nice thing to be missing these things and it reminds me how special they are to me.

As I am nil by mouth (the joys) my Lung Function Tests and CT scan are done and completed very quickly. If the CT results show anything, I'm heading down for a bronchoscopy. The phlebotomist arrives and takes more blood. Time to sit and wait. Thank goodness I have this computer.

To be continued...

Thursday, November 20, 2008

An interesting couple of days would probably be the best way of summing up the beginning of this week....

Some of you probably saw me on This Morning (thanks for all the feedback and messages as always). In case you couldn't tell, I had a horrific head cold that had just set in that day. Which triggered off a whole set of events....

Here is a blog written Tuesday afternoon.

So this is surreal...

Yesterday my lung function dropped. Due to the fact a stinking cold was attacking me with early-stage vigour (plus the fact that I was rather busy) I decided to let said cold die down a bit and see what the results said today.

Today they were exactly the same. As it was a rather significant drop I phoned Harefield who, to my surprise and annoyance, requested I come up straight away. I did as I was told (I’m so good) and the result is that it is now 6.30 in the evening, and I am sitting on a ward with hospital wristbands scratching the keyboard as I type, feeling a tad sulky at the fact that I have been denied bail.

I can’t really complain – after all it is a big drop and the fact they are so incredibly proactive and aggressive in their treatment of anything suspect is very good news indeed for me. I am just being a tad petulant as, well, I’m busy. When I used to go into hospital it was part of my regime (pretty much a monthly occurrence) but now my week is full of stuff and suddenly I am feeling nervous at the prospect of having to put off said stuff and how to explain my absence. Suddenly I am “normal” and everyone views me as such, therefore announcing I’ve been taken into hospital may cause shock and worry, rather than “oh no not again” followed by purchases of standard sweet supply for hospital stays.

Filling in her paperwork, the SHO asked “when were you last admitted for treatment” and I surprised myself as I found myself answering “January 2007, for my transplant.”
After filling in a mountain of forms (nurses have been given what appears to be an entire new book to fill out on admission – just what they need; more paperwork to keep them from looking after their patients...) I lay back on my bed, pressing the little green arrow on the control pad to raise my head. The sensation and the noise took me sharply back to my lengthy recovery, and spending week after week staring at the ceiling, watching people walk in and out of my vision, coming and going whilst I remained static.

It’s oddly unsettling to realise that you’ve become so used to being well and being away from hospitals that the memory of when you were part of that world seems more like a memory of a film clip than one of your own lifetime.

One of the strangest things is that I don’t have a clue what is going on. The team are being fantastic (as always) and explaining everything, but when I was admitted with my old lungs I knew pretty much what was causing the issue, what they would look for, what they would do and how my recovery would go. This is all brand new and very strange – I feel daft asking questions about what will lie ahead tomorrow but I am so used to knowing it feels uncomfortable being in the dark.


To be continued...

Saturday, November 15, 2008

So Gordon Brown's Opt Out proposal has been turned down by the Organ Donor Task Force.

Interestingly, I am neither surprised nor bothered by this result.

Opt-out seems in theory like the perfect solution, but after a couple of years of delving much deeper into transplantation and organ donation it's become clear that actually it is far from the definitive answer.

The issue of opt out is a very complex one, with so many factors it is actually difficult to see what kind of affect a law like that would actually have on organ donation rates.

Emmie (as always) explains things much better than I do on our intoto forum:

I have to say that the decision didn't come as too much of a surprise to me as I had been getting the vibes for some time that the taskforce was unlikely to come out in favour of legislative change. I don't believe its a huge blow however and I think that much more important steps are being taken to improve donation and transplant rates thanks to the government's acceptance in full of the task force's recommendations that came out in January. Thess aim to increase organ donation rates by 50% over the next 5 years and is based on the success of the Spanish system of organ donation. Contrary to what the media may be saying, Spain has the highest donor rates in the world because of its system not because of its presumed consent laws (and this is backed up by the man who set up their system).

Even if we had gone for an Opt-Out system of consent, families would still need to support their loved one's organs being donated in order for it to proceed so the key would still be education, awareness and understanding just as it is now. And there would have been the danger of a backlash against the system with people removing themselves from the list in order to make a point. To my mind the most important thing is that plans are already being carried out to change the UK's organ donor crisis and I think that this change is long overdue.


I am not against opt-out, and it bugs me when people start ranting about "choices being made for them" (surely if that's the case the choice is currently being made for them not to donate!?) but I personally do feel now would not have been the right time to bring in opt-out: people are not ready for it, there is too much confusion, too many myths, and too little education, all of which must be tackled first.

I was on LBC yesterday talking about it all and it looks like I will be on This Morning and on ITV lunchtime news on Monday....will keep you posted.

I am off to a LLTGL Meeting today and very excited about seeing everyone and doing looooads of work. WOO!

Wednesday, November 12, 2008

I've been thinking a lot about death recently.

That got you sitting up and paying attention didn't it ;)

In all seriousness, I have been thinking a lot about it but not my death, just death in general. And in a negative or depressed way, a genuine interest in our (the UK's) psychological approach to death and dying. Honest.

I think we (society) actually have an unhealthy viewpoint about death. I mean obviously no one wants to die and so fear of death is natural. But a fear of talking about death? I think is taking things a bit too far.

You can probably see where I’m going with this now. I wonder how much of our attitude towards death has a knock-on affect on the lack of people on the organ donor register? The next logical comparison I can think of would be a will – who has actually made a will? Come on hands up...I suspect most who have, have either done so because a) they’ve been made to face up to their own mortality (like me) or b) have a dependant which means suddenly it becomes a practical necessity therefore easier to tackle than when it’s merely an emotional concept.

I went to a fascinating lecture when I attended the Manchester study day on transplantation. It was all about death and dying; how we view it, how our preconceptions of death may have an impact on organ donation and on how those approached view the scenario in front of their eyes. Ask a child what a dead person looks like and they will probably stick their tongue out and roll their eyes upwards. How much of that childish notion remains and interferes with what a potential donor family might see in front of them?

How much of our negative viewpoint about death has a knock-on affect on our viewpoint of organ donation? Clearly death is never going to be a positive thing but I’m wondering if other cultures who have different perspectives on the whole life/death cycle would view organ donation differently?

I believe our reluctance to talk about it and face up to it has a negative impact on people when they are forced to. There is no preparation, very little support, and an unwritten rule that you shouldn’t talk about it as you’ll “bring people down”. What about young people who are facing their own death? Where do they go to talk? I had a talk with a nurse at the hospital which will remain with me forever as it was the first time anyone had answered my questions (which I felt terribly guilty for even wanting to know) about dying and had talked openly about it without flinching. It made things far less scary for me as suddenly I felt I wasn’t on my own, facing the unmentionable.

Every now and then I get vaguely concerned at how interesting I find all this but I think as long as I am able to keep it as an interest on an academic level (trust me, I am very much alive and living it up) then I’m allowed to find it fascinating...aren’t I?

It’s one of those blogs where I ask more questions than I answer. Nevermind. I would love your input on this, and to know how uncomfortable it made you reading this post.

And now I’ll get back to doing some more living.

Thursday, November 06, 2008

SHE WON!!

Holly won Battlefront!

We're all absolutely thrilled for her; she worked so hard campaigning and totally deserves this. As she still has one v new (and apparently lazy) kidney I am helping out a bit (gulp) but all credit goes to Hols for being a star and shining so bright the judges had no option but to pick her as the best campaigner.

Hols, we're all so proud of you and behind you every step of the way xx

ps - forgot to say (most importantly) YOU can help! Just go to Holly's battlefront page to find out how to promote her campaign on blogger, bebo, facebook, myspace etc...

Thanks muchly x

Monday, November 03, 2008

A year ago today...






I cannot believe the most magical and wonderful first year has flown by so fast...I am so lucky.

Thursday, October 30, 2008

On Tuesday, Oli and I went to see a very special couple. Nyila and Zulf live in Coventry, and had agreed to chat to us and to have their story filmed so we can use it for raising awareness.

Fantastic stuff. Of course we have many fab volunteers stepping up to share their story, because they want to raise awareness about their plight. But Nyila and Zulf are different, because their story has already had it's very sad ending.

Their son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive.

They described him in such a passionate way I could imagine him really clearly - his mischevious personality and cheeky smile captured in dozens of photos we went through. They laughed over fond memories - such as the fact that he apparently struggled to hold his milk bottle yet would quite happily wave a 2 litre (empty) coke bottle around!

Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list. They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and at times during the interview I was wiping away my tears, trying to remain professional.

I cannot express how much I am in awe of Nyila and Zulf - they are so determined to stop other families going through what they have and are intent on supporting us inspite of their grief. Their story is so moving, it cannot fail to motivate people to think and talk about the subject of organ donation.

It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs? I'd love to hear some opinions about this.

Oli is putting together a video at the moment, featuring Ubaid and Nehal's stories, which I will be using on Saturday when I speak at a dance festival called Kalaalayyam. Who knows how many lives might be saved by these people speaking out about their experiences - without real life stories, Live Life Then Give Life would not be as strong as it is; we need you to help us help others. And as for me personally, I can't think of anything more motivating to remind us why we do what we do.

Monday, October 27, 2008

On Saturday, Oli and I joined our advocate Nelly in Uxbridge to walk 5k. Why? Because of the World's Biggest Walk, that's why!

Nelly had organised everything and at midday we set off round her town, decked in bright blue UK Transplant balloons to raise awareness about organ donation. It felt rather strange but great knowing people all over the world were walking at the same time as us and the weather was kind, holding off from raining until we finished.

It was the first time I'd ever met Nelly and her family and I was struck by how tight-knit they were; it reminded me very much of my family, and I know for a fact I would have gone insane without my family's support during the long wait for transplant.

Nelly is of Asian descent, therefore faces a much longer wait due to the critical shortage of Asian donors and the fact that people from that background are three times as likely to need a kidney transplant. Her kidney failure has caused rickets which means she is now wheelchair bound. Yet during the entire day, I didn't once see that girl without a smile on her face.

The walk was fantastic, Nelly's family and friends so lovely and eager to do everything they could to raise as much awareness as possible. Oli filmed the event (with our brand new LLTGL filming equipment - woohoo!) and I tried to look impressive by carrying the boom mic around. It was a fantastic day and I did notice at the end how inspite of a) walking 5k and b) wearing stupid and inappropriate shoes I felt fine at the end. How lucky am I.

Tomorrow, the Oli/Emily filming duo disappear off to Coventry to film a rather incredible couple...they lost their son a few months ago and have agreed to talk to us about why organ donation is so important. I think it will be an incredibly emotional day and I am nervous as I don't want to get too upset and make anything worse for them. They sound like truly amazing people and I am very much looking forward to meeting them.

I shall leave you with a few pics of the Saturday. YAY!

Oli Nelly and myself
Team Nelly!

Sunday, October 26, 2008



YAY!

One of our superstar advocates, Holly Shaw, has got her new kidney!

It's very early days, but so far so good. If you get a minute please do pop along to her blog to leave a message of support - I know it will mean so much to her when she reads them.

Thank you.

Friday, October 24, 2008



It's been a sad 24 hours as we lost Toria (above) after a long and valiant struggle with CF. Toria leaves behind not only a grieving family but an 8 month old little boy. Take a look at her blog at some point; she was an extremely talented and open writer and it’s well worth a read. Along with feelings of heartache for her family, it has raised some hot emotions and some frank confessions.

I don’t really want to write too much on the subject as the most important thing is to remember Toria and what a wonderful vibrant and strong person she was, but to the Anon commenter on Oli’s blog, his feelings were only as judgemental as yours. Humans feel deeply and passionately and sometimes feelings are driven by emotion. No one can help that; that is why you wrote what you wrote and why Oli felt what he felt (which he is shrewd enough to observe about himself in his blog). As far as Toria goes, I’m just so saddened; she was a truly feisty woman who I was privileged enough to talk to on many occasions, and will be greatly missed by everyone who knew her. Thinking of her wonderful family, L and E at this sad time.

Moving on....I had another blood test last week which brought me back down to earth with a bump as my creatin (or apparently creatinine? Did I make the first up?) has risen again to 134 – highest it’s been. Humph. I am awaiting further instruction from Harefield. I’m feeling great (yay!) but I suspect they will want to try this new Immuno and have to confess I’m scared. Scared because I have been so so lucky. No rejection so far (touches wood 1000 times) which is almost too good to be true. And the cyclosporin is the only drug which I have been on consistently since day one, so it’s hard not to attribute my good fortune to this.

As always, the most important thing is to listen to my team, so this is what I am planning on doing. They’ve seen all this before and have told me already it’s a fairly common side-affect of cyclosporin, so whatever they say goes. Even if I do have a bit of a pout about it. My potassium was too high to but a) I don’t know what that means and b) apparently it can be caused by the “trauma” of taking the blood (I had 5 attempts with two people trying) so they’re just going to re-do the blood tests; probably nothing at all to worry about.

Lung-wise? They are awesome. Work wise? I am happy, busy and feeling very fulfilled. Life wise? It rocks and I love it.

Monday, October 20, 2008

I've had one of those weekends where you're just doing bits and bobs, but loads of wonderfully lovely bits and bobs.

Catching up with friends, visiting people you've been meaning to go and see but keep not getting round to, cleaning the house and feeling the satisfaction of it being all sparkly and tidy, seeing family, resting and relaxing in front of guilty-pleasure TV...

It's weekends like that when I reflect back on how it used to be. There was no option to suddenly decide to go and see people or head to the pub for lunch. I couldn't pop round to my family then rush back as I had to head off somewhere else. Everything was unconfirmed, waiting to see if I was well enough, if I had enough oxygen, and if it as a yes it was a military operation to get me out of the house. Honestly...how lucky am I!? At this point I'd like to mention a friend of mine, Rachy, who is not as lucky. Any support you can give her is greatly appreciated....by her and by me.

I am off to Manchester later on to stay with our lovely Advocate Holly. I assure you it's all for work purposes, I am spending all Tuesday at a study day at the Manchester Royal infirmary, hosting a LLTGL stand, and giving a presentation about our charity and of course about me. It'll be a long day but I'm really looking forward to it; I've so been bitten by the "giving talks" bug again since doing the Justgiving one.

Just give me an audience, and I'll talk at them...who knew that my teachers' biggest concern at school ("Emily talks too much". "Emily is a bright student but needs to concentrate more and not get distracted") would turn into such a bonus? woohoo!

Oh and one final random comment - can anyone involved in design and/or fashion please drop me an email? Thanks muchly.

Thursday, October 16, 2008

Click here to see a photo of me being extremely professional at the Justgiving Talk. Suggested captions in comments section on the LLTGL blog appreciated ;)

Monday, October 13, 2008

Last week I did a talk at the Justgiving away day. For those of you who don't know, justgiving is an online service that facilitates charitable donations online. I have been using them for years for the CF Trust, and LLTGL is now registered with them as well.

The talk went really well, and I loved meeting everyone from the JG team - a very friendly bunch who kept bringing me cups of tea and were just very sweet, thanking me for coming to speak to them about my personal fundraising experiences. You can read their account of the day on their blog.

One of the organs which seems to be surrounded by the most misconceptions is the liver. (By the way I am off on one about transplants in case you hadn't gathered)

Unfortunately I have met people who have said they have said no to donating their liver on their organ donor card as they "don't want some alcoholic to waste it". Whilst I see that this is an understandable concern it saddens me. After all, perhaps if my donor had declined to donate their lungs in case a smoker ended up with them I would have died.

It's all so personal, so dependant on perspective, belief and choice. I actually find it really interesting how some people seem to be more reluctant to give certain organs. I know a few of my friends find the idea of donating their corneas too much to contemplate. I also never realised (until I read this blog) how important it is to tick "all" as some things (such as the small bowel) which I would have assumed was an organ do not have their own box on the organ donor card.

So anyway, this video I think demonstrates just why the liver is such an important organ and shows just who is waiting and hoping for that call, and who you actually might end up damaging by not ticking that box.

Click to watch a video on Bethany's Transplant Assessment. Speakers on...

Thursday, October 09, 2008

Apologies for the slight delay in blogging, I have had a very busy (but fantastic) 2 weeks being a Tour manager around London and France. Anyhoo, back to the world of the real (as opposed to eating dinner with Minnie Mouse, pic hopefully to follow) and things are no less hectic back here!

Without going into too much detail I had a not very pleasant couple of months a while back, and was finding myself crushed under things which gave the pretence of being vitally important but which in actual fact, weren't. It's easy to lose perspective when someone is in your ear persuading you to dedicate all your time and energy to something that if you stood back and took a look, was never really that important to you in the first place, and certainly wasn't helping anyone (something I have since realised is pretty vital to me for fulfilment purposes).

Now I look back I am surprised at how easily my confidence was crushed; I would have thought I'd have more emotional strength than that but then again it is a new world now, one in which I feel I don't have much experience in and certainly less than my peers, so it was easy to believe that when told. It feels like it would be so easy to now say "I want to stick to things that I know I can do" but I think it would be much healthier to keep on trying new things, and learn what else is out there.

I think I might have mentioned before an advert I've seen on the tube which says something like "there are a million different ways to change the world. Find yours." I've already found mine, I know what it is and what I'm good at and what I love to do with all my heart and soul. And when I am kept so busy that I don't have time to even glance at it, I become frustrated and unsatisfied. I just now need to work out how to balance necessities of life with doing what I love: helping people and raising awareness for a cause that is so near and dear to my heart.

I'm still a little lost, but I'm getting there. I have a map now (I think) but it's in Spanish and it's upside down, but at least it's there and I'll slowly start figuring it out. I'm learning that I am good at stuff again, and feeling more confident and gathering myself together again, to how I was. Surely nothing is worth losing your sense of self over is it.

A little cryptic? Sorry. As often happens this blog is more for my own benefit than for my readers. Have a picture to make up for it.


Thursday, September 25, 2008

Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.

LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.

Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme.

To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc. http://battlefront.co.uk/campaign/the-gift-of-life/

Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4.

Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...


http://battlefront.co.uk/campaign/the-gift-of-life/

Monday, September 22, 2008

I am still on a total high from Thursday night and can’t quite believe that we won. We are an award-winning charity. LLTGL are the Campaigning Team of the Year. It all just seems too incredible to contemplate. It seems like only yesterday Emma and I were sitting surrounded by thousands and thousands of plain T-shirts, trying to decide the best ones to use, completely unaware that what we were about to start was going to grow to be so huge.

On Thursday, me, Emma, Oli, Jen and Hal attended the Charity Awards 2008, knowing we were finalists in the Campaigning Team of the Year category. We were all totally over excited but figured that we wouldn’t win (see some of the competition to see why!) but the experience would be amazing.

The Royal Lancaster looked beautiful and everyone was beautifully dressed and buzzing with excitement. We were by far the youngest Charity there. Oli and I looked at the table plan and started giggling. We were table number 37....of 37. Right at the very back. Clearly we were not going to win as the winners had to make their way up onto the stage to collect their award.

Everyone was asked to take their seats and dinner was served. Unfortunately (and presumably due to the amount of foods which are on my “not allowed” list) I was served a plate of fruit as a starter, however the main (guinea fowl) and pudding (chocolate) were gorgeous. We were on a table with the Football Foundation and GAM, both of whom were lovely.

As you will have seen by the video clip by now, we genuinely didn’t think we would win. That shake of the head I give just prior to the announcement is to Emma, as just before that the charity who had received “Highly Commended” had been announced and that was what I was hoping we might get.

From then on it’s all a bit of a blur. We headed up to get our award, people cheering all round the room, and when we got onto the stage I grabbed the host and said burbled something about how most of us were transplant recipients. Unintentionally this outburst got me 20 seconds on the mic to the entire audience, which means we were the only charity who was allowed to speak during the whole ceremony! (How’s that for PR...).

The rest of the evening was just fantastic. People from other charities and organisations were coming up and congratulating us; everyone was so sweet and so touched by our charity and our backgrounds. It was a truly amazing night, and I think I can safely say that we all felt incredibly privileged to be there. It also reminded me how strong we are as a charity; we have virtually no funding, we have no employees, we do everything ourselves and everything on a voluntary basis. Yet all round the country, people know who we are and are cheering us on.

Live Life Then Give Life is an award-winning charity. And we are well and truly here to stay.

Friday, September 19, 2008

I will write all about it later but for now take a look at this (speakers on).

The winning Campaign Team of the Year is announced.

YAY!

Thursday, September 18, 2008

So I'm sitting by my computer, doing some work on intoto (plug plug plug) when the phone goes. I answered, and there was just a muffled silence. After saying hello a few times I began to get a little worried; there were rustling noises and I could hear someone but couldn't work out what they were saying.

Was I being stalked? Why wouldn't this person hang up or answer? My imagination began to run wild (I've been watching too much CSI recently) and I got up to make my way to the kitchen to find rolling-pin-type-weapon or similar when I noticed my mobile (which I had been sitting on) was lit up with "Home" on the screen...

In other, more intelligent sounding news, we are off to the Charity Awards tonight. We are up for Campaigning Team of the Year. Looking at the competition I think it's unlikely we'll win (we're tiny compared to the other Charities!) but what an honour to even get to go! Wish us luck and watch this space for all the gossip....

ps - I typed dappy blonde into google image search to find a pic to accompany this tale and was less than impressed that result number 7 is in fact, me. Well my feet. Perhaps I should take the hint.

Wednesday, September 10, 2008

OK so a slightly longer break than I promised - oops - but life is hectic (in a good way :))

So, Sunday...

We were all rather apprehensive due to the utterly dismal weather which is making it feel more like winter than the end of summer, but I was determined to complete the course no matter how hard it was bucketing with rain; I even brought my spotty brolly along just in case. Due to a) a lack of time b) a lack of imagination and c) the fact I wanted to wear it again, I was once more donned in my bright pink fairydresswithsparklesandeverything. On arrival we trudged across the muddy field to the CF Stand, where we were supposed to meet the other CF angels. Due to cold weather and slight disorganisation this year, we managed to miss most of the other Angels but a small group of us did manage to head towards the starting line together.

As always, I was totally over excited. I love the day at Hyde park; it’s the only opportunity you get to see other CFers and CF supporters (outdoors being the lowest risk) and it’s just so nice to be able to wave to the people who support you constantly, through virtual means, but the support is no less real. I was bouncing round chirping at everyone (on reflection it was possibly a tad too early in the morning to be so awake) and whooping so much I was in danger of wearing myself out before the race even started.

After posing for a few pics and chatting to the lovely CF Trust people manning the stall, we headed for the start line. Well actually, being in the slowest group (there was no way I was going to try and imagine I could run the whole thing and hold all the proper runners up by being in the wrong category) we were about half a kilometre back from the start line, and we weaved our way amongst thousands of other brightly coloured ladies, all eager to get started. I’ve said so before but I just love this day so much – the human spirit it brings out is inspirational to witness. People running for friends, for family, for those fighting illness, for those lost, everyone together, wanting to spur each other on and wanting to cross that finish line.

We finally crossed the start line 20 minutes after the start gun had gone off (and amusingly 5 minutes after the winner had completed the course) and with much whooping and cheering we were on our way. We set off at quite a pace, jogging past others, but I quickly felt my lack of diaphragm kick in. Actually I must admit I did not train nearly enough, but my stamina is now quite good, my ability to speed up remains about the same as a year ago. Consequently I lost my puff quite early on but was determined not to slow down past a strong powerwalk. As others moved forward to keep to their own pace, my mummy and sisters stayed by my side and we marched swiftly on, me grasping my mum’s hand and pursing my lips hard (just like I was taught at the Brompton – I hope my physios would be proud!)

I knew we were definitely moving faster than we had done a year ago, and each K marker we passed boosted my confidence that bit more. At times I found it a bit frustrating; I feel so well now and feel like I could just run, but need to accept that my body can’t do everything and running is one of the things it still struggles with. Due to the hideous weather, there were very few people marking the route to cheer us on, however those there were shouting encouragement and you could see the affect it had, everyone definitely moved quicker past groups of supporters than they did at quieter parts of the course.

We continued to weave our way along, power walking and jogging intermittently, and I was beginning to get very hot and sweaty (will choose to ignore any suggestions that inappropriate clothing played any part in this). Suddenly I recognised a hill ahead and realised we were nearly at the point at which I got out of my wheelchair to walk two years ago. We quickened our pace and as the final corner came into view, broke into a run. I could feel my heart thudding in my chest as my lungs tried to keep up with my enthusiasm, and as if realising I was struggling, my family grabbed my hands and we ran forward in a line. I was gasping (and fairly dizzy) as the finish came into view but crossed it at almost exactly 53 minutes.

53 minutes!! I couldn't believe it. I was hoping to come in around the hour but that is way better than I imagined. And even more importantly it was a struggle, and I wanted it to be a challenge as, well, otherwise I can’t really justify asking for sponsorship! Overjoyed and exhausted, we headed back to the CF Trust stand to congratulate fellow runners. Unfortunately the weather was just far too cold for a picnic, so we returned home fairly swiftly.

My legs have been aching like anything since but ohmygoodness I love that feeling! It’s as if I did something real and sporty (I can pretend can’t I?!) and even better my lungs feel fine and did do within minutes of me stopping. I think I will always do the Hyde Park 5k, every year, for as long as I can, because it was my first ever race and because it will always remain so dear to my heart as witness of my transformation into a new life with new lungs.


2006

2008

Still time to sponsor....click here to do so!

Monday, September 08, 2008

I have a fair bit to write about after a rather incredible weekend so this may well turn into quite a long un.

On Saturday, LLTGL was invited to a ceremony by a fellow charity named BODY (British Organ Donor Society). I will now shamefully admit that I hadn’t paid much attention; I knew they were dedicating a tree to our charity as recognition and I knew that Oli and I had said we’d go as let’s face it if a fellow charity is recognising your work then that’s the least you can do. What I had not realised is that the day consisted of so much more than that. That it was an annual church service of thanksgiving for donors, that it had been going on for 22 years, and that it would have an incredibly strong emotional impact on me.

The service was held in Wimpole National Trust (which is a beautiful place incidentally) in Cambridge so it was a fairly long drive and I felt a bit hot and bothered by the time I got there. We found the marquee fairly quickly and introduced ourselves to the small gathering there. I wandered off to look at the display boards set up round the outskirts of the marquee, and it began to hit me just what kind of day this was. There were little cards with messages from donor families to their loved ones and from recipients to the donors they’ll never meet stuck up in rows. There were lists of names, hundreds of names, of donors, people who are now gone but thanks to whom other people are still here, stuck up on another board. When you are this side of the transplant fence you of course think of “your donor” but they are anonymous to you, and this made it all so much more real that someone was dead and that was why I was still alive.

I am not religious in any sense of the word, however the service was indescribably beautiful. The candle ceremony was particularly poignant; where from one large central candle six smaller ones were lit, symbolising the gift passed onto six others...then the large candle was taken away.

People were invited to get up and share stories. The chairman of BODY read out a poem he’d written his wife during an extremely difficult time (they lost their son and donated his organs) and spoke gently about how important it is to remember those still there, and not get lost in the grief of those who have gone. Moved to tears by his bravery, and following another recipient, I got up and said a few words. I would like to consider myself quite an expert speaker by now, but my voice was shaking and I wanted to sit down fairly swiftly. I just wanted the amazing families gathered to realise just a bit how important that decision which all unites them has been to me and my family.

Tears flowed throughout the service from all around, however there was somehow a very positive air as well. I think the strangest thing for me was being a minority – a recipient – surrounded by those responsible for people like me still being here. It was a truly humbling experience.

After the service we walked a short way through the park to see our Tree. The Charity owns an avenue of Trees and ours is number 43. The Trees in this avenue are dedicated to individuals or organisations that make a difference in the world of Transplantation and Organ Donation. To be recognised by this lovely, personal and humble charity made me very proud indeed.

This is an annual ceremony, and I will be back, as it made me reflect on my donor in a way I have never done before, and I intend to make an annual pilgrimage to support BODY and to think about my donor family as I took so so much away from that day. It is an open ceremony, so if you are interested in going at some point contact me for further details.

This is a ridiculously long blog already. I am going to have to write about the Hydro Active, sorry, the Adidas challenge another time (perhaps later). Suffice to say 53 MINUTES BABY!! Now surely that is worth some sponsorship...

Wednesday, September 03, 2008

I heard this story on a factual, newsworthy programme* and I wanted to put it up here. Time and time again there are posts on the message boards I belong to about people crumbling and struggling, who see it as a sign of weakness that they need to reach out (yes I am aware of the slight pot, kettle, black situation here) so here is the little story; as a reminder to me, as a reminder to anyone else who ever struggles as to what exactly strength is. I know it's a little cheesy, but I just like the sentiment.

A little boy and his mother are out walking. The little boy spots a rock, points at it and asks his mum if she thinks he can lift it. "If you use all your strength then yes you can" his mum replies, so the little boy runs straight to the rock and grasps it firmly. He strains and struggles, and tries several times to lift it, but to no avail. He tells his mum he cannot lift it, but she replies again that he can, and then walks over to him where she also grasps the rock and together they lift it up. The mother explains to her son that using all your strength means enlisting the help of other people, of those around you who want to be there for you and support you.

So next time you are struggling....use all your strength.


*or it was on a cheesy American soap but I don't think that detracts from the point of it being rather good.

Tuesday, September 02, 2008

As always, thank you so much for your lovely responses and emails. That’s one of the things I love about this blog, I can quietly be reassured that I’m not completely nuts and then carry on day to day stuff as normal. Anyway who needs a map when life’s an adventure? I’ll take the surprises thank you very much; it’s not done me any harm so far.

It’s been a very busy but lovely time since I last wrote; middling sister turned 21 and we had a fantastic weekend of family, friends and laughter. I absolutely love family time; I’m very lucky in the fact that quite a lot of my family live nearby, and it’s always so wonderful to spend happy time with them after all the ups and downs they’ve been through with me.

On Saturday we had a LLTGL meeting which was very exciting indeed. Being a real grown up charity and everything, we now need a formal business plan to demonstrate how we will be moving forward over the coming months and years. It reminded me how incredibly lucky I am to be involved in LLTGL, as I learn so much from it, get to exercise my passions, and it’s all for a good cause! Perfect! Following the meeting, I was kindly fed and watered by Oli and his lovely K. We killed some time on the Wii (I am rubbish) and as we howled with laughter at my darts “skill” I realised how incredibly lucky we both were to be standing there; if it wasn’t for organ donation, neither of us would be here anymore.

Tomorrow we are off to the Department of Health which is yet another incredibly exciting event for LLTGL. Incidentally, did any of you who entered the Great British Duck Race win? Numbers are up here now...my duck was clearly too busy admiring its own reflection or something. Nevermind.

Oh and one last plug; on Sunday I am, er runwalking the Adidas 5k (formally and more favourably known as the Hydro Active). I have dug out my bright pink fairy dress and am dusting off my pink trainers. Even if it’s tipping it down (like it is today) I’m there with glitter on. So please please take a minute to sponsor us to help see off CF. Thank you muchly.

Wednesday, August 27, 2008

One of the biggest differences in life now compared to life when I was ill is change (this blog is a bit of a stream of consciousness, bear with me).

Whilst I was waiting for my transplant, the only thing that would ever change was my health status, or at least that's the only really significant thing I can remember changing. I am not sure if this was carefully manufactured (people ensuring stability in all other areas of my life) or whether it was logical (if you can't get out and do stuff then nothing really changes) or even whether it's just my memory focusing on the part of my life which captured most of my time and attention. But I am fairly sure that in everything else there was a reassuring yet dull consistency, one which is artificial, whatever caused it.

I am still quite surprised at how fast the course of life can change this side of things, and I’m not sure I’ve quite taken it all into my stride yet. I always prided myself on being so independent when I was ill but sometimes when change occurs now I still find myself reaching out to someone just for a bit of reassurance (normal behaviour? I am unsure). Luckily for me, the tight-knit circle of people I had when I was ill have gone nowhere, but we just have a much more balanced support relationship now. For example baby sister number one (middling) is turning 21 this week (sob) and it was jointly agreed that her room needs a bit of a make-over (there are still toys of mine in there from when I was 8). I was able to spend the entire morning there helping tidy, dispose of and clean and it felt fantastic just to be able to chip in and do my bit. I don’t think I’ll ever get over that joyous feeling of doing something “normal” and remembering how impossible it used to be. And I never want that feeling to fade.

So yes, change. I’d like to ask for some feedback actually; whatever stage you are at in life (not ill, transplantee/patient/CF whatever) how do you adapt to change? Am talking about larger movements in life (job, house etc). Are you confident with where you are going next or is life still a bit of a mystery that you’re feeling your way through? I still love the adventure; it's exciting and has movement, pace and opportunity...I’m just wondering if I’m the only one without a map.

Tuesday, August 19, 2008

So yesterday I went to see the Kidney man.

This is not his name because he a)looks a bit like a kidney or b)consumes them on a regular basis, rather that I can never remember his name and he is the Dr who looks after our kidneys post transplant.

As you should have read here (if you've been paying attention) my kidneys have been being ever so slightly naughty so Dr C booked me in to see the Kidneyman to have a good look around and check that there aren't any other factors which are causing my Kidneys to muck around.

I had a Kidney ultrasound, which apparently I also had in Feb 2007 but I don't remember at all (suspect I was knocked out as I was still ventilated at that time). For those who haven't had an ultra sound, they squeeze what they promise will be a warm gel onto a probe (which I think looks a bit like a barcode scanner at the supermarket) and then dig about on your abdomen. Whenever I squirmed a bit (they have to push around quite firmly to find the kidneys I think, not really sure) the radiographer commented "ooh, ticklish?" to which I had to bite my tongue to refrain from commenting, "no and you need to look up tickling in the dictionary as this is certainly not it".

It all went OK however and isn't painful at all and I was informed that my kidneys look fine which is a big yay moment. I then went and completed all the regular tests (stonking lung function - think Greece must agree with me and am considering requesting holiday funding on NHS) and then my lovely mother who accompanied me as it is the summer holidays (she is a hardworking teacher. OK she's a teacher) took me to Uxbridge to buy lovely things. YAY! After our shopping expedition and lunch (as we were a bit fatigued after all the shopping) we returned to clinic to see the kidneyman.

He was very nice and extremely reassuring – I have been pretty nervous about all this as it’s something new. I am pretty used to my lungs mucking around but I was asleep when I went on dialysis post transplant so am only used to having good well behaved kidneys, and would like them to stay that way please. Anyway he was quite clear that he is not alarmed as yet, however there is an evident drop in kidney function and he estimated that my kidneys currently have about 50 – 60% function. That came as a bit of a shock; to be honest I didn’t even consider that they might be able to measure how well they were working through those minor tests.

Apparently it looks like I am just one of those patients who is going to be more sensitive to cyclo. This means that at some point we will have to change my immunosupressants to try and preserve my kidney function. Not particularly thrilled at this prospect as I have been incredibly lucky so far and not had a single bout of rejection (touches all the wood in the vicinity) but as they said, my kidneys are young and strong and we’d quite like to avoid dialysis (it does make me smile how lightly they drop these options in, as if they are mentioning the need for a new haircut or something).

So yes, the summary is: currently nothing to worry about, so we watch and wait as I am still fairly “new” post transplant therefore let’s not rock the boat before we have to. However at some point we will be changing my immunos. Incidentally massive thanks to those who responded saying they’d had their immunos switched as it helped to read other people’s experiences. I am lucky to have such a fabulous team as they are constantly pre-empting anything that might happen which means I have lots of options open to me and my kidneys are being well looked after. If anyone is medically inclined and (like me) curious to know why I am not on Tacrolimus and MMF, the reason is that Tacro can cause diabetes and as I am pre-disposed (is that right?) to it anyway cyclosporin is the better option. Plus Tacro is equally as toxic to the kidneys (or nephrotoxic – check out me and my medical vocab). For anyone who wants to learn more about kidney...ness I suggest you check out Holly’s blog; she is one of our LLTGL advocates and is waiting for a kidney transplant and explains things ever so well.

Looking back at yesterday it was a very good day; no huge current issues with my kidneys, my chest X-ray was described as “pristine” – all I need to do now is lose a little of my holiday weight...

Tuesday, August 12, 2008


We went to a gorgeous little place on the coast in Greece; a little bit of paradise that my family and I discovered way back in 1993, and due to falling in love with it went back a further 6 times. On that last visit, I knew it would quite possibly be the last ever one for me. I loved it as much as I always had done but merely being in the heat was exhausting, let alone walking along the beach or up the small rocky steps to our apartment.

As I mentioned in a previous post, this was the place which I went back to in my mind when things were at their most tough. Whenever I was undergoing procedures or trying to keep myself calm, I’d picture myself, eyes closed, lying on the white sand listening to the waves with the Greek sun beating down and warming every inch of me. Needless to say I was rather excited about returning, plus this time A was coming so he’d get to see what all the fuss was about.

The holiday was fantastic; 2 weeks of heat, sunshine, good food and lovely people. I couldn’t believe how different it was for me, and the lack of effort (compared to last time) it would take to do things still surprised me, even though I knew me and my old lungs had had to work very hard to keep up.

I got a bit of swimming confidence back too which was lovely. When the turquoise Mediterranean stretches before you, cool and inviting, it’s much easier to overcome the fears developed over years of tiring quickly and suddenly, and by the end of the holiday I was swimming right out to the buoys that marked the end of the bay and back again. I walked to the cliff edge one evening and stood and watched the evening sun dance and sparkle on the sea, before throwing some flowers in for my donor, and watching them drift out slowly and disappear into the glittering waves.

It’s strange being back home; that feeling of “was I really there?” (which I’m sure hits all holiday makers when they return to normality) has hit home and I am now trying to catch up on real life where I left off. I had the most amazing two weeks and really cannot believe my luck that I was able to return to such a gorgeous place that is filled with so many memories from over the years.

Busy (but exciting) week ahead, so more to come soon, but for now here are some more pics which whilst they don’t do it justice, demonstrate slightly just why I love our little Greek paradise so much.




Friday, July 25, 2008

Cabaret favourites....



....was awesome.

More on that to come, but I may not get a chance before I go on HOLIDAY!!

Yes that's right, my first proper summer holiday since 2002! I can't believe I'm actually going (won't believe it till I am lying on the beach, smothered in factor 50) but so totally over excited I cannot wait.

So if you don't hear from me for two weeks, take that as a good sign....

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