Life on dialysis waiting for the call and now life after my transplant

New Start... New Blog...

2009-11-10T12:27:00.000-08:00

Ok... so a bit of a reflective blog...

Its been a whole year since my transplant (this time last year I was still in hospital recovering)... If you have been following this blog for a long time you will have read about my ups, downs, triumphs and TEARS!

You will have read about my struggles with dialysis, life at university, my amazing family, my campaigning and of course my journey to transplant!

However I feel the blog URL http://lifeondialysis--waitingforthecall.blogspot.com/ isn't appropriate anymore! I will always remember my time one dialysis and my time waiting for the call but it just doesn't fit with where I am in my life right now...

So its time for a change.... I have a new URL a new look... so why not pop on over to my brand spanking NEW BLOG!

It will still have all my old postings so you will still be able to look back at them....

A big week...

2009-11-04T07:48:00.000-08:00

It is a busy week ahead... tomorrow I GRADUATE! I can't believe how quick it has come around... in fact I can't believe that I have finished my 3 years at uni! I may have to now grow up a bit!
I've had some lovely presents and cards and even got a cake off my Mum and Dad! You can see pics of them here.

The of course on Saturday it is the Live Life Then Give Life Abseil... me and 42 others (a few people have dropped out) will be abseiling down the 100ft Leasowe Lighthouse! There is still time to sponsor by clicking here! Thanks so much to all those that have sponsored already, I'm so pleased I am able to give something back to the charity that have helped me so much!

So going back in time...
Yesterday was a busy day! I went to get my hair cut (got a really short bob) and coloured (I've gone a really dark dark brown, on the advice of mum not to have red hair on my grad photos!)

I then came home and went to the gym, I think the session went well... I passed on the ball this time as my stomach was still hurting from Sunday!

So I did 20minutes on the treadmill on a higher speed setting, 3 of these minutes were jogging!
I did 20 minutes on the bike and cycled 4.5km.
I did 4 laps of the 200m track walking and 1 lap jogging.

I then went out for a couple of drinks in town with a few of my mates, I was originally not going to have a late one, but I only came in at 2.30am this morning so later than I anticipated!

I also had phone calls from the press office at the Royal Liverpool Hospital who want to do a story about me to coincide with the launch of the campaign, to hopefully appear in the Liverpool Echo in the next few weeks. The Manchester Evening News also contacted me but regarding doing a story about me graduating so that will be in the paper sometime this week!

I think thats about it for now! Wish me luck for tomorrow, I hope I don't trip up on stage.....!!!

The new campaign...

2009-11-02T11:50:00.001-08:00

I was going to write about Save Jess-tival but check out the Live Life Then Give Life blog... as it is a great write up! Everyone had a fab night and all the volunteers did a fab job in making it run so smoothly, the acts all went down well and I had the chance to catch up with the Nick and Mike from The Yeah You's afterwards which was fab, they are so down to earth and signed their album for me! There is also a mini write up here from the guys at Battlefront!

Anyway back to today... firstly, my stomach is soooo sore today, its from all those sit ups on the ball yesterday!

Today is the launch of the new NHSBT campaign...

New research reveals the gap between what we would take and what we are prepared to give. While 96% of us would accept an organ if we needed one, only 27% of us have the joined the NHS Organ Donor Register (ODR).

Many of us (45%) have the best intentions to sign up to the ODR and commit to donate our organs for transplantation after our death, but just haven’t got round to it.
While some people are still unclear about how to register, a significant proportion of us (17%) are ready to act now. A further 19% need to involve their family in the decision. Research also shows a disparity between those who think they’ve already signed up to be an organ donor – 35% as compared with the actual figure of 27% (16.5 million) on the ODR.

The campaign aims to increase significantly the number of people on the ODR, asking what we would do if someone we love needed an organ: if we would accept an organ, shouldn’t we be prepared to give one?

Welcoming the campaign, Health Secretary Andy Burnham said: "Each year, organ donors transform the lives of thousands of people. But despite this, three people die every day while waiting for a transplant. More people are signing up to the Organ Donor Register than ever before, but many more are needed.

"Most of us support organ donation and the overwhelming majority would take an organ if we needed it. I would urge everybody who supports organ donation to show it by signing up to the Organ Donor Register and discussing their wishes with their families."

You may spot TV adverts, hear radio adverts or see it in the press... lets hope all this gets people talking! If you haven't done so already... check out the new website to encourage people to sign up. It is very hard hitting but I think it is what people need to see, this is reality and it is happening to 10,000 people out there RIGHT NOW, and we can all do something about it... people are needlessly dying and we can do something to stop it by Signing up to the Organ donor Register!

I tried to get this message across on a tv interview I did today for Channel M (a Manchester TV Station)... You can watch my interview if you follow that link. The new NHSBT advert was shown during the interview... you can see it by clicking here. It depicts a young man with Cystic Fibrosis detriorating in front of his mum while they are watching tele.

Lets hope the hard hitting nature of it will push people into acting....

2009-11-01T08:39:00.000-08:00

Just got back from the gym and I am really pleased with what I was able to do...

I did:

10 minutes rowing
3 minutes on the bike
25 sit ups on a big inflatable ball
20 reps on a weight thing for my legs
1 minute on a machine similar to a cross trainer (but hurts 10 times more) I will NOT be going on this one again at least not until I am much fitter and can handle it!
20 minutes on the treadmill on a little bit of an incline (with around 2 minutes jogging)
15 minutes on the bike
Once round the 200 metre track!

In other News, NHSBT are launching a new campaign tomorrow, can't really tell you much more about it today but I can say that it will be in the news/media tomorrow! Check out www.savethetinman.com to get an idea of what its going to be about... I will update in the next couple of days on how its all going, I will be doing a couple of radio interviews for BBC Radio 1Xtra and filming for a channel on Sky called Channel M (from Manchester)!

Bye for now....

Getting fit...

2009-10-31T08:31:00.000-07:00

So I joined the gym yesterday! I thought I would use this blog so I can keep a note of what I am doing each time I go to the gym and look back to see how much I improve over the coming months!

Don't worry it won't all be about getting fit, I will keep you up to date on the latest goings on in my normal day to day life too! (which probably isn't that exciting really)

So today I went with my friend Leah and I did 10 minutes on the bike, 20 minutes walking up a little incline on the treadmill, 3 minutes on a cross trainer, 5 more minutes on the bike and then walked 3 times round the 200m track!

So this is the start... I could never have done any of this before so I am really enjoying it, and it feels like I am achieving something...

So wish me luck in getting fit....

A new me...

2009-10-30T02:05:00.000-07:00

Ok so I said I would blog the following day... it's nearly a week later and here it is!

Life does get in the way of blogging sometimes, which is a great thing, if you look back I used to blog every other day - this was because I was stuck in in the evenings most of the time! I am out and about all the time now and although I have looooooaads more to blog about I find it hard to sit down and write it all in one blog post!

So as the title says "A new me..." from this time last year it is a completely new me, a healthier a happier me! I realise for people reading this if you read my last few blogs... I seem to cry ALOT, haha... these are different tears (I blame the drugs) I feel I can be more myself now, I didn't want to cry when I was ill, I wanted to be strong not let things get to me or make my family worry! Now if I cry they know its over something silly and not because I am feeling ill!

So things I have acheived this year (and probably cried at)...

I had my first christmases and birthdays in 4 years without dialysis!
I have been to London numerous times... including one time on my own!
I have spent nights away from home... Birmingham, Huddersfield and friends houses (I didn't want to do this before, in case I was ill)
I ran (and still run) The Gift of Life campaign... I also continue my work as Advocate for Live Life Then Give Life!
I have met some amazing people... new friends, old friends and celebrities this year
I won 2 awards at univeristy, a regional volunteering award and have been shortlisted for a national award.
I have had my story printed in loads of media this year... big highlights GMTV, SKY News and the metro changing its masthead
I got a quote of support from Gordon Brown... and still intend to meet him.
How could I forget my Battlefront programme... a lot of hardwork but I was really pleased with the edit.
I completed my dissertation.... and finished Uni with a 2:1
I went on Holiday to Devon with my family for a week

Normal everyday things that have changed, no dialysis, I can eat and drink what I want, I can walk up the stairs without gettin out of breath, I can get up in the morning and feel great (not dizzy or nauseous), No massive painful needles in my arm every other day, I can be spontaneous and jump in the car knowing that I am not going to feel ill and be stranded wherever I am going. I can spend times with my friends (enjoying the odd cocktail, that I missed out on when they were all partying.) I can run around after my neice! I can go on days out.... I can go shopping without having to sit down every 10minutes, I can do more than one thing in one day! The list is endless... it really is a new me!

This week has been great, I did various little things that I wouldn't have been able to do pre transplant to celebrate a year with IVY (my kidney)... I walked up to the Dream Sculpture (an up hill walk) I went out for a meal with my Mum and Dad... it was an all you can eat chinese buffet... I ate all I could (this wouldn't have been possible before due to nasuea) I also had two drinks... this may not sound like much but those two drinks would have previously had to last all day! I went out for the day to Knowlesly Safari Park...

I also set off a flying lantern in memory of my donor this week... it wasn't plain sailing but we eventually got it in the air and watched it float off for about 10minutes before it disappeared behind some clouds... (Pictures from this week will follow in the next blog)

None of the above would have been possible without the generous gift my donor gave to me and their families wishes to donate their loved ones organs... I will be forever grateful and intend to cherish my gift of life and put it to good use and make them proud. My plans for this month are...

I have joined the gym (SCARY) so I need to go and get some gym gear, so a trip to the Trafford Centre is called for tonight!
A costume halloween party tomorrow
I graduate on the 5th
Its the abseil on the 7th (I will be making final arrangements this week)
The 8th is my Mums Birthday
I will be talking to some media regarding my Vinspired National award nomination.
I will be talking to the media regarding the launch of the new NHS Blood and Transplant campaign to get more people on the Organ Donor Regsiter thanks to a phonecall from my transplant co-ordinator yesterday.
I have a meeting at the Job Centre on the 12th... so who knows I may have a job soon!
I hope to go to huddersfield towards the end of the month
On the 26th November is the awards ceremoney at the Indigo2 in London (I have bought my dress already)

It is a jam packed month with lots of things to look forward to... and again I wouldn't have been able to do half those things on the list before.

No words can express the difference my transplant has made to me and also my friends and family... it is a new me and I hope they like it better than the old one!

I really am loving life and living it to the full...

The day I got the Call...

2009-10-24T01:06:00.000-07:00

This day last year, I received the call that has changed my life. If you have only recently started reading my blog you can read about the events of that day here.

As you can see above...Before that day, my life consisted of at least 9 hours a week being attached to a machine to keep me alive, massive painful needles inserted into my arm to allow my blood to be cleaned. I felt wiped out/faint after dialysis often having really low blood pressure and experiencing crippling cramps. I had to keep to a strict diet and fluid restriction, I was tired and nauseous all the time.

I didn't have much of a social life, and didn't see my friends that much outside of university. I couldn't go to the shops without a sit down every 10minutes, I had lots of time of university ill and basically wouldn't know how I would feel from one day to the next.

Now... I can't even explain the difference.

I have freedom from dialysis, Mondays, Wednesday and Friday nights aren't spent attached to a machine, I don't know how I had time to fit it in before... my time is now spent with my family an friends.

Instead of massive needles in my arms every other day I have blood tests with small needles once a month. My anti rejection drugs keep me alive instead of the dialysis machine. I never have cramps anymore and I never feel faint! I can eat what I want (within reason obviously) and I have no fluid restriction which is amazing... I can go out for a meal and not have to worry what to order or that I will only be allowed one small drink with my meal!

I have a social life, I have seen my friends more this year than probably the past 3 put together! I can just grab my keys and drive to my friends houses without the worry of feeling ill, I can be spontaneous which is an amazing feeling. I can go shopping all day and not have to sit down as much as I previously would... the only reason I will sit down now is because my feet are hurting not that I am worried I will fall down if I don't sit down. I can do more than one thing in one day... this sounds ridiculous but before if I knew I had to go to university one day I would I would not be able to do anything else that day as I knew I would be wiped out so I had to rest before I would do anything and then most likely sleep afterwards.

I don't have the worry of how I will feel from one day to the next... I feel great!

This was me 25th October 2008...

Today I will be thinking of my Donor and their family who gave me the amazing gift... the gift of life... I can't put into words how grateful I am... My life has totally changed and I hope I make them proud with what I am doing... I am thankful everyday.

I will share tomorrow some of the things I have achieved this year that wouldn't have been possible with out my transplant...

Tattoos and Lighthouses...

2009-10-22T09:11:00.000-07:00

It has been a busy few days yet again but I can't seem to put my finger on every single thing I have done... I will do a separate update about the Save Jess-tival as this deserves a whole blog post to itself!

News to tell...

My fabulous brother got an amazing tattoo for me... its not really advisable that I get a tattoo due to being immunosurpressed and the high risk of infection. I am quite disappointed about this, and I think my brother knew so he went and got me one! Its one of the nicest things anyone has ever done for me! He was (and still is fab) when I was ill, phoning me everyday seeing me at leas 3 times a week! I hope he is not reading this again, me getting soppy! It says "Live Life Then Give Life" he decided he would get it whilst he was in hospital, and told noone except his wife! I think him being in hospital gave him a shock and made him realise how fragile life is. It made us all realise how fragile life is. When he showed me I just burst into tears... I still can't actually believe it! Here is a pic of it... Not small is it!? He went the whole hog!

I also went to visit the lighthouse this week, it really is a great place to go abseiling (If you are into that kind of thing) however I won't be looking forward to climbing the 130 steps again to ge to the top! I was gasping for air when I got there, at least next time we will all be taking the easy way down, well maybe not easy but probably quicker! It was a really rainy day.. lets hope the weather is better on the 7th when the abseil takes place!

I was supposed to make my way to Birmingham on the Saturday after Save Jess-tival but I woke up with a cold and my Sister In Law was taken into hospital ill so I wanted to get back to make sure all was ok (thankfully she is out now and on the road to recovery). I was meant to be staying with Aunty Pauline (from the Donor Family Network) and then heading over to Top Banana Studios on the Sunday, for a photoshoot and some filming for the Vinspired awards ceremoney in Novemeber. I was a bit disappointed that I missed it but I wasn't well myself, wanted my own bed and of course wanted to get back for my brother and to make sure my SIL was ok!

My graduation tickets arrived yesterday! Eeeek, it so exciting, I can't actually believe I am graduating... when I was diagnosed with Renal Failure, my whole future was thrown up in the air, I couldn't plan for the next day let alone a few months/years down the line! With the support of my family I have managed to do it and even if I say so myself.. I am proud of it :)

I have been asked to have a graduation profile done, this just involves my university putting out a local press release to the papers etc for outstanding pupils, I'm really honored to be asked!
I appeared in the Warrington Worldwide magazine that I was telling you about in my last post and also appeared in my local paper the Warrington Guardian, you can read the article here.

I'm off to bloods tomorrow morning to check my levels of Tacrolimus, U's and E's, and HB etc amongst other things, this is in preparation for clinic on Monday, its the longest break between clinics so I am hoping all goes well.

I can't believe how fast this year has gone, I will be going to a party this weekend my friends joint 26th and 23rd birthdays! Its sure to be a fab night with lots of great friends in one place... I will however pause to remember my donor as that very day last year I received the phone call to say that a possible kidney had become available. I recieved my Gift of Life the following day (25th October) and so this will be my first transplantiversary, I can't believe I have made it this far... a whole year free of dialysis and a whole year without any overnight stays in hospital!

I am staying over at my friends house after the party and so I will wake up with them all on the day of my transplantiversary... Breakfast is on me to celebrate I think (thats if we can face it)!
I hope I have done my donor proud this year... and will continue to do so next year and the years to come.

Without them none of what I have achieved this year would have been possible...

Smiling on the inside...

2009-10-13T13:11:00.000-07:00

It has been a very busy week this week!

I did an interview on Radio Manchester with Allan Beswick, you can listen again here, I am 2 hours and 12 minutes in. I also did a radio interview for Warringtons WIRE FM, I didn't catch it on air (It was pre-recorded) so don't actually know how I did, that was about me winning the regional Vinspired award and being up for a National one. This also appeared in the online Warrington magazine Warrington Worldwide... you can see it here, it will also appear in the printed version because a photographer came to take my picture for it, which I was pleased about as I don't like the picture on the net, my face looks really steroidy! Its gone down since then (I hope)!

It will be a busy weekend ahead, got the gig on Friday and I will be helping set up and stuff in the day time too which will be fun to catch up with old mates and actually be there in person instead of being stuck up here helping from a distance! Talking of Save Jess-tival you can get some discounts for tickets here if you haven't got them already. Then on Saturday I am hoping to have a walk round London after breakfast with Jess as we are staying in the same hotel which will be lovely! Then apparently I have to go to Birmingham as well at some point this weekend for a pre event for the Vinspired awards... the national finalists have been announced on the website... go down to the shout award and you will see me!

Finally... I want to end on a status I put up today on Facebook and lots of people asked me what it referred to...

♫ This is what it feels like, This is how it feels, now I'm finally smiling on the inside ♫

I have been listening to the Natalie Imbruglia album in preparation to sing along at the Save Jess-tival and the song Glorious came on, I loved this song when it was released but had never actually properly listened to the words... until today! This line in the song reminds me that I am the happiest I have ever been....

Life on dialysis is pretty crap and looking back now I was probably only smiling on the outside, keeping up a brave face and using humour to get through it all... and now like it says I am smiling on the inside and its great! I am doing things I would never have done before... I have been spending lots of time with my friends... staying away from home more often... getting more confident, making new friends! I find myself enjoying every moment... getting emotional at the drop of a hat for happy reasons rather than sad usually, watching a film or when someone does something nice for me! Sad I know... I blame the steroids!

So I am loving life, Smiling inside and out...

Save Jess-tival and an Award!

2009-10-06T09:24:00.000-07:00

YOU CAN NOW BUY YOUR SAVE JESS-TIVAL TICKETS BY Clicking Here.

I really can't wait... I've been trying to do my little bit in helping to organise it, not sure I am being much help but I am trying! Ha Ha! Have received a few raffle prizes so thats a good start and I have sent off 8 letters to companies today in the hope that some of them will offer some raffle prizes too!

In other news I have won a regional Vinspired award and today I also found out that I have been shortlisted for the Vinspired National Award, under the campaigning catagory (It's called the Shout Award.) My university got in touch (before the national bit of news) and said they wanted to write a press release about it to send to local papers, here is a copy if you are interested:

PM-backed Organ Donor campaigner scoops award.

A kidney transplant patient, who spearheaded a high-profile nationwide campaign to boost Organ Donation, is in line to win a prestigious national award recognising the impact of her volunteering.

Holly Shaw, who will graduate in Early Childhood Studies from the University of Chester this November, will travel to the O2 Arena in London next month for the vInspired National Awards, after winning a regional vInspired Award for her prolific campaigning.

Holly, from Westbrook in Warrington, underwent a kidney transplant in October last year, having spent more than three years undergoing regular dialysis while she waited for the phone call that changed her life.

During her time on the transplant waiting list, she set up the Gift of Life campaign to encourage people to sign the Organ Donor register, and from humble beginnings the initiative has sprung to national prominence.

During a national Donor Day earlier this year, Holly appeared on GMTV and Sky News, and even received a personal message of support from Prime Minister, Gordon Brown, as her endeavours prompted 3,200 people to sign up to be Organ Donors. The PM also suggested a meeting at a later date to discuss her campaign further.

Since then, Holly’s campaign has continued. She spent six months with a camera crew making a documentary for Channel 4 as part of the television channel’s Battlefront initiative, and remains an advocate for the Live Life Then Give Life charity, which supports those waiting for transplants and provides post-transplant support.

Holly, said: “I’m very excited about going to the Awards Ceremony in London. I wasn’t expecting to win the regional prize, so this is fantastic news. I started campaigning before my transplant and I’m not going to stop now, it has made a massive difference to my life.

“People take so many things for granted, like being able to eat and drink what they want and going for a day out. Thanks to the generosity of the donor and their family, my life has changed and I can now enjoy these things.

“Organ Donation is something I feel passionately about and I’m thrilled to be able to spread the word. Fortunately my story has a happy ending, but that isn’t always the case due to the shortage of Organ Donors in the UK.

“I was given the gift of life and I’ll always be eternally grateful for that. I’m living life to the full and I’ll never stop campaigning.”

Every year, more than 1,000 people die due to the lack of donor organs for transplant. More than 9,000 people in the UK are currently on the transplant waiting list, so statistically people are more likely to need a transplant than become a donor – only 26% of the population are on the Organ Donor register.

Next month, Holly will celebrate the year since her transplant by taking part in an abseil at Wirral’s Leasowe Lighthouse to raise money for Life Life Then Give Life. To sponsor her, visit www.justgiving.com/LLTGL-abseil

For more information about Holly’s campaign, visit www.thegiftoflife.org.uk

For information about becoming an organ donor, visit www.organdonation.nhs.uk

I don't do what I do for awards or recognition, but it is nice to feel that I am doing some good and someone appreciates me.

STOP PRESS SAVE JESS-TIVAL

2009-10-05T12:37:00.000-07:00

So as well as organising the abseil, I have been doing my bit (a very small bit but still my bit) in helping to organise the Save Jess-tival, thats why things have been so quiet on the blog (this was the good reason I was talking about), it has been a great distraction to the horrible events of last week!

It has been all hush hush but now the cat is out of the bag and we can go ahead and annouce it!

So as taken from the Live Life The Give Life Blog

We are very very excited to announce our upcoming ‘Save Jess-tival', a fantastic night of music and comedy to honour our wonderful Jess and to encourage people to "think about it, talk about it and do something about it" (organ donation that is!)

Our headline acts are: stunning singer Natalie Imbruglia, and Canadian comedian Glenn Wool and Mock the Week favourite Ed Byrne, with more to announce later in the week.

This star-studded fundraiser will place on the evening of Friday October 16th at The Village Underground in Shoreditch, London. Doors open at 7.00pm.

Tickets will be available very soon and are limited so, to make sure you are first in the queue, please register your interest by emailing us at info@savejess.org.uk and we will email you with full booking details as soon as the tickets go live, so you can beat the rush!

For more info on our 'Save Jess' campaign, please visit http://www.savejess.org.uk/

All proceeds go to the Organ Donation Charity Live Life Then Give Life, of which Jess is an Advocate.

Yippeeeeee, it will be a great night, I can't wait to catch up with old friends, meet some new people and mingle with the celebs!

Obviously the main reason being to raise lots of money for a fantastic cause and to encourage more people to think about Organ donation, talk about organ donation and do something about it by joining the Organ Donor Register!

Role Reversal...

2009-10-05T01:39:00.000-07:00

Life takes over and I completely forget about keeping this up to date. Sometimes it takes over with good and happy events, this time that wasn't the case.

I can't believe I've not even blogged about my first night away from home with my friends, it was a road trip to Huddersfield (I had a fab time, and met some great new people)... all that paled into insignificance when I got back and rightly so.

I was greeted back home by my folks (who had just driven past me and decided to turn round and come back) who said that my brother had had an accident off his bike (Push bike I might add) and that they were off to A&E to see him. My first thought was right I'm coming with you, then I thought I've only had 2 hours sleep and so I wouldn't be much use sitting in A&E with them all and by the sounds of it, its only a scratch on his face... little did I know!

Got back home and watched tv tucked under a fleece feeling sorry for myself (hangover) but I couldn't get to sleep for worrying so rang my folks and said right Im coming now what can I bring, I was politely ordered to bring a towel and some PJ's for my bro.

I turned up at the hospital and couldn't help bursting into tears when I saw him (I'm blaming lack of sleep at this point) half of his face was twice the size it should be, it was covered in roadrash and was turning different colours of purple as we sat there! I composed myself after being reassured by everyone that he was ok (had lost consciousness at the scene for a few mins) and all would be well.

To cut along story short, he stayed in over night to be transferred to a different hospital the next day for a routine operation under General Anestetic to clean the road rash out. I didn't go and see him the next day (thought I would let him get on with it, he's not a very good patient at times) but Mum and Dad went and saw him. Afterall it was a routine operation, one that they do 5 times a day or maybe more! He went down to theatre at 9pm.

We were awoken by a phone call at 12.30 that night, you know when you get a phonecall that late its bad news. There were problems waking him up, fluid in the lungs and he had to be put back to sleep and back on a ventilator!

A million and one thoughts ran through my head.... the worst thoughts ever imaginable... I felt so guilty, I am meant to be the ill one, why isnt it me? Why didn't I go and see him, what if something happens to him, I would never forgive myself!

Im not going to go into details of what happened, he spent 2 nights in intensive care and a couple on the ward and then came home. His face is much better than it was (he looks like he has done 10 rounds with Mike Tyson rather than 15 now) he is feeling tired and I think it will take him a while to get over the shock... in fact I think it will take us all a while...

So Role reversal (the name of the blog)... it's usually me in hospital, I'm the poorly one and THATS THE RULES! Ha Ha! It was horrible being on the other end of it, being a visitor, watching someone you love (I hope he isn't reading this) be so poorly and imagining the worst.

Being at the hospital watching him go through that was bad, I now think of how my folks and him watched me for 3 and half years be attached to a machine, for me it was normal and became routine... for them it must have been awful, I am glad it was me that had to go through it, I don't think I could have coped as well as they have done being on the other side of it all.

It makes you realise how fragile life really is and how things can change in a split second... you never know whats round the corner...

I am so thankful to be so happy and healthy and living life to the full!

LLTGL Abseil

2009-09-26T02:22:00.000-07:00

Hey everyone...

My its been a busy week this week, the #savejess campaign really took off and there will be lots of exciting developments over the next couple of weeks, visit www.savejess.org.uk to keep up to date with it all.

In other exciting news I will be taking part in a 100ft abseil to raise money for Live Life Then Give Life, It will take place on 7th Novemeber at Leasowe Lighthouse in the Wirral. Its all very exciting, I have been organising it all and have around 45 people taking part! It should be a great day and hopefully lots of money will be raised for a fantastic cause.

Leasowe Lighthouse

LLTGL were so supportive of me whilst I waited for my transplant and I want to return the favour and celebrate a WHOLE YEAR without dialysis by doing this challenge! If you want to sponsor me please visit the link below, I know first hand that each donation is gratefully received and will be put to fantastic use.

You can also join the Live Life Then Give Life Abseil group on facebook!

Thanks so much for all your support!

Save Jess....

2009-09-23T11:33:00.000-07:00

Please do as the title says! Save Jess and join the Organ Donor Register.

The campaign started on twitter, we started tweeting about Jess with the hashtag so we could track how many people have seen it (#savejess) It has now been seen by over 8000 people in just 50 tweets, and well more than 50tweets were sent so imagine how many in total.

The campaign has a logo, so please change your Facebook/twitter pictures to show your support!

And a brand spanking new website (www.savejess.org.uk) where you can also buy t-shirts!

Emily Thackray has been on GMTV and BBC Kent talking about Jess, I went on City Talk to talk to Pete Price about her... word is spreading fast.

Jess has had support via twitter from

Sarah Brown
Matthew Horne
Jason Manford
David Baddial
Phil Jupitus
Bill Baily
Beverley Knight
Banksy
Sarah Cawood
Jenni Falconer

to name but a few....

There is an article here on Sky News... along with a video here.

Another article on the newswire here, where I get a little mention.

So lets get back to the message... I said this in the previous post:

"I haven't spent enough time getting to know Jess.... I want to take her shopping, I want to laugh till we cry (for the right reasons this time), I want to sample a whole cocktail menu with her... I want to dance till our feet feel like they are going to fall off... But this may never happen."

I don't want to loose a friend before I have had the chance to get to know her more, a twenty year old young girl should NOT be facing death, things can change if more people sign the Organ Donor Register.

Please Save Jess. Thank You.

Worried....

2009-09-20T07:01:00.000-07:00

I, like most people in the transplant community today are worried that we are going to lose a very special young lady, 20 year old Jessica Wales has been waiting for a double lung transplant for over 4 years now, and has had 7 false alarms were the transplant didn't take place for one reason or another. I had the privilege of meeting Jess this year, when she helped me during my filming for the Gift of Life documentary. Little did I know that this may be the only chance of me ever meeting Jess... She text me not long ago asking that when she gets her lungs can she come and stay with me, of course I said yes. I haven't spent enough time getting to know Jess.... I want to take her shopping, I want to laugh till we cry (for the right reasons this time), I want to sample a whole cocktail menu with her... I want to dance till our feet feel like they are going to fall off... But this may never happen.

This was Jess 2 weeks ago...

and this is her today

Jess is on a NIV (a Non Invasive Ventilator) which is helping her to breathe.She is currently in hospital, fighting for every breath. She has 11% lung function and can only breath in the amount of air that is in a coke can. Without a transplant soon... Jess WILL die!

This is the harsh reality of waiting for a transplant, I was one of the lucky ones that was able to be kept alive by dialysis whilst I waited for my second chance. Jess and many others out there don't have this luxury time is ticking... and soon the clock will stop.

This is all because not enough people have signed the Organ Donor Register.

Please visit Live Life Then Give Life to find out more about Jess
Sign the Organ Donor Register
Talk about Organ donation with your family and friends.

Things should be different...

You can help save Jess's life.

Please.

Update...

2009-09-17T11:51:00.000-07:00

Ok so going to try and make this a quick one but I seem to have done a lot recently and got lots to tell you all!

Firstly the blog below says it all but I am just so please that I did well in my results, getting a 2:1 is amazing... I didn't think I would quite be able to do it, what with the transplant, Battlefront and dissertation all happening at once in the third year it was often quite a struggle! I have ordered my graduation gown and Mortarboard and also booked some (very expensive) photographs! My brother and Mum and Dad will be there to see me graduate which will be fantastic, this is happening on 5th November :)

Other stuff that's been going on, I have had lots of lovely days out with Abigail, at local gardens, farms and play barns, she really does make me laugh and she is learning new things every day it really is amazing! Now that she can walk... it takes a lot of energy to run after her when we go out, I really couldn't have done this before... and I am appreciating EVERY second!

In other exciting news.. I got invited to Number 10 Downing Street this week to meet Gordon Brown, sadly it was just too short notice and I was unable to attend! Afterward I found out that my Battlefront mentor Oli Barrett was there, Matt Locke the Channel 4 Education Boss which commissioned Battlefront and made it award winning and finally the fabulous Diversity were there, I was gutted to say the least! It really wasn't feasible though and I was reassured that there will be other opportunities to meet the Prime Minister, which I am very much looking forward to!

My final bit of exciting news is that my swim at a local swimming pool has been given the go ahead, I don't know if I have told you about this (my memory is shocking) I originally fancied doing the Great North Swim (a mile in open water) but I was a bit worried about swimming in a lake and what bugs (as in unhealthy bugs not animal bugs, although I would be worried about them to) would be in the water. So I thought why not do it in a swimming pool instead... and get people to sponsor me! I am unsure as to when this will happen... as there is some other exciting news, which is top secret at the min, which may involve me and Live Life Then Give Life... so will keep you in the loop about that when I can!

Looking forward to lunch tomorrow with a friend and then we're catching up with other friends tomorrow night too!

Then next weekend I am off to Huddersfield for a housewarming party and staying the night there with my friends which should be a laugh...

I really can't believe I am actually talking about all these things in one blog... how far I have come in a year... I used to feel nauseous everyday, had to stick to a strict diet and couldn't socialise with friends... not to mention being tied to a dialysis machine for over 3 hours 3 x a week!

I am going to GRADUATE, I can RUN AROUND after my neice, I have been invited to meet the PRIME MINISTER, I am doing a SPONSORED SWIM and I am catching up on lost opportunities by spending TIME WITH FRIENDS!

I am currently wearing a T-Shirt saying "Living the Life" and that is exactly what I am doing!
I am LIVING THE LIFE and LOVING IT!

I only went and did it....

2009-09-12T01:12:00.001-07:00

I PASSED MY DEGREE WITH A 2:1! YIPEEEEEE!

Shortest blog in the history of the world: all other updates can wait :)

Fundraising for LLTGL

2009-09-09T09:39:00.000-07:00

Fellow advocates Jessica Wales and Louise Lawrence completed great challenges on Sunday to raise money for Live Life Then Give Life.

Jessica is waiting for a double lung transplant and has been for four years, receiving 8 false alarms. She is currently on Oxygen 24 hours a day and She decided, with just 11% lung function she would do the 5k addidas challenge in Hyde Park! Jess can only breathe in the amount of air in a can of coke, yet she wanted to walk 200m out of every Kilometere and thus walking 1 whole Kilometere! I am so pleased to say she did it, and as ever had a smile on her face!

Click here to see a video of Jess's Challenge and details of how to sponsor her.

Louise has had a single lung transplant and she decided she also wanted to take on a challenge and raise funds for LLTGL although she is post transplant she is suffering severe complications, including a form of post transplant cancer and heart failure. Lou decided she would hug a tree for 2 hours continuously, this doesn't sound much, but Lou finds walking difficult so standing for 2 hours was a huge physical and mental challange, but she did it!

Click here to sponsor Louise.

Lou and Jess are such an inspiration, they are brave, corageous and fabulous young ladies and I am totally in awe of their acheivements!

Congratulations girlies, you rock muchly :)

Whilst on the subject of Live Life Then Give Life, I just want to wish them luck for tonight, it is the Charity Times Awards and they have been nominate for best new charity!

Fingers, toes and everything crossed that they win. They do a fabulous job in raising awareness of Organ Donation, supporting people on the waiting list and ultimately saving lives.

I am so pleased and proud that I am part of such an amazing charity and team! Having kidney failure is pretty rubbish, I'm not going to lie, but if it hadn't have happened I wouldn't have met half the people I have today. People that I can now call friends. I am part of a club that no-one really wants to be apart of... but I'm so pleased I am... and I'm never going to leave :)

Abigail is one...

2009-09-08T09:28:00.000-07:00

As the title suggests Abigail is one! Her birthday was on Saturday and we celebrated at her house with family and friends! I can't believe how quick this year has gone... it seems only yesterday that I wrote this blog when we found out she was going to be a girl! Being an Auntie is fab, its hard to imagine life without her now :)

Other things that have happened this week...

I went to see the amazing Tim Minchin, he was soooo funny! It was totally different to anything I have seen before, it was a cross between a concert and a stand up act! He is so clever with his lyrics and he is fantastic on the piano, not to mention his voice! You tube him if you want to find out more... be aware though if you are easily offended!

On Sunday I went out with a couple of my friends and their mum, we went to the trafford centre, watched the Time Travelers wife, which was soooo sad, we all ended up in floods of tears! We then went out for tea at the American Bar and Grill which was delicious!

Today I had a DVD and Duvet day with my friend Sal, we watched Little Miss Sunshine, The Butterfly Effect and Four Weddings and a Funeral! I have to say I was pleasently surprised by the Butterfly Effect, this was my favourite film of the day, its confusing at times but definitely makes you concentrate and think!

Reflective...

2009-09-03T09:44:00.000-07:00

I was reflecting yesterday with my Mum, she was saying how proud she was (whilst I was telling her to shush) of me that I had taken the leap and start going places on my own.

I am pretty proud of myself too (don't want to boast about it though haha)! This time last year, there was no way that I would have gone to the shops on my own, let alone London. Friends that will be reading this will be thinking, ye but you went to university on your own, I did, when I first started I was really nervous about going on my own but as the weeks/months went by and I got to know everyone and they got to know about me (and my illness) I was fine.

This is why I think I didn't want to go out on my own, I always had my fab Mum or Dad with me, I didn't even mind going out with my friends, as they knew about my condition. However going out to the shop on my own I wouldn't like at all, what if I fell ill, collapsed or fainted? I think this was my worst fear, it wasn't because I didn't WANT to go out on my own it was because I was worried about the WHAT IF's of going out on my own.

Now that I am feeling well this fear has gone, I can do what I want, when I want! It's a great feeling... I am not planning on jetting off around the world or moving out of home yet (Sorry Mum and Dad) but I think I am making progress and getting more confident!

I may actually be starting to grow up too... I have enquired about two jobs in the past few days and one is looking promising for an interview... and I am waiting for an application form for the other! It's a scary but exciting prospect...

None of the above of course would have been possible without my wonderful donor and their special family... I remember them every day in everything that I am now doing that was not possible before.

Quick one...

2009-09-02T11:34:00.000-07:00

Just a quick one (I promise), just to say I had a lovely weekend with my Mum and Abigail, lots of playing and giggles!

On the Sunday The guys arrived home from Wembley at about 2, a few of my friends were going to see the victory parade (because Warrington won yay!) and so I joined them. It was a really great atmosphere, they reckon around 50,000 people turned up! As soon as the team arrived at Warrington Town Hall it absolutely chucked it down! We all went home looking like drowned rats, but I was so glad I went.

Other things I've been up to is getting through a massive to do list... everytime I cross something off, I seem to add something new! One thing on my list was to write up some notes for a Department of Health meeting that I have been invited to, I can't attend but can email my notes over for them to see. The Organ Donation Taskforce report, published in January 2008 recommended that ‘Appropriate ways should be identified of personally and publically recognising individual organ donors, where desire. These approaches may include national memorials, local initiatives and personal follow-up to donor families.’ A review is underway to expolre current and proposed initiatives to reconise donor families, and to stimulate new thinking about the most appropriate ideas for taking this recommendation forward. So this is what I have been thinking about... how to recognise donors and their families appropriately! What a hard topic to tackle, I hope I get my message accross ok in my notes.

I've just got back from the hair dressers (I have short red hair again!) I decided to get it done this week as I am going to see Tim Minchin on Friday, then heading into town. Then on Saturday it is Abigail's Birthday and she is having a party, so wanted it nice for then.

So thats it really nothing exciting to report...

Oh I've enquired about 2 jobs, both working with children but completely different things! So will have to update my CV, eeeeekkkk I sound too grown up!

Step forward...

2009-08-28T09:04:00.001-07:00

Another step forward...

I went to the hospital in Liverpool today ON MY OWN! I am not the most confident when it comes to driving on the motorway but have had a few practice runs with the olds and today I took the plunge! I was totally fine (I knew I would be) and got there well on time arriving at 9.30am. I took my ticket in the blood room and took my seat... I then looked up at the bored and realised there was nearly 30 people in front of me! Oh well.. I will remember to take a trashy mag next time! So I twiddled my thumbs and at 10.20 my number got called, bearing in mind I should have taken my tablets at 10! I sat down on the chair and told the phlebotomist that the ward should have sent the forms down so she went off to look for them.. but guess what! They weren't there!

I wasn't impressed to say the least... I had waited for so long and was going to have to go up to the ward to get the forms anyway! Which I did, luckily the lady was nice enough to let me go straight to the front when I got back... I'm sure people just thought I was pushing in.. oh well!

The lady also told me that if it gets near 10am next time that I should just tell them and they can push me to the front so I can take my tablets on time, so thats worth remembering!

I've just had a phonecall from the hospital and my magnesium is low, so I've got to eat lots of veggies (yuck) and red meat! I won't get my tacrolimus levels back till Tuesday and then I am at clinic again on Wednesday to get both the Tac levels checked and the magnesium!

So thats it for today really... did a little but of shopping with my Mum earlier on! We are so looking forward to our weekend with Abigail, she makes me laugh so much! If I hadn't of had my transplant there is no way I would be able to have gone on half the days out with her that I have! Helping my folks look after her keeps us busy and I just wouldn't have been able to do it before... so I am so thankful that I can spend so much time with her, and of course the rest of my family!

So there you go... no stopping me now, Birmingham on my own, train home from Manchester on my own, London on my own and now the Hospital for bloods on my own.... New York 2010? Who knows....

I did it...

2009-08-27T12:44:00.000-07:00

Well as the title suggests, I did it! I went to London all on my own!

I haven't updated the blog in a while... I bet you all thought I got lost in the Big smoke didn't you!

I traveled down there early on the Saturday, catching the 7.20am train from Warrington Bank Quay and arriving at London Euston at 9.10am! ( I usually would still be in bed at this time in on a Saturday morning!) I got myself a taxi from Euston to the hotel as I wasn't confident yet in the thought of traveling on the underground (maybe next time).

I was one of the first to arrive, the conference suite we used was great, Starbucks coffee and tea on tap! It was so fab to finally meet up with the most of the advocates from Live Life Then Give Life (we missed you Jess and Jac) they are all totally great, brave and inspirational people! Emily was there and two of the trustees, Mandy and Pops, me and pops got on great and hit it off straight away (put it this way, at any future events, Emily will probably not sit us next to each other as we giggled too much!)

We brain stormed ideas, role played scenarios, did quiz's, team building and (my favourite bit) sharing our personal stories... the challange was to tell our whole stories in 3 minutes, this was a challange! Everyone's stories are so interesting, unique and moving... there wasn't a dry eye in the house once everyone had finished!

That evening we went out for a meal at an Italian resteraunt, Strada. We got to relax and chat about the usual things such as shopping, jobs and of course THE napkin boobs! (see the picture below) This is a skill I won't forget in a hurry (thanks Lisa) the waiter was great and really got into the spirit of things!

And a more sensible photo....

Later that night me and pops made a deal that she would call into my room at 1.30am so we could watch the x-factor and then go back to sleep - We had a right laugh and eventully pops left me to get to sleep about 3.15am!

The following day Sarah Milne from the Gifts of Life photo project came along to take some pictures of the advocates, here is an example (see below). We worked hard at the weekend but this was balanced out with plenty of fun and laughter! I came away with some new ideas and inspiration for my role as an advocate but most importantly I came away with some fab new friends!

Other things that have happened this week, I went to the cinema to watch the Ugly truth! It was a really funny film and I love the acter Gerarrd Butler who played the main character! He wasn't particularly good in the film PS I love you, but certainly redeemed himself with this film!

Yesterday I did my final piece of uni work (I deferred it because I was still recovering from transaplant) it was a presentation, I had to do an A1 poster on leadership in Early Years settings and a paper to go along with it (1,600 words) to summarise the main points of the presentation! I think it went really well, I tried not to read to much from my notes. I was a bit nervous, as my previous presentation such as campaign ones or LLTGL ones are about me, I can't really go wrong, so this was different I actually had to learn and understand what I was saying, which I did in the end after a few practices before hand!

So thats it, I have finished uni... no for the results, well I know most of them.. the results for this one will mean I will finally have my degree classification and can graduate with my friends in November at Chester cathedral!

Today I spent the day with my folks, Abigail and some friends (and their kids) It was great, we went to a local park, Walton Gardens, had a picnic and generally just chatted whilst the kids amused themselves!
The ladies are going to America (New York) next year and have invited me (and I think my Mum) along with them! Arghhhh! I sooo want to go, for those of you that know me, you will know I want to go on a shopping spree in New York and I would love to Ice-Skate in Central Park! I am hoping to go (will have to save up some pennies) but I also have a wedding to go to next year, at around the same time (Easter) and that is in Ireland, so who knows! But watch this space!

Healthwise forgot to mention my Tacrolimus Levels having been playing up again, I went to clinic on Monday and they didn't seem to concerned but had to go for bloods on Tuesday and I am going again tomorrow, I then have to ring on Monday to see if they need to reduce my Tacrolimus any further (It got reduced last week from 2.5mg twice a day to 2mg twice a day) then if it does I will have to go for 2 more blood tests next week!

Finally (this really is a long blog, I really should start doing lots of short updates instead of massive ones!) Abigail is staying over on Saturday night! It will be her first time sleeping here, My Dad, bro, his wife and her family are off to see the mighty Warrington Wolves compete in the challange cup final at Wembley! So me and Mum are having a fun packed weekend with the littlun! Can't believe she will be 1 a week on Saturday where has that year gone! She can now say a version of Holly and the word of the week is toaster! So cute!

Of course none of the above, or anything I do day to day would be possible with out me receiving my transplant (I celebrated 10 months post transplant this week) I think of my donor often and hope they would be proud of what I am doing with my new lease of life.
I hope and pray people (like Jess) waiting on the transplant list receive their gifts of life soon, so they too can have a second chance at life!

Still here

2009-08-16T10:11:00.000-07:00

I have neglected this blog for long enough... Were any of you readers worried?

I'm pleased to say that my Tacrolimus levels are back to normal, no idea what caused them to go sky high, maybe interactions between tablets. I have a clinic appointment on 24th August so will be getting my levels checked before that date. I will also be speaking to the doc about my Sodium Bicarb tablets, I was lazy recently and wasn't taking as many as I should, but now I am taking the prescribed dose I keep getting bad stomach pains, so I will see if there is an alternative tablet I can take.

So what have I been up to... (short but sweet)

I have been enjoying spending time with friends, having a good old gossip, playing drinking games and having lots of fun in a hot tub!

I have also spoke to a journalist who was keen to hear my story, if I find out anymore about this I will let you know.

I set up a page on Thanksto for the Gift of Life campaign - anything to spread the word of the campaign and the amazing thing that is Organ Donation.

I have been doing Uni Work, as some of you may no when I was recovering from my transplant I had to defer an assignment... luckily it was only one, I completed some of them from home without attending lectures. I have to create an A1 poster on Leadership in Early Childhood settings and a 1600 word essay to back the information up. I am making good progress with this so I am hoping it goes well when I present on the 26th August.

I have also been trying to sell tickets for the Great British Duck Race on behalf of Live Life Then Give Life, to raise money for them, so if you haven't done so already please go and adopt your duck and you could be in with the chance of winning 10,000 pounds!

I had my shoot for the Gifts of Life project! This was lots of fun, Sarah, Wills and I wandered around Manchester while she took pictures of me in various places! Including some eating an Ice-Cream! Can't wait to see them. You can get an account of the shoot here on the Gifts of Life blog. We then had lunch and made our way to the train station, I got the train home on my OWN!

Heres a picture from the shoot - me enjoying my ice-cream, which I couldn't really have before transplant because of my fluid restriction.

I'm getting good at this doing stuff on my own lark, this was good practice for me traveling to London on Saturday for the Live Life Then Give Life's advocate weekend, I am so looking forward to it, although I am still a bit nervous, this will be my furthest trip away from home and I will be staying in the hotel on my own. I know its got to be done and I will wonder what I have been worried about all this time. Watch out you guys... I will be traveling up and down the country soon and will need places to stay!

I think that's about it for now, will try and update on my goings on this week before I head off on Saturday, and I will try to make it a more interesting blog (without bullet points)!

Putting things into perspecitve...

2009-08-02T07:24:00.001-07:00

Just a quick one to say all is well.

Some of you may be Facebook friends and might have noticed over the past few days that I have been keeping you up to date about what has been going on health wise, but for those of you that don't know this is just a quick blog to let you know how things are going.

On Wednesday I went for routine blood tests, to check all the usual things including my Tacrolimus levels, Tacrolimus is one of my imuno-suppressant (anti-rejection) drugs. The normal levels are between 7-10 and I have never really had any major problems regarding this before. To check the Tac levels you have to have your blood taken before you take your morning dose, so for me this is before 10 o clock, this is to check how much tac is left in your system from the dose taken the night (12hours) before.

I had my blood test and never really thought anything of it, nothing has ever come back majorly wrong before, I went out for the day and returned home to an answerphone message from the doctor. I usually don't even bother ringing up for my results (maybe a bit lazy) because I always think that if there is something dodgy happening, someone will ring me although I had never actually thought about it before. My heart sank a bit when I heard something was up, this is my first proper blip since transplant, my tac level was 30! I have heard of people having major shakes, sickness, diarrhoea, and even hallucinations from readings much lower than this so I immediately thought that it was a rogue result.

Phonecalls back and to, to the hospital took place and I was told not to take my Tacrolimus that night and to go for bloods the next morning (again before tac) I kept telling myself that the result must have been a mistake, but it did play on my mind quite a bit. I rang up after 6pm this is when the levels are usually back only to find that the level was still high but had come down a bit and was now 20. At this time my Creatinine was also playing up a bit which was also a bit worrying, well worrying to me anyway, doctors and nurses I spoke to didn't seem concerned so that reassured me a bit. Again I was told not to take my Tacrolimus and to return again the following morning! I went out for the day again and tried not to think about it too much, I rang up after 6pm again and found out that my level was now 10 and back within its normal range, to say I was relieved was an understatement. My creatinine was on its way down as well which was a good sign!

I was told I could start taking my normal dose of Tacrolimus again and I am due in clinic on Monday afternoon anyway. Before my main clinic appointments I have to do a 24 hour urine collection, I can't believe I am actually writing this, but hey this is what you get when you have a kidney transplant, its all talk about wee! I then have to give a small urine sample and also get my blood tests done as well. My tacrolimus levels can't be checked at these clinic appointments as they are in the afternoon and I will have already taken my tablets by then so the levels won't be accurate, this is why I usually go for my levels a couple of days before (hence going on Wednesday). So I will have to have a blood test when I go to clinic on Monday to check my clearence in correlation with my 24hour sample and also may have to go back on Tuesday or sometime next week to check my Tacrolimus levels are back on track and my creatinine has settled down too!

So there you go! I am totally fine, I haven't been feeling ill whatsoever! It has been a bit of a pain having to go back every day for bloods, but its for my own good (and the good of Ivy, My kidney). It just puts things into perspective a bit more, maybe I was taking for granted that everything was going so well, not taking for granted the things I am doing or enjoying, But just taking advantage of feeling so well and healthy again.

It just shows you that things can change so quickly, I am not about to take this chance for granted and will be thankful for every minute.

LDN - Fun, Friends, Food, Fountains, Southbank, Sangria, Smiles and a Carousel!

2009-07-29T09:01:00.000-07:00

Hi all,

On 2th July, I went down to London... my Mum and Dad kindly drove me! I met up with some of the people who helped me out on Donor Day.

Emily - who was (and still is) a massive part of The Gift of Life campaign, Donor day and the Battlefront programme! She received a double lung transplant in January 2007. She is also Vice Chairman of Live Life Then Give Life.

Abby - is Emily's sister and obviously saw her go through waiting for a transplant and the journey afterwards, she ran a donor desk in Epsom on Donor Day.

Tom - is Abby's boyfriend and Emily's friend he helped run the Epsom Donor desk!

Holly - received a kidney transplant from her friend Oli (what an amazing thing to do!) it was the same week I received my kidney transplant and so we are always nattering and comparing notes on what Kasper and Ivy are up to (our kidney's). Her and Oli ran a donor desk in Spitalfields on Donor Day, sadly Oli couldn't make the meet up! Holly is currently undertaking a photography project which you can read about here and if you would like to be part of it, please do get in touch with her!

Freya - is a friend of Abby's and is also from a Donor family.

Molly - ran a donor desk in Cambridgeshire with her mum, she received a small bowel, liver and pancreas transplant in 2006.

The meet up was because there was so much stress surrounding donor day, not to mention the cameras that we didn't get much of a chance to talk and generally catch up!
The meal has been a long time coming but it was worth it, we had lots of fun! We had the meal at Las Iguanas on the Southbank, opposite the Royal Festival Hall. The meal itself was lovely but the chat and banter was better!

After the meal we walked along Southbank because the weather was beautiful and so me and Abby had fun in the fountains! We didn't get too wet though as they went up around us and we stood in the middle. We obviously saw the London eye and the mighty Big Ben, Abby had her fortune told by 2 birds which as interesting and then had a funny picture taken with a street performer!

We all went on the Carousel, which was fab and the horse I went on was called Shaw! How spooky is that! For all the pics from the night... Click Here

Photo's courtesy of Holly Cocker.

Stockley Farm

2009-07-27T12:38:00.000-07:00

We took Abigail to Stockley farm this week!

We started and finished the day out with a trip in a tractor and trailer. Abigail really enjoyed looking at all the animals, she stroked a bunny rabbit, saw the birds of prey, went on the swings, had a picnic and we fed a baby goat together! All in all a really busy day!

Here are a few pics:

Enjoying the tractor ride!

Abigail and Grandad with Stan!

Clapping at the birds of prey

Abigail the clown!

More swings to have fun on!

Feeding the baby goat

A baby goat having a nibble at my cardigan
(at least I hope it was my cardigan)

One of the lambs was called Holly!

Me and my little friend!

Stroking a bunny rabbit!

Me milking a fake cow

Tired out after a long day!

More pics here if you want to see them.

Sun, Sea, Sand and Sheep!

2009-07-25T12:49:00.000-07:00

I can't believe I have not written about my holiday in Devon until now, not updating my blog means I have been having too much fun to sit down and write about it all... all the days have now merged into one and I don't remember what I did on which day so here are the highlights! I'll keep it short and sweet!

We stayed at the Ruda Holiday Park in Croyde Bay and to break the title down, Sun or should I say lack of? There was one really lovely day, in fact my brother and dad got sunburnt! This was the day that the sea and sand happened! Abigails first beach experience, she had a fab time and didn't stop smiling, unless of course she was concentrating on playing with the sand. She paddled in the sea, knocked down sandcastles and generally had lots of fun! Me and Dad went in the sea, it was blummin freezing but refreshing!

This was one of my favourite days, here are a couple of pics from the beach day:

We also went swimming in the pool on site, called Cascades, no pictures of it though as you weren't allowed! This was Abigail's first experience of swimming and she absolutely loved it, I took her down a little slide on my knee and then we went in the jacuzzi, she wasn't my friend for a whole 10 minutes when I accidentally dunked her under!

We ate lots of Ice-Cream as thats what Devon and Cornwall do best, here are a few pics of Abigail eating hers:

Abigail enjoyed the swings which were a minute walk from our log cabin:

Another favourite day of mine was The Big Sheep, we watched a sheep show, sheep shearing, horse whispering and even fed baby lambs! It was a great day out!

Other favourite pictures:
Thats it for now...There are loads more pictures on Facebook, so if you are a friend you will be able to see more there.

LLTGL on ThanksTo.com

2009-07-24T12:25:00.000-07:00

I love ThanksTo.com at the minute! Its a great website which is a new way to thank the people who have really made a difference to your life. It could be a teacher who inspired you to succeed, a doctor who saved you or simply a colleague who makes your day more fun.

I have been in contact with the creators at ThanksTo.com recently, they were intrigued about my message thanking my Donor, you can read it here if you are interested/

They interviewed me about this to be used in the future to advertise thanks to via the web or press, I don't know if they have used it as of yet.

The lady I was in contact with asked me if I would be interested in setting up a page for my Gift of Life Campaign, I am having trouble with my email address at the mo so have not been able to do it. However she also asked me if Live Life Then Give Life would be interested in setting a page up, I got in contact with Emily and Oli and they agreed! I Set it up tonight and if you want to check it out, its here.

So why not go and thank them for all their great work they do in supporting people on the transplant waiting list and promoting Organ Donation!

I'm pleased to say I am off to London tomorrow, I thought I wouldn't be able to go as I have been unwell this week but thankfully I am on the mend and I will be going! I am off to meet up with some of the people who helped me out on Donor Day, it will be great to catch up with out the stress and cameras. I will be sure to blog about it when I get back, and of course I need to blog about my holiday too along with some of my favourite pictures out of the hundreds I took!

We're all going on a summer holiday...

2009-07-10T06:23:00.000-07:00

A quick blog before I finish my packing for my first summer holiday POST TRANSPLANT!

It will also be my first holiday with Abigail... I'm so looking forward to it!

Here are a couple of pictures from the talks at Turton High School

Me and Carol

Me and Carol with the Deputy Head Mrs T Lewyckyj

In other news... I was interviewed this week by ThanksTo, if you haven't heard of it before it is a new website for thanking the people who make a real difference to your life and giving recognition to the people who deserve it most. Not just the ones who get paid the most or the celebrities in the media spotlight, but the ordinary people who are ‘just doing their job’: the teachers who inspire generations of kids to achieve greatness, the doctors who go beyond the call of duty day in and day out, the servicemen who risk their lives for our country.

Let’s also remember the small things that make a big difference: the stranger who carried your bags up the stairs, the neighbour who babysat your cat, the friend who was a shoulder to cry on.

ThanksTo is about recognising these acts of kindness, so even if you remain anonymous, your message will be enjoyed by others and will hopefully put a smile on someone’s face.

Here is the interview:

Summary
This week is National Transplant Week and when we read Holly Shaw’s message: “Eternally Grateful” on www.ThanksTo.com where she thanked her donor for giving her the gift of life, we felt her message just had to be shared.

Since her transplant in 2008, Holly won Channel Four’s Battlefront competition, appeared live on GMTV, Sky News and in a documentary of her experience called The Gift of Life, held a National Donor Day where 3500 people signed up, which is more than 15 times the average daily registration, and been recognised by the prime minister for all her efforts!

We managed to get an interview with Holly and asked her about how she found out she had End Stage Renal Failure, how her life has changed since her transplant, and how ThanksTo helped her to share that experience.

Interview with Holly Shaw

How did you find out about the ThanksTo site?
I found out about ThanksTo via a friend on Facebook who also happens to be my campaign mentor; Oli Barrett. He is a social entrepreneur and has helped me immensely with my campaign, the television documentary and the organisation of Donor Day!

Why did you decide to write a thank you?
I decided to write a thank you as I received the best gift anyone could ever receive: the Gift of Life, through a kidney transplant. I thanked my donor and their family as without them I wouldn't be leading the life I am now.

My life now is barely recognisable from when I was on dialysis; I have got my health back and I am enjoying the freedom from all the machines; I have been to places I have never been to before, experienced things I have never experienced before and met people that I would never have met before. I can do normal everyday things that people take for granted. I can now socialise with my friends, eat and drink what I want; my family have got the old Holly back.

When were you diagnosed and how did you feel after you were told?
When I was 17 years old I was taken ill just after Christmas in 2004, and rushed into hospital. Various blood tests and injections took place and eventually a scan of my kidneys showed that they had shrunk and were no longer doing the job they were supposed to. The doctors told me I had End Stage Renal Failure (ESRF) and that I needed to go on dialysis immediately. From then on, I required dialysis three times a week for three hours at a time and I had a strict fluid restriction of 500mls per day and a special diet. The dialysis itself was restrictive, time-consuming and had unpleasant side-effects including low energy levels, tiring easily and almost constant nausea.

As you can imagine this came as a huge shock to both; me and my family, and my mum and dad went through the tests to see if they could become a donor for me but they weren't suitable. I was on the waiting list for over three years undertaking 600 dialysis sessions in that time and everyday I waited patiently for that phone call saying the transplant was going to take place.

After your transplant, you started running campaigns for organ donors. What have you been doing and have you had many success stories?
I am determined to use my new found freedom to promote the plight of others on the waiting list by encouraging more people to become organ donors. In September 2008 I entered a competition for Channel Four’s new initiative Battlefront - a project aimed at getting young people actively involved in campaigning about a cause in which they believe – and I found out I had won the competition the same week I received my transplant (October 2008).

I am also raising awareness about organ donation through The Gift of Life campaign which aims to promote the benefits of signing up to the Organ Donor Register, and create discussion and debate around the issue. For four months I was followed around by a camera crew from Channel 4 to show how my campaign has developed and to document the need for more Organ Donors, it was then aired in May.

I recently organised a National Donor Day on 7th April 2009, with the help of volunteers and Oli Barrett which were provided through Battlefront. Donor Day was built around asking people to go online and sign the Organ Donor Register and then to promote the fact they had done so via social networking sites such as Facebook and Twitter.

In addition, I coordinated an army of volunteers who were not only willing to man Donor Desks up and down the country but were also willing to talk to people about organ donation and encourage them to sign a registration form. The flagship Donor Desk was situated in Canary Wharf. I also appeared live on GMTV and Sky News to promote Donor Day and wrote a Guardian Online article. For the first time in its history the Metro newspaper changed its masthead to support Donor Day. I also took part in various North West radio interviews throughout that day and the following days.

On the afternoon of Donor Day, the campaign had become the second most re-tweeted tweet on Twitter and over 3500 people had signed up more than 15 times the average daily registration rate. There was also an increase in calls to the Organ Donor Line. I have had support from celebrities such as Connie Fisher, Fay Ripley and the mum of X Factor winner Alexandra Burke who is waiting for a Kidney Transplant. I was also proud that my efforts were recognised by the Prime Minister who released a quote of support for my campaign. In a statement on the No 10 website the Prime Minister said:

“I want to give my support and thanks to Holly Shaw and all those involved in her campaign. Joining the organ donation register is a selfless act of kindness which can save many lives and offer new hope for potentially thousands of families across the country.”

Because this week is National Transplant Week I have done three talks at the same school with different year groups each day informing them about organ donation.

Do you think people are more informed about organ donation now than they were before?
I feel that using social networking sites and the internet is a great way in reaching a large amount of people quickly! It was my main method of getting the word out about my campaign. I used sites such as Bebo, Twitter, Facebook, Blogger, my own website and the Battlefront website.

ThanksTo was a great way to thank the people that were involved with making donor day happen, and to the people who have supported me in my campaign. I keep up to date with the latest Thank You messages on ThanksTo via the website and Twitter. I think it is a great way for people to show their appreciation for kind things people have done for them. What special way to show your kindness than to become an Organ Donor?

ThanksTo allowed me to publicly thank my donor, although I knew they would never read it I wanted to show my appreciation for this precious gift. I intend to cherish it and make the most of every minute! Life is so much brighter now; with so much to look forward to!

I will be eternally grateful to the donor and their family; they will always hold a special place in my heart.

Links
To read Holly’s Thank you message go to:
http://www.thanksto.com/messageView.php?msgId=59cb281d18f7d32baf55f9be89f71af7

Right thats it for now... I will do a massive blog update when I get back, with lots of pictures.

Oh and while I am away please keep Gabrysia in your thoughts, she received a new heart last night after waiting all her life for a transplant, read more about her here! Thoughts and best wishes to her and her family but also the speical donor family who said yes to organ donation at such a tragic time for them.

LLTGL talks

2009-07-09T10:59:00.000-07:00

So this week like I have already said is National Transplant Week... (5th July - 12th July), to mark this Turton High School in Bolton requested that a representative from Live Life Then Give Life to go and speak in assemblies.

Live Life then Give Life asked me, I wasn't too keen on doing it on my own as I am still new to this public speaking lark, so fellow advocate Carol Beckett kindly offered to come with me!

Turton High is effected by Organ Donation itself as sadly two pupils died, both having received transplants. Faith had had a liver transplant but passed away waiting for a new liver, you can read more about her here. Jack received a bone marrow transplant but sadly he too passed away, although it did give him extra time to spend with his family, you can read more about him here. Two brave and inspirational young people.

So Tuesday was Year 8, Wednesday Year 9 and Today Year 7... (will post some pictures soon)

Carol started off by discussing her experiences, here is our talk.

"My name is Carol Beckett and I and my friend Holly Shaw have been asked here today to tell you about our stories of organ donation.

Before I begin, I would like to firstly express my condolences to those friends and relatives of the two pupils who went to this school who very sadly died whilst waiting for a transplant – these pupils were Faith Ong and Jack Coleman

It is due to people like them that I tell my story and the reason why I campaign to promote organ donation.
Both Holly Shaw and I are advocates for the ‘Live Life then Give Life’ charity. This charity promotes awareness about organ donation and helps those people whose lives have been affected by it.

My story began in 2007, when I started to feel tired and I suffered from colds and kidney infections. I had, before this time, been an extremely healthy person – I never had anything wrong with me, I was very active and enjoyed hiking and cycling and I ate a healthy diet.

I kept going back to my GP, but all the blood tests came back as normal. Eventually, I was sent for an ultrasound scan of my abdomen and it was at that point, in September 2007, that I received the news that no one wants to hear. My GP told me there were suspicious masses on my liver – suspected cancer.

I couldn’t understand it – I was only an ordinary married 37 year old with a 2 year old daughter. This sort of thing shouldn’t happen to me?!

Events overtook me – 1 CT scan later confirmed that there were 3 very large tumours on my liver – only 25% of my liver was working normally. I was referred to a specialist unit at Manchester Royal Infirmary. A further MRI scan took place, after which I met with the Consultant Surgeon.

He told me the bad news. He thought it was a fast growing cancer. The tumours were too large to remove. Chemotherapy was not an option. He sent my details to St James Hospital in Leeds to see if I was suitable for a transplant. The answer came back – ‘no’; the reason? The tumours were too large and with this type of fast growing cancer, it would come back in any new liver I was given.

There was only one option – palliative care to slow the pace of the cancer.

Then, I was given a biopsy. This is where a small part of my liver was removed using a needle and then examined under a microscope.

I didn’t know it then, but when I went to hospital for the results of this biopsy, I was at a crossroads in my life. The biopsy showed that the cancer was a very rare slow growing type, not the fast growing sort the Consultants initially thought. I could be re referred to St James in Leeds to see if transplantation was an option now with the change in diagnosis.

I was sceptical, but the answer came back – ‘yes’. I couldn’t believe my luck. The consultant at St James told me ‘there was hope’. This was the first good news I had received.

I was placed on the transplant waiting list in November 2007. Another patient who I had got to know in hospital, Brenda, was placed on the list at the same time.

I was told that day that I had 1 year to live – sounds like a line from a daytime soap – but this was real and they were saying it to me. I was also told it could take between 6 mths to a year to obtain a liver from a dead donor. I was scared I would get too ill before a liver became available – I was also scared that the cancer would spread to other parts of my body whilst I was waiting which would mean I would not be eligible for a transplant.

I knew that people had to wait a long time on transplant lists waiting for an organ, but I didn’t realise how bad the situation was in the U.K.

Other options had to be considered. A new procedure known as a living donor liver transplant had just begun at St James. This is where part of a healthy person’s liver is used and given to the person who needs a transplant. This was possible due to the amazing capacity of the liver to be able to re generate. Within a year the two separate parts of the liver would both grow back to full size.

3 members of my family came forward to be considered. My brother was felt to be the most suitable match. He was told he had up to a 1 in 500 chance of death himself; such was the difficulty of the operation. He still wanted to go ahead.

My brother saved my life in a 10 hour operation which took place on 29th January 2008. We are both now fully recovered and I do not have any recurrent cancer at this moment in time.

Brenda – the patient I met when in hospital – was very sadly taken off the transplant list just after I had had my operation as she became too ill. I will never forget saying goodbye to her in hospital for the last time.

The U.K. has one of the worst records in Europe for people signing up to the organ donor register.

1,000 lives a year of those people waiting for a transplant are lost.

Please remember transplants save lives.

I would like to now hand over to Holly Shaw, who has spearheaded a national campaign to promote organ donation.

As Carol said 1000 people die every year because of the shortage of donor organs in the UK, that is the equivalent to 3 people dying every day!
Another shocking statistic is that 'you are much more likely to need a transplant than to be a donor'

I didn’t know this statistic when I signed up to become a donor when I was 17 when I was filling in my provisional driving license little did I know how true that statistic would become as just a few months later I became very sick all of a sudden and was in desperate need of a kidney transplant myself.

You never think it would happen to you.... like Carol said its more of a story line in a soap! I was just starting to enjoy college and the freedom that came with it!

I thought I had a virus and visited the doctor a few times who agreed with me, but on my final time of visiting the doctor he took my blood pressure and found it was sky high for a person of my age,

I was sent straight to hospital Various tests and scans took place eventually I was told I had kidney failure and needed to go on dialysis immediately, which I would remain on for the foreseeable future until a suitable donor kidney was found for a transplant.

From then on, I required dialysis 3 times a week for 3 hours at a time and As well as dialysis, I had a strict fluid restriction of 500mls per day and a special diet.

The dialysis itself was restrictive, time-consuming and had unpleasant side-effects. My mum and dad went through the tests to see if they could become a donor for me but they weren’t suitable.

I waited patiently for that phone call saying the transplant was going to take place... and eventually after over 3 and ½ years and around 600 dialysis sessions later... thinking it might never happen.... it did!

That was at the end of October last year and now Life since my transplant is barely recognisable from that before kidney failure and dialysis, I have my health back I am enjoying the freedom from dialysis and the fact I can do normal everyday things that people take for granted.

I can now socialise with my friends, eat and drink what I want. Since my transplant I have been places I have never been, experienced things I have never experienced before and met people that I would never have met.

I am determined to use my new found freedom to promote the plight of others on the waiting list by encouraging more people to become organ donors by talking to people like you through my role as an advocate for LLTGL.

I am also one of the campaigners in Channel Four’s new initiative Battlefront - a project aimed at getting young people actively involved in campaigning about a cause in which they believe. Battlefront gave me the platform to get my campaign started online through facebook, twitter and other social networking sites!

I recently organised a national Donor day on April the 7th this year. It was to try and encourage as many people as possible to join the Organ Donor Register in one day! I appeared on the sofa on GMTV, Sky news and various radio stations to try and get the message across! I even had praise from celebrities and The Prime Minister Gordon Brown.

Organ donation is a really difficult subject to discuss, because it involves us thinking and talking about death. However when people are asked would they be willing to donate their organs after their death, 90% of people say yes... yet only 25% of people have actually signed the register. There are 8000 people on the waiting list for some sort of organ or tissue transplant right now.

Mine and Carol’s Lives have been changed through transplants.
Everyone in this room has the potential to save someone’s life by registering as an organ and tissue donor. In fact one person signing the organ donor register can save or transform up to 8 people’s lives

Thank you for listening, we would be only to happy to answer any questions you may have."

We gave stickers out at the end which went down well with the kids, they listened carefully, they were all so polite and had great manners.

The teachers made us feel so welcome and we have been invited to hold a stall at the summer fare on Sunday, sadly I will be on holiday but Carol will be doing this. We left the school with leaflets and information but If you have any questions about Organ Donation or want to know more you will be sure to find the answers here.

I still find it hard to believe how much my life has been transformed because someone out there agreed to Organ Donation. I was lucky I was able to be kept alive by dialysis but for many their time will run out and they won't get the transplant that they urgently need.

8000 people are on the waiting list for a transplant, people like Jessica Wales and Victoria Tremlett for them Organ Donation is a matter of life and death. 1000 people died last year waiting for transplants, people like Faith and Jack are among those statistics

Together we can save lives - please don't let Jess or Victoria become one of the statistics.

Please Sign the Organ Donor Register

Thank you

Engage Magazine

2009-07-08T07:56:00.000-07:00

I am on the front cover of engage!

Here is a snippit from the National Council of Voluntary Organisations...

Getting your message heard in a world that seems to be swamped with communication can be a huge challenge.

As more channels become available through which to transmit your work, concerns, services and campaigns – figuring out which
ones to use, when to use them and how to use them to the greatest effect becomes increasingly difficult.

In this issue, we look at how both individuals and organisations in our sector have found their way through this media maze.

We learn how Holly Shaw’s mastery of social networking helped her create a nationwide campaign for organ donations. While still a teenager, and awaiting a kidney transplant herself, Holly launched an initiative which has seen thousands of people sign up to the NHS donor register, as well as the establishment of a National Donor Day.

If you want to read the full article from the magazine you can click here.

I have been out and about this week giving talks in Turton High School, on Monday it was year 8, today it was year 9 and tomorrows is year 7.
Me and my fellow advocate Carol Beckett were asked by Live Life Then Give Life to visit the school as 3 pupils there had been affected by Organ Donation, Sadly 14 year old Faith had died whilst waiting for a Liver Transplant. A lad called Jack Coleman had also lost his fight after a bone marrow transplant wasn't successful and finally another pupil will need a kidney transplant himself in the future.

I will blog more about the talks tomorrow, just thought I would share the news about Engage!

Live Life Then Give Life have also written about me today, go and take a peek by clicking here.

Pictures from the DFN weekend...

2009-07-07T10:20:00.000-07:00

Here are the pictures I promised you from the Donor Family Network weekend.

These are some memories I will treasure forever.

Me and Oli

Pauline and Wills

Me and Hope

The Rose
...planted in memory of the very special donor's, I wrote a message to my donor which was buried in the soil beneath the rose.

To see some more pictures and Sarah Milne's thoughts on the weekend Click Here.

Some truly inspiring and the most courageous people I have ever met and would have never met would it have not been for their loved ones donating their organs and me receiving my transplant.

National Transplant Week...

2009-07-06T10:01:00.000-07:00

This week is National Transplant Week... (5th July - 12th July)

Do something this week...If you haven't done so already, please please please think about Organ Donation, talk about it with your loved ones and if you feel you want to leave a legacy of life for others after your death please Sign the Organ Donor Register. Raise awareness... Blog about it, tweet it or change your Facebook status... anything to get the word out there!

If you have any questions about Organ Donation or want to know more you will be sure to find the answers here.

My life has completely transformed because someone out there did that exact same thing and their family agreed to Organ Donation, many of my friends lives have been saved due to transplantation, (see my blog roll). But for many their time will run out and they won't get that life changing call and the transplant they so desperately need.

8000 people are on the waiting list for a transplant, people like Jessica Wales and Victoria Tremlett for them Organ Donation is a matter of life and death, transplants save lives... however 1000 people will die, equivalent to 3 people a day because of the massive shortage of donors. Together we can save lives - please don't let Jess or Victoria become one of the statistics.

Sign the Organ Donor Register: Thank you x

Emotional but enjoyable....

2009-07-05T13:06:00.001-07:00

As the title suggests it was an emotional but enjoyable weekend, full of moving stories and inspirational people.

Firstly... I survived the train journey, YAY! I don't know what I was worrying about, in fact I quite enjoyed it. I just sat and read a magazine and the time flew by! I was met at the station by Aunty P's Partner and Daughter and then it was straight to the Donor Family Network Gathering at Tally Ho sports centre. It was a lovely venue, with a kind of conference hall, there were display boards with the pictures and names of donors, the memorial quilts, a stand to encourage peope to become organ donors and a sales stand for the DFN. I met up with familiar faces, Aunty P of course, Sarah Milne, Oli, and Lynne from Donor Day!

There were various workshops throughout the day, people sharing stories, childrens crafts and the Donor Co-ordinator workshop, which was interesting to listen to. The recipients workshop was when the emotions started, I kicked off by reading the Gift of Life poem (which I have bloggged about before) Oli Lewington - Chairman of Live Life Then Give Life gave an amazing talk (as usual) ending on a very emotional note which set lots of people off! Sarah Milne gave a talk about William and his transplant journey and then a heart and two liver recipients spoke very movingly about their journeys too which started the tears for me!

The most emotional part of the day for me (and probably everyone there) was the ceremony of recognition where each donor family who wanted one received a certificate of recognition in memory of their loved one... there was lovely music being played in the background, the names of the donors were read out and as their pictures appeared on the screen. I felt so privileged to to be in a room full of such courageous and inspirational people, I didn't expect to get so emotional. Each family were also given an angel plaque with a small verse on it. We were all then given the option to write on bio-degradable tags a message of remembrance... I thanked my donor for my precious gift of life in my own words, and then all the tags were placed in a flower pot and a rose planted in remembrance of Donors... it was lovely and really symbolic. After which we the recipients were presented with our Angels which was really thoughtful.

After the whole thing was over some people stayed behind for the Donor Family Network Annual General Meeting, to which everyone was invited to. We were invited to share our thoughts and ideas. We then tidied up and headed back to Aunty P's house for an ice-lolly and relax before going out to a lovely Italian restaurant for tea with other people from the day, which I was treated to! :)

It was a late night and we all went straight to bed when we got in. I had a lazy start this morning and then I treated Aunty P, Sarah and the kids to some Bacon butties for lunch in a cafe called Molly's Yum! We then headed over to St Margaret's Church in Great Barr where I was met by my mum and dad who had traveled down for the precious gift service. It was a lovely service and again emotional, me and Sarah were invited with our families to light some candles, the main larger candle was lit by a Donor family (a lady who's husband had donated his organs) we then took a taper a lit it from that candle to light the smaller ones to represent the organs, the larger candle was then put out to symbolise the donors life ending. Me and Will's lit a candle together which was lovely, Hope, Ellie, my Mum, Dad and Sarah also lit candles.

Various readings and poems took place, then Sarah did her address which was beautifully written and really well presented. Then it was my turn! I couldn't even start as I was so emtional from hearing all the readings and Sarah's address! Aunty P had to start and then I took over after I had gained a bit of composure, although she did have to chip in now and again! I think what I was also really aware of was the audience, I had met some of them the day before, seen pictures of their loved ones that had given the gift of life and I almost felt guilty that I was there telling them how great my life was knowing that they had lost someone close to them. Many of them did however come up to me the day before and afterwards to say what a great speech it was and how they felt comforted in seeing and hearing from recipients and how well they were doing. Again we were invited to write messages to put in the box near the altar, my mum and dad wrote their thoughts down too.

I only took a few pictures over the weekend, as I spent lots of time talking to people rather than taking pictures, the ones I did take I will put up tomorrow.

I think I am all cried out now... I don't think anyone could have gone through this weekend without shedding at least one tear. I was made to feel so welcome, its like the club that you don't want to be part of, but once you are you are in, you are in it for life. It was so great to meet the inspirational people all joined by one thing in common. Its such a close nit community, each of the families had to make a courageous decision to donate their loved ones organs and without people like them I certainly wouldn't be leading the life I am now and many of my friends wouldn't even be hear today.

So thank you to the special people that are donors and their amazing families.

The Gift of Life debut talk....

2009-07-03T05:44:00.001-07:00

Yesterday me and my friend Sally got up at the crack of dawn (well 6.30, which is the crack of dawn for students like us!) We were driven to Westhoughton High School in Bolton by the lovely taxi driver - my Dad!

We arrived at the school and were met by the teacher I had spoke to on the phone and had been in contact with via email, she was lovely and made us feel so welcome.

The screen and laptop were already set up when we got into the room and it was starting to fill up with 6th form students!

The Battlefront video was shown, whilst I cringed in a few parts and then it was time to do the presentation! I was really nervous as this was my first experience of talking in public about the campaign. The teacher wanted me to focus on aspects of campaigning as this is the subject they are focusing on whilst doing active citizenship!

I started off talking a bit about me, my story, dialysis and transplant! Then we moved onto talking about the campaign, Donor Day, highs and lows of my campaign and campaigning in general, Sally spoke through some of these points and did a fantastic job! We focused on why I was campaigning about Organ donation, facts and figures etc. Finally we spoke about the keys to a successful campaign... which if you are interested in knowing I believe these are essential:

Information and Knowledge – Do your Research!
Communication
Planning and Organisation
Have clear aims!
Keep the message consistent
Man Power – Get a following
Network – never refuse help and always save contacts!
Attention – Make your campaign stand out!
Commitment
Creativity, Energy, Belief

I finished off with talking about how they could get involved and inviting questions, they were a bit shy to start off with so the teacher chipped in, then they got going, talking about the opt-out debate and giving alcoholics liver transplants, all really interesting stuff!

On the way there I had spotted the road called "Organ Street" so on the way back... not wanting to miss a photo opportunity....

There are a few more pics here.

Everyone made us feel so welcome, the kids listened intently and I was really interested to see about 75% of them had already joined the register... this was because the had had talks on Organ Donation before and so were quite knowledgeable. Of those who weren't on the register the others were thinking about doing it in the future. 3 people signed up there and then and many more took leaflets, pens, and stickers away!

All in all a successful talk!

Off to Birmingham tomorrow ON MY OWN! It's a scary but exciting prospect, I know quite a few people going so I'm sure once I get there (without getting lost, haha) I will be fine. I will be blogging about it next week as well as blogging about my talks at another school in Bolton (different age group and much bigger audience!)

Before I go... the Engage magazine has been issued, I haven't seen the article myself but you can get a sneaky peek of the front cover here, I have emailed to see if I can get hold of a few copies as it is subscription only. If I manage too, I will scan it in so you can all see!

Fundraising for LLTGL

2009-07-01T07:38:00.000-07:00

Ok so I've wanted to do a big event to raise some funds for Live Life Then Give Life for a while now!

I Spoke to a fellow kidney transplant patient yesterday and he said he had taken part in some abseiling for charity! This got me thinking and I am really up for it (Both taking part and organising it)!

So I have been in touch with a company that provide all the equipment and put on the event, they travel up and down the country, the abseil would take place in the North West (Venue To be confirmed - I am looking into some as I write this).

It would involve people paying to abseil (around £20 is the estimate) and then agreeing to raise a certain amount for the charity. This is because it costs an amount of money to put on the event and we want to raise as much as poss for LLTGL. Anyway... I hope this is making some sort of sense!

Basically I am just putting feelers out to see who would be interested. Like I said it would be in the North West... probably Liverpool or Manchester I would hazard a guess!

Get in touch and let me know!

A big step...

2009-06-28T10:43:00.000-07:00

... well not for most people, but for me it is!

On Saturday I will be getting the train down to Birmingham ON MY OWN! This is the first time I will have done this since I first became ill when I was 17! I had done it previously with friends going to Southport, but this will be the first time completely on my own! Which I am nervous about, but it will be good for me to have some independence, and this will be a nice practice for when I get the train down for the LLTGL Advocate away day in August.

I'm traveling down for the Donor Family Network national Donor Family Gathering. You can read more about their latest news on their blog here. The Donor Family Network provides support for the families of those who have died and donated organs and tissue for transplant. The Network also works to promote awareness of organ and tissue donation. The day will consist of workshops, exhibitions, memorial service and the chance to meet the special people that are donor families. I am really looking forward to it, I will be running a stand/generally promoting Live Life Then Give Life with Chairman Oli Lewington. I will also be meeting up with people I haven't seen from Donor Day which I am very much looking forward to including the lovely Pauline Weaver, affectionately known by most of the transplant community as Aunty P, her and her family have kindly offered to put me up for the night and then my Mum and Dad will be traveling down on the Sunday to pick me up and we will attend the thanksgiving service, which I will be doing a reading at, which I am also apprehensive but again its something that I have to get used to doing... talking in front of people... if I am going to make a success of my campaign and fulfil my role as an advocate for Live Life Then Give Life.

Come on, Come on, Come on... TAKE THAT...

2009-06-27T07:59:00.000-07:00

... and party!

That's exactly what we did! Me, Emily, Fiona (bro's wife) and Lisa (Fiona's friend) had a fantastic night. The boys put on a fabulous show with lots of stuff going on, acrobats, trapeze artists, stilt walkers, drummers, dancers, clowns!

There was ticker tape, fire, lots of balloons, rain on the stage, fireworks, an inflatable scary face and even a mechanical elephant! Click here to see some pics!

The tickets were bought a few days after my transplant, my brother had gone online early to get them for me, I made all the nurses incredibly jealous when I told them as they were too busy working to get them! I can't believe that was 8 months ago, I would never have been well enough to go to a concert like that previously, walking from the car to the venue, standing and dancing all night, and then walking from the venue back to the car it just would not have been possible and of course it was on a Friday night, which of course would have been a dialysis night and a complete no-no!

It was the most amazing concert... the best I have ever seen! I really want to go again but I suppose I will just have to wait for the tour DVD to come out! It was well worth the money... I treated myself to a canvas tour bag and a programme as it was my first concert post -transplant (the first of many I hope) already have tickets for Lily Allen in November which I am really looking forward too!

I was sad to see Emily off today, but it won't be long till I am off down to London to catch up with some of Holly's Helpers from Donor Day which will be great!

My month in pictures....

2009-06-25T11:38:00.000-07:00

Today I am 8 months post transplant! I can't believe how quick it has gone! Life is as busy as ever at the mo so thought I would do a round up of this months events in pictures... Enjoy!

Making the most of finishing uni and celebrating my new life!
(I think I was the only one aware that this pic was being taken)

Spending time with friends!

Finding new ways to promote the campaign

These are what keep me alive! My anti-rejection (immunosuppresent drugs) - MMF (CellCept) Tacrolimus (Prograf) and Prednisolone (Steroids)

3 months supply of most of my tablets

London - outside Big Ben

My meeting with the Department for Children Schools and Families (DCSF)

After the meeting - I changed from my high heel shoes to my flats! (Mum thought it would be funny to take a pic!)

We stopped at Stratford-upon-Avon on the way home from London and saw where Shakespeare was born

I have enjoyed many afternoon naps with Abigial - snuggled up on the sofa!

She makes me smile!

and... she gives great cuddles!

Also this month... I received my prizes from University! The McCormick Prize for volunteering and the Citizenship prize for a selfless act! They arrived in the post as I didn't attend the service as I was not allowed to take anyone with me! There is an article here about it and I appeared in my local Warrington Newspaper too! I received 2 lovely certificates and 2 cheques, I'm going to think about what I am going to buy very carefully... I will let you know what I decide!

I also found out that I had passed my dissertation! This means I will definitely be graduating, at one point this year it was suggested to me that I could always give up and go back next year, due to me receiving my transplant, being in hospital and then recovering as well as the campaigning, going to university and doing all the assignments as well as the dissertation! I am so pleased that I carried on, I passed with 61% which doesn't sound a lot but this is a 2:1, I am really chuffed that I will be able to graduate with my friends. My Brother, his Wife and Abigail bought me a balloon, card and some flowers to say congratulations which was so kind of them! I get my results on the 6th, however I still have one assignment to do (as I was in hospital at the time it needed to be handed in), this will be done in August and then I will graduate in November!

That's it for now... I am at a children's party tomorrow morning, Emily is coming up about 2 o'clock and then we are off for a fab night out I'm sure....

Come on, Come on, Come on.... TAKE THAT... and PARTY!

A personal story...

2009-06-23T02:52:00.000-07:00

I always think the best way to reach people and encourage them to think about organ donation is sharing personal stories. These often have the most impact and maybe prompt people to be proactive and actually sign the register. This is why I am sharing this and why the author of this piece of writing wants me to share this too! I only know Rhia Murray through Facebook and my campaign, but she is one very brave and inspirational 17 year old and I think her story portrays this. This was only written yesterday...

"I have Cystic Fibrosis. Many people don't know what this is; but the people who do, will understand what a cruel illness it really is. It is a life-threatening lung condition, which not only affects the lungs, but also the digestive system which results in lots of different medication giving us a very short life expectancy of 31 years.

I however, would not of even made it to my 17th birthday, if it wasn't for the kind genorosity of my donor, who I thank from the bottom of my heart. All my life, up until then I had been suffering. Struggling. Desperate to want to be able to know and feel like what it is like to breathe like a 'normal' person. Just to be able to take a big deep breath in to fill the whole of my lungs!

2007 was when things really started to go downhill - very fast. By 2008; I was on 24hr oxygen and needing a wheelchair to get around. It was an effort to even brush my teeth as I would be literally gasping for air.

Getting up the stairs would be a mission - I would take one step up and have to wait a few minutes before taking another. All in all - it would take around 15 minutes to reach the top, and once there I would then have to sit at the top to catch my breath. It was hell. Pure hell, then the coughing up sputum started...
Me being a right girly girl, I love to wear nice clothes, do my hair and make-up, but I couldn't physically do that, I didn't have the energy and to be honest, I didn't even care what I looked like at that point.

I had planned my own funeral. My life was coming to an end, and I knew it. I made sure I told the people who mean the most to me, that I loved them at every possible chance I could, even though it left me breathless, incase that would be the very last time I did. I dreaded going to sleep at every afternoon nap I had and every night, incase I never woke up. I wasn't ready to die. I was scared.
I was only 16 years old and I had my whole life ahead of me, I had dreams and hopes for the future.

Why me?

July 2008, I was put on the active list for a double-lung transplant. I truely believed I wouldn't get it, but I must have someone up there looking over me, because on 28 August 2008 - I got the call! My life was finally going to change! I would finally have the chance to know what its like to breathe normally.

Three weeks later I was discharged from hospital, still feeling slightly shakey in my legs as I hadn't used them for so long! My face was very chubby due to the anti-rejection tablets called prednisolone I had to take - I hated looking like that!

The main thing was I could BREATHE! It felt AMAZING!

Now, nearly a year on, my life is finally getting back on track. I am starting as a trainee hairdresser as from September - which I have always wanted to do - but couldn't for obvious reasons. I can actually run, dance and talk an actual sentence without it leaving me feeling exhausted! I am starting my driving lessons very soon - which I cannot wait for! I'm even planning the biggest party for my 18th - even though it's next year!

I'm starting to love my life now. One thing I've learnt in life, is NEVER take life for granted and live life to the full.

You never know when it will all end."

So if that doesn't prompt you to sign the register or talk about your wishes with your family then I don't know what will. Transplants really do save lives, this young lady is proof! They transform them too and I am certainly evidence for that! I am really happy and have lots to look forward to and intend to make the most of every second and as above "NEVER take life for granted and live life to the full!" All of which would not be possible if it was not for my donor and their family.

To sign the Organ Donor Register Click here or to find out more about Organ Donation and transplants visit Live Life Then Give Life.

Thanks x

LLTGL and My Sisters Keeper

2009-06-20T05:46:00.000-07:00

As I have talked about previously, On 26th June 2009, My Sister's Keeper is being released in cinemas throughout the UK, the main theme of the film is blood, bone marrow and organ donation. You can watch the trailer for the film here.

As most of you are aware I am a North West advocate for Live Life Then Give Life and they

are encouraging people to write to their local cinemas asking them to display organ donor leaflets in their foyer. Which I have already done, to find out the ones that took me up on this click here.

Could you write to yours? For more information and for tips and support (including a downloadable letter template) click here.

Please spread the word and encourage your friends and family to write to their local cinemas: The more the merrier and the more awareness we raise the more people will think, talk and perhaps be proactive about Organ Donation and sign the register.

Busy Times ahead....

2009-06-19T12:38:00.000-07:00

So my diary is looking pretty chocker in the next coming months! Thought I would keep you in the loop so that you might understand if I neglect my blog!

Tomorrow - I'm going to my friends housewarming BBQ, this should be great fun (and Em if you are reading this, I will remember to blast my stuff in the microwave ;o) This will prob go on into the evening and then it may end up with us all heading to the pubs and clubs in the town centre.

Sunday 21st June - Fathers day! Got my dad one main pres and then some cheeeeeeeeesy presents, can't say too much cos he reads this! We'll probably have a quiet day and then a Sunday lunch. This will also be my brothers first daddy's day! So no doubt Abigail will have bought him some treats!

Tuesday 23rd June - It is my brother and Sister in-law's 2nd wedding anniversary! I can't believe how quick those past two years have gone. I remember being worried if I would be well enough on their wedding day to enjoy being a bridesmaid (thankfully I was)! Again can't say too much about pressies incase they read, but I am sure they will like :o)

Wednesday 24th June - Blood tests at the Royal Liverpool Hospital.

Friday 26th June - In the morning I am off to a childrens party and then in the evening TAKE THAT! wooo! Emily is coming up for the night (I bought her the ticket as a thank you for helping me with the campaign and a birthday present rolled into one)! We are going with my Sis in-law and her friend! I can't wait!

Monday 29th June - Clinic at the Royal Liverpool Hospital. (There are usually delays so this will be a few hours long!)

Thursday 2nd July - My Gift of Life talk with Sally at West Houghton High school in Bolton, in front of 40 year 12 students.

Saturday 4th July - I am off to Birmingham for the Donor Family Network Gathering.

Sunday 5th July - again in Birmingham, I will be attending (and doing a reading at) the Donor Memorial Service.

Tuesday 7th July, Wednesday 8th July, Thursday 9th July - LLTGL talk with fellow advocate Carol Beckett at Turton High School infront of 200 students each day!

Saturday 11th July - My first proper post transplant holiday - a week in Devon, I am so excited! It will be me, my Mum, Dad, Andrew (my Bro), Fiona and Abigail! I would never have thought I would be able to go to Devon, its a 6 hour drive from my house! I used to get travel sick if I spent more than an hour in the car!

Satuday 25th July - I am off down to London, this will be more of a social visit to meet up with Emily and other people that helped out on Donor Day, there wasn't much chance for me to chat to them much so this will be a great opportunity to exchange gossip and maybe throw some campaign ideas around too?!

Saturday 15th August - I am really loooking forward to meeting up with Sarah Milne, from the Gifts of Life photography project. She is going to be photgraphing me in Manchester in the morning and then Team Ethan in Manchester in the afternoon. If you haven't checked out her blog, go do so now: here!

Friday 21st August - Mum and Dad's wedding anniversary!

Saturday 22nd/23rd August - I will be off down to London again for the LLTGL advocate away days! This will be my first opportunity to meet some of my fellow advocates, talk, share our ideas and stories etc.

Monday 24th August - this is the universities assessment week and at some point I will have to do a piece of work that I missed whilst I was in hospital recovering after my transplant! It is a presentation about Leadership in Early Years Settings (have not really looked at it yet, so must do that pretty soon!)

I can't believe it... we will then be onto September and celebrating Abigail's 1st Birthday!

Lots and Lots of great stuff to look forward to, remembering that amongst all that my folks look after Abigail every Monday and Thursday (which I am loving!), I will have to keep pushing the campaign forward, look for a job at some point, but also remember to have some me time to relax, read trashy magazines and watch cheesy soaps!

Time flies when you are having fun...

2009-06-18T12:39:00.000-07:00

Time is absolutely flying by! I don't know where it disappears to and I certainly don't know how I had time to fit in dialysis before!

I can't pin point all the things I've done recently, spent time with friends and family being the main thing that sticks out. It's just so lovely to not have to watch the clock on a Monday, Wednesday and Friday evening, last summer I missed out on sitting out in the garden on the light nights something which I am looking forward to this year!

I love looking back on old blogs to see what I was up to this time last year... and if your wondering... I was kind of stressed as I was on work placement, having to juggle that and dialysis and had to have an operation on my arm! I had an anyerism in my fistula and so I it was necessary for me to have a fistulaplasty! A balloon inserted to enlarge the vein! A very painful but quick procedure.

If your wondering... I still have my fistula, it is still a bit lumpy and it certainly continues to buzz! Fistulas aren't normally removed after transplant as it was completed during a surgical procedure and of course I may need to use it in the future as I am more than likely going to need dialysis again in the future.

Anyway sorry to take you back there (trip down memory lane), its just interesting to see the contrast from my life back then to my life now!

Today I spent the day with my neice and we went to a play barn called crackpots! It was great and Abigail had such fun and was laughing away! This evening I am spending time planning some talks I am doing in July I have 4 planned, 1 for Battlefront and 3 from Live Life Then Give Life. The Battlefront one I will be doing with my good friend Sally, I think it will be interesting for her to talk about what she has learnt from me about Organ donation and Transplantation but also how seeing me go through dialysis and a transplant affected her and her view of how I coped etc. This will be done at a school in Bolton in front of 40 year 12 students. The 3 for LLTGL are all at the same school on consecutive days! This will be in front 200 students each day (3 different year groups) year 8,9 and 10 I think! I will be doing these with a fellow LLTGL advocate Carol Beckett, who you can read more about here.

It will be interesting to see how the different talks go and how they differ as I am doing them with different people (different ages) in front of students from different year groups! Will let you know how my plans come together! I'm really nervous about presenting but it will be good practice for me, and I know that if I want to continue campaigning then it is something I will have to get used to and have to be more confident at!

I have lots of things to look forward to over the next couple of months.... will fill you in next time!

My Sisters Keeper

2009-06-16T03:26:00.001-07:00

Some of you may have read the book, I have and it is one of the best books I have ever read... a real page turner!

I don't want to spoil it for you if you haven't read it, it tells the tale of a loving family where the child is very ill and it deals with the impact that this has on the whole family. It goes on to highlight the difference that bone marrow donation and organ donation can have on an individual , a family and on society.

A film is now being released on 26th June and a friend of mine had the great idea of writing to cinemas to ask them to display leaflets and organ donation registration forms. I emailed all the big companies and wrote 20 letters in total, I have 8 cinemas confirm that they will be willing to do this which is great, and I am hoping for more. I actually got sent through 2 guest passes to go and see any film at one particular cinema as the person I wrote to must have thought I was fundraising, I wrote back to the lady and said that she may have misunderstood and enclosed some leaflets as well, so hopefully she will display these too!

So these are the confirmed ones so far...

Hollywood Cinema
Lowestoft

Hollywood Cinema
Dereham

Hollywood Cinema
Norfolk,

CENTRAL CINEMA
Fakenham,

Hollywood Cinema
Suffolk,

Hollywood Cinema
Norwich

Hollywood Cinema
Ipswich

Cornerhouse
Manchester

And hopefully the cinema that sent me the guest passes will confirm too...

Odeon Cinema
Trafford Centre
Manchester

Will keep you updated!

Meeting with the Department for Children Schools and Families.

2009-06-15T02:59:00.000-07:00

So the update is finally here...

I went down to London last week for the meeting with the DCSF that came about due to my Pitch to Ed Balls afer meeting him in March.

The meeting was at the DCSF headquarters at Sanctuary Buildings, not far from Westminster Abbey! Me, Mum and Dad went along to meet Oli at a cafe near by before the meeting, we all had a quick cuppa and then my folks left to leave me and Oli to get down to business and discuss what we were going to talk about at the meeting.

I had prepared lots of notes regarding what the DCSF had already done to promote Organ Donation and encourage it to be talked about in schools. Such as the introduction of the Register and Be a lifesaver scheme by the Anthony Nolan Trust and the Give and Let Live education packs.

I was disputing tha these were fantastic initiatives, they just need to be more widely available and marketed properly. Teachers aren't using the Give and Let Live project, this may be because there isn't enough communication surrounding it. I looked into this and came across some research done on it, I found out that:

When letters were sent out to schools regarding the Give and Let Live project 250 schools were contacted for a telephone interview, and of these, 63% had no record or recollection of the letter being received. Of the 28% who were aware of the letter every single one (100%) had decided NOT to implement the government's education programme in their school.
The reasons for this were:

1. There are other Government directives which have a higher priority
2. There is no additional funding for the Give And Let Live resource
3. Limited resources within the school prevent them including the Give And Let Live pack
4. They will find it difficult to fit everything into the timetable

Therefore the UK Government needs to review the marketing, communication and support it offers to Head Teachers and schools if they want the Give And Let Live resource to be utilised.

I believe...
LEARNING ABOUT ORGAN, BLOOD AND BONE MARROW DONATION SHOULD BE COMPULSARY IN SCHOOLS, IT SHOULD BE ON THE NATIONAL CURRICULUM!

The reasons for this are..

There are children on the list who will need donations from children
Last years figures show that 28 children died whilst waiting for a transplant
173 children were on the transplant list.
Of the 800 people who donate organs each year, less 25 are children

Registering as a donor is something children can choose to do, even though they are under 18.

Parents would have the final say as to whether their child’s organs were used in the event of their death, but, if they knew that’s what they would have wanted, chances are they would get comfort from knowing they were following their wishes.

This is why it is so vitally important to tell loved ones if you would like to be a donor.

Death is still taboo subject, perhaps this is why teachers are not forthcoming in presenting information on Organ Donation to children/teenagers however If people are educated, given the correct information they can then make an informed decision as to whether they want to donate their organs or not.

There is no reason why teachers should not take advantage of the Give and Let Live project.

It contains all the vital information on Bone Marrow/Organ/ Blood Donation through

• Online Resources and Downloads
• Fact sheets
• Presentations
• Lesson Plans and Activity Sheets
• Interactive and Audio Visual Materials
• Quizzes and Games
• Films
• Real Life Stories

It tells the teachers how to use the packs and implement the information into lessons during Personal Social and Health Education, Science, RE and other Curriculum Links including the use of Information Technology.

It’s user friendly, eye catching and age appropriate.

For the second year running, more than 3,700 secondary schools in the United Kingdom will be offered the free education resource to raise awareness of blood, organ, bone marrow and tissue donation.

But... based on previous research only a small percentage (if any) will take up the opportunity of using the resource. Schools need to be made more aware of it. More substantial marketing and communication is required regarding the Give and Let Live pack i.e. repeating/building on what has already been done or the current method and approach may need to be revised.

So the people me and Oli met with were lovely and really helpful, they are going to put me in touch with various other people that may be able to help me in the future, the main problem in me just going to the meeting and saying right something needs to be done to get the message about the Give and Let Live packs out there was funding. I think the pack is such a useful resource.... So I need to get my thinking cap on and find a way to get the word out there...

Quick update!

2009-06-13T12:03:00.000-07:00

Hello...

Just a quick update, I will do a proper blog at some point tomorrow, but it's safe to say I am very busy and I am having lots of fun... so to sum up my week.

Monday - Me, my Mum and Dad spent the day looking after Abigail, she is growing up so quick and learning something new everyday!

Tuesday - We set off for London early in the morning ready for my meeting at the Department for Children Schools and Families (DCSF) at 2.30. We headed into Westminster so I could catch up with Oli before the meeting. (Updates on this and pictures to follow)

Wednesday - We traveled back from London stopping at Stratford-upon-Avon for a little look around the shops and a spot of lunch.

Thursday - We looked after Abigail all day again, my friend Helen came round to see her and me and Abigail had us all in stitches showing off her new party tricks. That night I went out for tea as it was my friends daughters 3rd birthday so I celebrated with her, her mum and some other friends, I had a carvery and it was gorgeous!

Friday - I went to clinic in the morning to get my tacrolimus (immunosuppresant drug) level checked as they have recently put up my dose to try and get it to an acceptable level. It took 3 attempts to get my blood! 2 in the back of my hand, which I wasn't impressed about as it hurts so much more than in my arm! I now have some lovely bruises on my hands. I had a busy afternoon as I popped into town to pick up a dress that I had ordered from Dorothy Perkins, also picked up some cookies as I was on my way to visit a friend who has broken her elbow! Me and Mum had a nice afternoon chatting to her and I was running around after her 3 year old son. It was then home and a quick bite to eat for me and then headed out (wearing new dress) to a friends house party! It's safe to say I had a great night (from what I can remember) but woke up with a hangover, nothing that a good bacon buttie couldn't fix though!

Today I went to my friends daughters birthday party at a play barn, my friend invited my neice so me, my Mum and my Sis-in Law went along. Abigail had lots of fun and couldn't take her eyes off the other kids, I was also impressed with her latest party trick... as it was one that I had taught her, she can now do the actions to "Round and Round the Garden"

So that was meant to be a quick update but it is clearly longer than I anticipated... Tomorrow I am off to meet Helen for lunch but I will be sure to do a blog at some point with an update on the campaign, latest developments and more about the meeting with the DCSF.

I'm still here!

2009-06-06T08:52:00.000-07:00

Yes it has been a while...

If I don't blog it can only be a good sign, it means I am busy enjoying life and not spending as much time sat in front of the computer!

I'm not going to write to much about it here as it is personal but I wrote to my donor family, it was the hardest letter I have ever had to write but I am so pleased I wrote it and even more so when I found out (from my transplant coordinator) that they had received it and were so grateful for it and wanted to pass on their thanks to me. I am so thankful to them and they are never far away from my thoughts.

On the health front, I went for blood tests on Wednesday I was hoping to hear that they could reduce my steroids but a phonecall that evening showed my Tacrolimus (immunosuppresant drug) levels were too low at 5.4 (It has to be between 6 and 8) so they had to up my dose of this, this now means that I have to wait again for it to be stable before they can reduce my steroids! Everthing else is fine though... I will soon see if its not as I am off to clinic on Monday afternoon! I'm a bit disappointed as this is one of the days we look after my neice and I usually snuggle up with her on the sofa for an afternoon nap! Ah well may have to have a morning one instead!

I am enjoying reading NON university books at the minute! And I am on my 3rd in as many weeks, the first one I read was "The Self Preservation Society" which was ok, not the best book I have read but it was a nice easy read. The second book is the best book I've ever read "My Sister's Keeper" the theme running through it is blood/bone marrow and organ donation! Its full of many moral issues, I won't spoil it here, you will have to read it yourself to find out what happens! If books and reading aren't your thing then you will be pleased to know that film of it is being released on the 26th June, you can see the trailer for it here. I'm really looking forward to watching it and seeing how it differs from the book. A fellow LLTGL advocate came up with the great idea of writing to local cinemas to ask if they would be willing to display organ donation leaflets in their foyers to coincide with the release of the film, so I will be doing that. I am hoping to send out 10 on behalf of LLTGL and 10 on behalf of The Gift of Life.

I have been doing research over the past couple of days for my meeting with the Department for Children Schools and Families. I am nervous but excited about the meeting and I have been reading up on what the DCSF have already put in place to promote organ donation in the past. I hope to praise them on their work so far and suggest what may useful for them in the future and hopefully see how we can work together and support each other in getting the message out about how important organ donation is to the younger generation.

I'm off down to London early on Tuesday morning for a meeting at 2.30, my mentor Oli Barrett is coming with me, so it will be great to see him again. Me and my folks are then hoping to see a show in the west end that night by getting last minute tickets from the box office in Leceister Square. Then back home on the Wednesday... I will be sure to update you next week about how I got on at clinic and how the meeting with the DCSF went.

Campaign posters and Organ Donation in the news...

2009-05-29T14:31:00.000-07:00

Hello!

A few of you have got in touch regarding my meeting with the Department for Children, Schools and Families which is great, if you have any more suggestions or ideas then please do get in contact!

A funny thing happened to me the other day, I was in my local WH Smiths and was at the till and the cashier said to me "Have you been on tele, I recognise your face!" to which I went rather red and said yes. I asked her what she had seen me on, wondering if it was GMTV or the Battlefront programme! She replied with "Oh I don't know, probably some rubbish on Channel 5!" I don't know if she thought I was an actress or something so I just said oh right it was probably channel4 I've been on there recently! Ha Ha! What a strange experience!

Anyway I had a quick play with the pictures from my photoshoot (see previous post) and this is what I came up with....

Not bad for an amateur? Let me know what you think....

There has also been some encouraging information in the news regarding Organ Donation.

Latest NHS figures show that UK Transplants are at a record high! There were 3,504 organ transplants between April 2008 and March 2009, up 8% on the previous 12 months.

There is still a huge amount of work to be done though... The NHS warned the need for donations had "never been greater", with 10,000 people waiting for a transplant.

The figures from NHS Blood and Transplant also show there was a 7% increase in the number of people joining the Organ Donor Register last year, with the total rising from 15.14 million to 16.12 million by the end of March 2009.

There was an increase in the number of deceased organ donors from 809 in 2007-08 to 900 last year and an increase in living organ donation, from 852 in 2007-08 to 944 in 2008-09. To read the full article click here.

However even though this is great news, there are still some recent stories out there which don't show Organ Donation in such a great light such as this article here: Organ Donation: is it ever right not to save a life? It is about a chap who received a new liver after damaging his taking an overdose, he is still depressed and has brain damage due to the overdose requiring him to have 24 hour care. There is often debate about the similar topic of should recovering alcoholics receive liver transplants.

Its a tough one and I can totally see both sides of the argument, I feel everyone has the right to live and the right to a transplant, however I also feel that if you would be willing to receive a transplant then you should be willing to donate your organs after your death and finally I feel that if you are given the Gift of Life then you should treasure it. (note: these are just my own opinions)

Stories like these do jeopardise people on the list waiting for a liver transplant, in fact it affects everyone waiting for a transplant. It puts people signing the Organ Donor Register and yet there are thousands of people that are in dire need and people signing up, need to be reassured of this. Jessica Wales is one of those people who is desperate need of a double lung transplant she has been waiting a staggering 1413 days! If that doesn't spur you on to sign up then I don't know what will!

The Campaign is still going strong...

2009-05-28T11:06:00.000-07:00

Sorry I haven't blogged in a wee while...

I am pleased to say my cold seems to be clearing up and I am back on the campaign trail, trying to move things forward!

The first bit of exciting news is that I received a phone call today from the Department for Children Schools and Families (DCSF) and a meeting has been arranged between their officials, myself and hopefully my mentor (if he can make it)! This follows the pitch I wrote to Ed Balls and the letter I received in response to it. We are going to discuss how they can support me in my campaign... I have a few ideas myself but if you want to share any, you are more than welcome! The meeting is in London on Tuesday 9th June so feedback would be much appreciated before then!

Yesterday I went for a photo shoot for the volunteering magazine called Engage, the photographer Simon is the owner of a vintage clothing shop called Rags to Bitches it was a fun shoot and my campaign mug came in handy as you will be able to see from some of the photo's below.

A quick blog today....

2009-05-22T09:15:00.000-07:00

I've caught a cold... Bad times!

But the kisses were worth it.... Good times!

How could you refuse?

So a couple of days resting and recuperating I think... catching up on trashy celebrity magazines... soaps.... and some reading (that isn't university reading!)

Just when I thought it had all died down...

2009-05-21T10:22:00.001-07:00

... It hasn't! I will explain more, but first you can find my Team Ethan pictures if you click here.

So the campaign is just as strong as ever, which is fantastic news, I was banking on a bit of a break but looks like that isn't much of an option! Well I like to be kept busy so I'm not going to complain (too much!)

So the latest news...

I had a great time at Radio Manchester, everyone there was lovely and the presenter, Heather Stott put me at ease and made me feel so welcome! Here are some of the pics from the day....

And if you missed the interview you can listen to it here, I am about 2hours into the show.

So plans for the campaign in the near future.

Next week the photographer from Engage is coming to take pictures of me for the front page of the magazine.
A french magazine wants to interview me (in English) the magazine goes out to around 50,000 young french people who are learning English.
I want to develop a viral game and video to spread the word amongst young people!
I have a few talks in schools organised in July for LLTGL and one off the back of Battlefront too!

The most exciting news is that I received a letter (via email) today from the Rt Hon Ed Ball's in response to my email! It says....

"Dear Holly
Thank you for your letter following up the recent Battlefront event. It was great to meet with you and the other young people at the event. The passion and enthusiasm that you all expressed for your campaigns was good to see, and I wish you well in your campaigns. I want to take this opportunity to reaffirm the Department's commitment in encouraging young people to learn more about organ donation and the issues involved in this debate.

In this respect i really appreciate your efforts and have asked officials to explore further with you how you believe this Department can support raising awareness of organ donation in education following the joint letter sent out to schools on 28 September 2008. In order to arrange a mutually convenient meeting, please contact....."

I submit my last ever University assignment tomorrow, an end of an era... the time has gone so fast, I can't believe it has been three years! So much has happened over that time, I've made lots of great friends, my brother got married, I became an Auntie, won the Battlefront competition, and received "The Gift of Life"!

When I first started my degree I didn't know if I would be able to complete it through being on dialysis... but I did it and I'm so glad I did, obviously I couldn't have done it without the support of my family! Now I've just got to wait for my results... I'm not too bothered (well ok, I'm lying, I want to do as well as I can) as long as I graduate then I will be proud!

I might have to start thinking of the big wide world now, actually grow up and find my self a job! Don't fret though, I will continue my work with LLTGL, keep spreading the word with The Gift of Life campaign and hopefully meet Gordon Brown and Ed Balls!

So there you go! No signs of slowing down yet....

My Busy Weekend

2009-05-19T03:39:00.000-07:00

I had a lovely weekend (pictures to follow) with Oli and Emily from Live Life Then Give Life!

Emily arrived around 12.30 on Saturday and we spent the afternoon chatting and watched Fridays Battlefront programme! We managed to get "some" work done and the rest of the afternoon was spent playing with my nice or rather watching her run around with her walker (her new party trick)! Emily bought me a gorgeous bracelet (pink of course) for my birthday and her sister Abby bought me a lovely necklace that matches perfectly!

Oli arrived around 5pm with a bottle of wine and flowers in hand for my folks, that went down well and he immediately got an invitation to come back again!!! We did some filming for the LLTGL website about my story, LLTGL and Battlefront! We had a laugh sitting on the grass and chatting, it was a lot less stressful than the filming for the Battlefront Documentary! We finished filming and Emily snuck off upstairs and came back down with her hands behind her back, her and Oli had been chatting in secret code and I had no idea what was going on, she handed me a little box and to my surprise when I opened it... it was a stunning silver necklace with two hearts on it (a big one with a little one dangling on top) on the back of the big heart were the engraved letters LLTGL! I almost cried, I wasn't expecting it at all, it was from all the trustees of the charity for the work I have been doing with Battlefront! Just want to say thank you to them all, I didn't do any of it for a reward, but because I feel so passionate about raising awareness of Organ Donation! I have promised I will wear it to every LLTGL event I attend...

After that we went out for a lovely dinner, everyone enjoyed the carvery and then we had dessert! Jelly and Ice-cream for me and Em, very grown up! We came home and spent the evening chatting, cringing at eurovision and making plans for the following day!

The following day started quite early, we arrived in Manchester around 9.30, this was for the BUPA Great Manchester Run, which Team Ethan were running in aid of Live Life Then Give Life in memory of baby Ethan Collins who lost his fight earlier this month after complications following his liver and bowel transplant. We were there to cheer the whole team on, and to film the event for the website. Ethan's Dad, Stu - despite his grief lead the team round the course and managed to record a time of 65minutes for the 10K run!

We left Manchester (in the pouring rain) and headed back to mine in Warrington for a spot of lunch before leaving again for the evening event in Bolton. This was a fundraising auction consisting of concert tickets, signed memorabilia and theme park tickets etc... The turnout was amazing and the whole evening was so inspirational! The total raised was almost £6000 pounds (with some money still to come in) through their justgiving page for the run and through the auction and raffles at the evening event. Ethan's family are lovely and so strong. To read LLTGL's account of the day with some pictures click here!

A special touch to the evening was a balloon release we wrote messages on them and watched them float up into the sky, an emotional moment for everyone, especially Ethan's parents...

My message read;

"We never met you, but you made a huge impact on us all. A true inspiration! R.I.P Mr Brave. Lots of Love the LLTGL advocates x"

A truly inspirational evening... and a truly inspirational family...

Manchester Evening News and Radio Manchester!

2009-05-15T02:34:00.000-07:00

Yesterday I was in the Warrington Guardian, it was a small article so it is not available online!

Today I am in the Manchester Evening News which can be viewed here! It is great that they have focussed on the praise from Gordon Brown and the fact that the programme was aired yesterday! It is a shame however that they didn't include the link to the Organ Donor Register, they did mention Battlefront so hopefully if people want to find out more and sign up they can do so by visiting the Battlefront website!

So today's Battlefront programme.... I had no Idea that I would be featured so much! It was really well edited again and it was so great to see what the other campaigners got up to behind the scenes! I have had some figures from UK Transplant known now as NHSBT to say that Organ Donor registrations went up to 900 yesterday compared to 400 from Monday - Wednesday! Hopefully I will receive some more figures and get them broken down into how people signed and how many were directly through my campaign! So far 1209 people have signed up directly through my weblink and 389 people have signed up via my registration leaflets (these are still coming in and being processed!)

In other exciting campaign news I have been asked to do a Radio interview with Radio Manchester, in the studio! This will be my first studio interview, my previous ones have been done on the phone so it is quite daunting, but the good thing is that I will be able to take some notes with me so I don't miss any vital information! I am really looking forward to meeting Heather Stott, I will be on air with her around 11.10am on Wednesday 20th and you can listen live here.

So plans for this weekend... Emily and Oli from Live Life Then Give Life are staying for the weekend as we are attending a fundraising event in memory of little Ethan Collins. I will do a blog over the weekend telling you more about brave Ethan's fight and the event that we are attending....

It's all over... but this is just the beginning!

2009-05-14T12:48:00.000-07:00

Gosh, what can I say! Thank you so much for all your supportive comments it means a lot! I am really pleased with the final edit, although my one liner "I am more of a kidney person!" is not my proudest moment! Ha Ha! Also when I said about my appearance on GMTV "I am just going to pretend I am talking to a normal person!" Like Ben Shephard isn't normal? Ha Ha! There was also a still of me that looked like I am eyeing him up! (Not that I wasn't, but I was hoping they wouldn't advertise the fact!)

I also didn't realise that they were filming me when I went into Sky News... this was good as I was more natural on camera but I sounded like a right wous saying "Do I have to go in there (the studio), ON MY OWN?!" Ha Ha! It was the first time I had seen footage of Sky news and GMTV, I didn't like the thought of watching myself on TV but was determined to watch the Battlefront Programme after all the work I had put in, and I am glad I did.

I have already been in touch with my mentor Oli Barrett with some projects I want to focus on so hopefully he will give me some input and introduce me to relevent people!

Thanks to everyone involved in the programme, first and foremost my family, for putting up with my mood swings and stresses over filming and the campaign!

GMTV, Sky News, The Battlefront Team (too many to list) Oli Barrett, Amy Maclaran, Emily Thackray, Live Life Then Give Life, Jessica Wales, Mr Bakran, Oli Foggin, Holly Cocker, Freya Austin, Abby Thackray and All the volunteers at the Photocall, Donor Day and the drinks reception!

Oh and don't forget to tune in same time, same place tomorrow! All the campaigners meet up to discuss their campaigns with each other, they are all inspirational people fighting for worthy causes. We also had the chance to mingle with influential people that may be able to help us in our quests!

I did a speech in front of them including Ed Balls MP and Esther Rantzen, so be sure to watch out for it! (Unless it has been cut, which is an option as Manpreet's and Alex's speeches were much better than mine!)

So the programme may be over... but the campaign doesn't stop, I am already plotting my next steps... and I am hoping to replicate the success of Donor Day in a new and innovative way...

So feel free to get involved, share your thoughts and ideas! I would love to hear them! Whether it be on the Battlefront website or at www.thegiftoflife.org.uk

Thanks again for your support, It's much appreciated! x

Tomorrow, Channel 4, 11.30am

2009-05-13T08:40:00.000-07:00

Well D-Day is nearly here! My Battlefront Programme airs tomorrow!

I can't believe how much support I have had from family, friends and complete strangers it means so much!

I am really nervous about watching tomorrow, I will probably do so behind a cushion! (I still haven't watched the GMTV interview.) I have no idea how it has been edited, what has been cut and what they have kept... I will see it at exactly the same time as everyone else! I'm afraid that I am going to come across as a complete emotional wreck, as I did cry on a few occasions!

I went to Clinic today for blood tests and everyone was so nice, the nurses on the two renal wards are going to club together to get two tv cards to watch me! I put up posters around the hospital about the programme airing and I spoke to Mr Bakran's secretary so she could let him know that the programme will be on. All went well at the clinic, I didn't see a Doctor - as this was just a blood clinic, I did mention to the nurse about the problems with my knee and she did some extra tests so I will find out what this means on Monday when I do see a Doctor at the transplant clinic.

I have been asked to do a few talks recently, public speaking is not my forte so I am not too keen, but I think I might just have to bite the bullet and do it, otherwise I will get nowhere with the campaign! I have been asked to do some talks on organ donation but also a talk to renal patients about dialysis and kidney transplants etc! I wish that when I was first diagnosed this had been an option to me, but as I "Crash landed" as they say (diagnosed over night and straight on dialysis) this just wasn't possible.

I have been trying to get into the media for a last push before the programme, I have managed to get articles in two local newspapers, The Warrington Guardian and The Manchester Evening News, so they will be in tomorrows papers and will hopefully encourage more people to tune in!

Finally I am really chuffed to say that this week I found out I had won the McCormick prize for volunteering (the one I had to reluctantly nominate myself for) but I was also really surprised to find out that I had won another citizenship prize for a selfless act in the community! The prize giving is on the 5th June so I will keep you updated...

So tune in, Tomorrow, Channel 4, 11.30am!

No going back now!

The upsides to transplants and campaigning...

2009-05-12T00:49:00.000-07:00

As I promised here is the more positive blog...

Firstly I want to thank you all so much for the encouraging and supportive comments posted both on here and on my Battlefront page...

Good stuff about my kidney transplant...

I can go to places I couldn't before
I can do things that I couldn't before
I can experience things I have never experienced before

I can dance till my feet hurt rather than until I am worn out and have to go home
I can spend more time with family and friends
I can be spontaneous without having to worry if "THE" phonecall would come
I can plan things in advance knowing I will be well enough to attend
I don't have to stick to a strict Renal Diet
I don't have a fluid restriction
I don't have to have dialysis!!!!
I can take up new hobbies
I don't have constant nausea
I can do normal every day things without getting tired
I can go out more than once in a day (pre transplant I often had to say no to going out in the evening if I knew I was doing something in the day)

This is just a short list, I am sure I will think of more later...
Overall it has totally transformed not only my life but the life of my family!

So the upsides to campaigning....

Learning new skills and improving others
Meeting people that I would never have met
Having the support of volunteers, celebrities, friends, family and strangers alike
Standing up for something I believe in and feel passionate about
Knowing that I am doing something good and helping other people
Being a part of changing peoples lives
Making a small difference in the world

I decided to look back and see what I was doing this time last year, I remembered I was working on placement at a local school but I couldn't for the life of me remember what my health was like... but then... it all came flooding back!

"I worked all day Monday and then went straight to the hospital for dialysis.All was going well until the machine started pumping my blood around. The needles were in but I must have moved my arm slightly and the pain was excruciating. My fistula had blown which means the needle had gone out the other side of my vein resulting in a swelling on my arm which the nurse kindly went and got some ice for. It also meant the next day there was a huge bruise to match the other one the nurse had given me the previous Monday! So my arm is dark purple at the moment and quite sore but hey these things happen. The nurse has advised me to go for a scan of my fistula to make sure its still working ok. My mum is going to ring up on Monday morning to see if there is any chance I can go on Wednesday as I am already heading up to the Royal Liverpool Hospital to see my transplant surgeon! So will keep you posted.

This is my arm below (not a great photo as I took it myself with my left hand) ...

the top bruise is the most recent from last Monday and the bottom bruise is from the Monday before, it's still a bit swollen and quite hard to the touch, so not a pretty sight really... hopefully it will clear up soon!"

I remember not long after this I had to have an operation on my arm.

I may have kidney disease for the rest of my life and I may suffer side effects from the tablets I am now on. But would I swap these and my new life for my life this time last year, back on dialysis with all the restrictions that came with it - NO WAY!

I now have a brighter future, will be able to graduate, get a job, travel and fulfill some of my other dreams thanks to the generosity of my donor. I intend to make them proud in whatever I decide to do with this "Gift" I have been given....

The downsides to transplants and campaigning,...

2009-05-11T11:53:00.001-07:00

When I got myself into campaigning I knew it wasn't going to be all plain sailing I also knew that undergoing a transplant wasn't going to be a piece of cake either!

I usually like to keep this blog positive and upbeat but I am warning you now this will be far from that... in fact it will probably turn into a bit of a moan, but I am hoping it will help me, and maybe some people out there understand a bit better!

Ok so the downsides to campaigning....

It's stressful
Things don't always go your way
Other things move down your list of priorities - I didn't have much me time when the filming took place
Putting yourself out there in the public domain is not always a good thing
People don't always agree with what you are doing
People aren't worried about criticising you personally or your family

Ok so the last one on this list has been bugging me quite a lot recently...

I have had some comments on my Battlefront page which have been negative and in fact hurtful... someone even went far enough to say that they would be disgusted if I had received their sons Kidney when he died. Other comments included that I shouldn't be misleading people about my campaign saying that it is a happy ending when its not, then there are people saying I am obese, and then criticisms of my family for not donating their kidney to me. All of which cheered me up no-end as you can imagine!

So I don't feel the need to explain myself, as someone very close to me would say "This is my life and I choose to love it!" but I am going to explain a bit more about my kidney transplant in the hope it will answer some of the queries above. In simple terms...

Yes, I have had a kidney transplant
No, this isn't a cure
Yes, I will always have Kidney disease
Yes, I will probably need to go on dialysis again in the future
Yes, If I am lucky I may receive another transplant.
Yes, My parents both got tested to become donors for me, they weren't suitable due to medical reasons

Yes, the anti-rejection tablets do have side effects
Yes, I suffer with some side effects...

I am loosing some of my hair (it is getting thinner by the day)
I often get shaky hands
I get burning sensations in my hands and feet
I sometimes have night sweats
I still can't walk a great distances as one of the tablets I am on causes my knee to swell
I have a moonface - due to the steroids
The anti rejection drugs mean I am at a higher risk of cancer - specifically skin cancer.

Yes, I have put on weight - I am the first to admit this
Yes, this is not all down to the steroids - But they do play a part.
Yes, I have been over indulging, but wouldn't you if you had to stick to a strict renal diet for four years?
No, I don't intend to do this forever.
Yes, I intend to get fit and eat more healthily, not because of the nasty comments, but for me and the longevity of my kidney!
No, I have never been, and never will be stick thin... DEAL WITH IT

Yes, this kidney transplant has transformed my life and the life of my family
Yes, I think this is a happy ending, I am the happiest I have been in ages - I am grateful for every single day I have been given off dialysis, even if the transplant only lasts a few years.
No, I don't intend to dwell on this any longer than it takes me to write this blog
Yes, The side effects of the tablets are a small price to pay for a happy and healthy future free from dialysis and the restrictions that come with it.

Some peoples comments do put doubts in my mind about whether I am doing the right thing putting my self out there for criticism, but I passionately believe in this cause and I am not going to let it stop me.

This is my second chance, I am going to live life to the full, I am determined to use my new found freedom to raise awareness of Organ Donation, the need for more organ donors and promote the plight of the people still on the transplant waiting list...

Tomorrows blog will be a more postivie one, I promise.... I intend to make it a complete opposite one to this one...

The benefits of transplantation and the positive aspects of campaigning... of which I can assure you there are many!

Battlefront on TV!

2009-05-10T03:15:00.000-07:00

So Battlefront is airing tomorrow! A Documentary series following young people campaigning for issues they feel strongly about. Monday - Friday from 11.30am till 12.00 on Channel 4.

Here is the line up...

Monday 11th May
Alexander Rose - STOP gun and knife crime

Solve
This
Ongoing
Problem

Alexander was moved to do something positive out of his friends death and is encouraging young people to STOP carrying guns and knives and think about what else is out there instead of joining gangs.

Tuesday 12th May
Becky and Siobhan - Make a big change with your small change

Giving just 15p a day could change someone's life forever, Becky and Siobhan have spent time in Kenya and have seen children desperate for a chance in life, an education, but can't afford it. The girls are encouraging people to save their pennies and make a big difference both here and abroad.

Wednesday 13th May
James Greenhalgh - Down with Tuition Fees

James is fighting to abolish university fees so students can have free higher education. He believes that young people shouldn't be starting out in the world of employment owing money, or be put off going to university because of the fees. He suggests it should be free for everyone regardless of social class, background... regardless of anything!

Thursday 14th May - ME!
Holly Shaw - The Gift of Life

Follow me as I campaign for more people to join the organ donor register after my life-changing kidney transplant.

See me as I meet people who will help me in my campaign and as I organise a National Donor Day! Join the event on facebook here, to show your support!

Friday 15th May
All the campaigners meet up to discuss their campaigns with each other, they are all inspirational people fighting for worthy causes. We also had the chance to mingle with influential people that may be able to help us in our quests!
I did a speech in front of them including Ed Balls MP and Esther Rantzen, so be sure to watch out for it!

So there you go Monday - Friday this coming week, 11.30am on Channel 4!

Ireland!

2009-05-08T11:58:00.000-07:00

Hello!

Got here safe and sound, plane was on time and it only took around 40 minutes! I am staying with my Auntie D (Mum's Sister) in Armagh and have been catching up with family!

My Uncle and Auntie (Mum's bro and his wife) are over in Ireland from Australia so this was the main reason for our visit, to see them before they head back down under! I have also seen my Mum's Auntie and Cousin and hope to catch up with other friends and relatives while we are here! We had a lovely lunch today and even had a birthday cake for me and my Auntie D as our birthdays are only 6 days apart!

Its a whirlwind trip and time is going so fast, but its good to know that it won't be long before we come back because there are no restrictions now! Everyone has been commenting on how well I look which is great!

I thought I was going to have to be doing university work while I was here but I got some great news that the submitting date for the assignment has been extended, so work is on hold so I can enjoy my time here to the full!

I will leave you some pictures of my time so far....

My Case (pink of course) ready to go on it's first trip POST transplant - the last time I used it was in hospital after my transplant

Mum @ Liverpool Airport (she won't be impressed that I have posted this)

Me and Dad doing our classic arms reach photo's - I was jealous because my face looks fatter than his so we had a second attempt (see below)

What do you think? haha!

Leaving Liverpool - Can you tell which airline we flew with?

Arriving in Ireland

Mum and her Brother (My Uncle John)

We went out for lunch- this is my dessert, YUM!

Uncle John - Checking out his Facebook

Me and Dad

Battlefront Newsletter!

2009-05-07T14:15:00.001-07:00

HOLLY'S DONOR DAY SUCCESS

Holly Shaw, our 'Gift Of Life' campaigner, put on her national Donor Day on 7 April, to get as many people as possible to sign up to the NHS Organ Donor Register. Aided by Battlefront mentors, Oli Barrett and Amy MacLaren, Holly and her supporters set up donor desks across the country and spread the word via Twitter, Bebo, Facbook and more. Their efforts led to nearly 3500 sign ups on just that day, and Holly's campaign URL became the second most re-tweeted tweet in the whole world! Holly was featured on GMTV and on Sky News. She also managed to persuade the Metro to change their masthead for the day, by putting a heart into the "O" of the title.

The icing on the cake came at the end of the day when Holly got a phone call from Number 10, where Gordon Brown himself congratulated her on the amazing job she is doing on behalf of organ donation charities. In fact the number 10 website now has a direct link to Holly's Battlefront page. Holly also has a new logo and website, thegiftoflife.org.uk , which she launched in time for her donor day that was created for her by Airlock and is another great platform for her campaign.

Birthday!

2009-05-06T13:18:00.000-07:00

A quick blog to thank you all for your lovely birthday messages, wishes, cards and gifts! I have been thoroughly spoilt!

I got a gorgeous Thomas Sabo charm bracelet (with 3 charms) off my Mum and Dad, vouchers, money, perfume, craft stuff, chocolates, flowers and other lovely bits and bobs!

I celebrated with my friends yesterday evening with another night of Drinking and Dancing! My head was a bit sore this morning.... and so were my feet! I had a fabulous night though as you can tell from the pictures...

Me and Sally

Me and Luke

Me and Carrie

Me and Nic

Me and Hanne

Luke, Me and Marcus

Tonight I went out for tea with the family and some friends...

Me and My Brother Andy

I am also busy packing for my trip away to Ireland, I am so lucking forward to it... my Uncle and Auntie will be over from Australia so it will be great to see them again and see other family and friends! Sadly it won't all be fun, fun, fun... I have a university assignment in for next Thursday so the trusty laptop will be coming with me and I will be working on it while I am away!

Busy Week..

2009-05-05T02:31:00.000-07:00

Busy week ahead...

Today I am having some friends round for drinks and a takeaway before we head out into town to celebrate my first post-transplant birthday! I bought a new dress yesterday, bright pink (of course)... and my Mum bought me some gorgeous pink jewelry to go with it!

Wednesday, My actual birthday will just be a quiet one (because I will probably still be recovering) and then out for tea with the family, my brother, his wife and my little niece!

Finally Thursday... I go away to Ireland, my first flight post transplant!!! My Mum is originally from Ireland so she still has some family and friends there, it will be great to see them and also interesting for them to see the difference in me!

So a lot of firsts to look forward to this week! Of course which wouldn't be possible if it weren't for my donor and their family. They are never far from my thoughts....

Dissertation, Drinks and Dancing!

2009-05-02T09:31:00.000-07:00

So the dissertation is done... Finally! All 10,007 words of it bound and submitted, what a relief! There were a few moments when I never thought I would actually finish it on time, due to my health and campaigning, but thankfully it all came together and I can forget about it now.... well until the results anyway! I'm not overly bothered what mark I get, just as long as I pass!

If you are interested here is the abstract from it...

This dissertation investigated what key strategies are in place within a reception setting to promote parental partnerships. Information was gathered from both parents and practitioners within the setting. The information from the parents was collected using questionnaires and the practitioner’s views were gained using a semi-structured interview therefore undertaking a mixed paradigmatic approach. Literature was reviewed surrounding the key area of focus of parental partnership which was found to be necessary for the well being, education and holistic care of the child.

The Early Years Foundation Stage DfES (2007) is essential in the reception setting and is a useful tool for practitioners to follow to ensure effective partnerships with parents. The results of this research show that there are various strategies in place within the setting to encourage parents’ participation in their child’s education and both parents and practitioners feel that successful partnership is being achieved within the provision.

Moving away from the boring stuff...We went out last night to celebrate! 8 of us went out for dinner at a lovely restaurant called MoJo's, the meal was great as you can see from the pictures... and the cocktails weren't bad either!

Dinner @ MoJo's

Raspmopolotins - Yum

We then went onto a club called The Lounge where we hired the downstairs venue and met up with people from our course and other mutual friends that were invited!

The Lounge

We then walked into Warrington town centre for more drinks and dancing!

Towards the end of a night... having a sit down becuase of sore feet (too much dancing) this is strange as pre-transplant I would always feel tired before my feet hurt, but it is the other way round now!

It was a great night.... I am feeling slightly delicate today though maybe one to many cocktails (or 5 too many)! I don't intend to make it a habit, I am just catching up for lost time....

Taxi Home - 2.15am

Gifts of Life Photo Project...

2009-04-29T13:40:00.000-07:00

Although the project name is similar this is unrelated to my campaign... I just think it is a great idea and thought this blog would be a great way of getting the word out there!

Gifts of Life is an exciting new photographic project by Sarah Milne in partnership with the national organ donation awareness charity 'Live Life Then Give Life'.

The work captures people who are waiting for or who have received a gift of life in the form of a transplant. It also explores the impact on those left behind when someone, sadly, does not receive their gift in time to save their life. Sarah is Mum to William who, at the age of four, received a small bowel transplant in November 2008.

The work will be exhibited in the Menier Gallery, London from December 14th - 19th 2009 before going on tour around the UK in 2010 Please keep revisiting this site and the blog for the latest news.

Gifts of Life also incorporates a set of photos by the photographer Holly Cocker, another photographer (and one of Holly's Helpers) who received her gift of a kidney from best friend Oli. Holly was diagnosed with ESRF (end stage renal failure) in 2003, and waited five long years on the transplant list for a new kidney before Oli came forward and in a pure act of selflessness donated his kidney to her in October 2008. Holly will be doing a series of portraits of live donors and their recipients to capture the extraordinary relationship and strong bond that exists between them.

I am going to be getting involved in the project myself by having my picture taken by Sarah and hopefully will get a chance to visit the gallery and see the exhibition.

So if you want to get involved too, there are several ways you can:

Have you received a transplant and would be willing to be photographed?
Do you know of any venues that would be able to hold an exhibition?
Or could you promote the project/exhibition?

Then get in touch with Holly and Sarah at the website here or check out the latest news on the project on its blog.

2009-04-28T11:57:00.000-07:00

So this week I had a couple of telephone interviews...

One was for a voluntary magazine called Engage, they basically wanted to know all about my campaign and how I used new media to promote it. They want me to be on the front cover too!

So if you don't know already I thought I would pass on all my social networking links here:

The Gift of Life Website
Battlefront Page
Facebook Group
Bebo
Myspace
Twitter

These were all great ways of getting the word out there about Donor Day and encouraged many people to donate their status's to the campaign and change their profile pics!

Lucy at Engage was also interested in how I wanted to carry on with my campaign... the thought hadn't even crossed my mind as I was busy concentrating on my dissertation!
Obviously I want the campaign to continue, I want to keep spreading the word and it is something I feel passionate about! She was wondering if I wanted to turn it into a charity... It is something I will have to think about and consider in the future... is it a lot to handle on my own? (I know I have great support from Volunteers and LLTGL) Would it be better as a campaign or a charity? What are the implications? Lots of questions and lots of thinking to do....

The other interview was with a man from my university discussing the prize (that I nominated myself for, after some persuasion) He again just wanted to know about the campaign and how it came about, but focusing more on what skills I have learnt and how this will transfer to my career in the future! I will know If I have won the prize in the next few weeks... I'll keep you updated!

Reflection...

2009-04-22T09:47:00.000-07:00

I have been asked to write about my time working on the Battlefront Project, easier said than done. I have done so many great things, met so many amazing people and feel like I have achieved a lot. It has been the best experience of my life there have been tears and laughter and I have learnt lots about Organ Donation as well as myself!

The skills I have learnt...

Confidence
Better Communication
Management and Organisation skills
Giving speeches and presenting
How to write a press release/diary note/photocall notice
To liase with the Media and do interviews

The Highlights of the campaign so far...

Winning the competition
Meeting my mentors Oli Barrett and Amy Maclaren (inspirational people)
Going up and down to London and spending time with Emily T
Having the support of Holly's Helpers
Meeting Jess Wales
Interviewing the surgeon who performed my transplant
Writing to Gordon Brown and receiving a letter from his secretary in reply
Meeting my fellow Battlefront campaigners
Speaking in front of Rt Hon Ed Balls
Having the support of Celebrities - Alexandra Burke, Nina Wadia and Connie Fisher
Working with the design company Dave - who came up with 2 minute hero's (Be a hero, Put the Kettle on!)
Having a successful photo call with support from Holly's Helpers, Melissa Bell and Fay Ripley
Putting on my Donor Day and getting thousands of sign-ups to the NHS Organ Donor Register
The metro changing their masthead in support of Donor Day
Being on GMTV
Doing various radio interviews and appearing in various newspapers
Getting words of support from Gordon Brown on the number 10 website, here: http://www.number10.gov.uk/Page18965
The Prime Minister asking to meet me!
My Campaign being the second most re-tweeted tweet in the world on April 7th!

When I write it like that I don't know how I managed to fit it all in, not forgetting clinic appointments, university lectures as well as the assignments including the dissertation!

So what next I hear you say?

A little break to finish my dissertation and my final assignment
My first birthday celebration post-transplant (there may be a few alcoholic bevarages being consumed!)
A front cover and interview with voluntary magazine - Engage
Hopefully an article in the next Kidney Life magazine
An interview for the McCormick prize at university
Hopefully continuing my work with Oli Barrett and Amy Maclaren
Continue working with Emily and Holly's Helpers
Hopefully Recruiting more Holly's Helpers
Keep spreading the word about Organ Donation
Utilising Social Networking sites
Keeping my website up to date with all the latest developments! (www.thegiftoflife.org.uk)
Maybe getting a viral game/video out in the world wide web to promote Organ Donation among young people
Collecting lots of experiences of Organ Donation - a particular area I want to explore is a Donor Family perspective
Planning the next big event/stunt that will hopefully be as successful as Donor Day

Not forgetting that all this would not have been possible pre-transplant, it is thanks to my amazing donor and their family that I am able to do this, hopefully I will make them proud.

I am also doing it for the people that have sadly lost their fight because their wait was too long and to give hope to the 8000 people that are currently on the waiting list for a transplant.

Click on the link below to see montage of my Battlefront journey and why I am going to keep campaigning, I think it says it all....

My Battlefront Journey!

My Pitch to Rt Hon Ed Balls MP

2009-04-21T14:04:00.000-07:00

I am 21 years old and this year underwent a successful kidney transplant. Today in Britain, over 7,500 people are waiting for an organ donor. 1000 will die next year. Although 90% of Brits support organ donation, just 25% have signed the Organ Donor Register. One of the keys to solving this is through the education of the children and young people of Britain.

The Gift of Life campaign will encourage people to think and talk about Organ Donation. Through education, the campaign will raise awareness of Organ Donation, dispel common myths and encourage more people to sign up to the Organ Donor Register: potentially saving and transforming lives. (www.thegiftoflife.org.uk)
As part of my campaign I created a national awareness day, Donor Day, on Tuesday 7th April. It was a great success and I have been informed by NHS Blood and Transplant that on that particular day 15 times more people than normal signed up to the donor register. I also received the backing of the Prime Minister and have been invited to meet with him. (http://www.number10.gov.uk/Page18965)

If I ( along with the help of volunteers, the Live Life Then Give Life charity and my mentors) was able to do this in one day with a small budget, imagine what might be possible with more young people involved?

I know that you and the Department for Children Schools and Families have been involved with getting the Give and Let Live project into schools and have sent letters out to schools about this project. However I know that 250 schools were contacted for a telephone interview, and of these, 63% had no record or recollection of the letter being received. Of the 28% who were aware of the letter every single one (100%) had decided NOT to implement the government's education programme in their school.
What I think needs to happen...

•There needs to be more Education and awareness of Organ Donation as a whole.

•The programme needs to be taught in schools for example during citizenship or Personal and Social Education, via the Give and Let Live project or a speaker’s project.

•More funding is required to advertise Organ Donation – perhaps on similar lines to the advertisements for the donation of blood.

•More funding is required in the area of Organ Donation and a better use of resources is needed so that more transplants take place – i.e more donor coordinators should be employed throughout the country.

•The UK Transplant website needs upgrading so it is more user friendly and attractive to younger people. Both cosmetic changes and other changes need to be made so that it is easier to sign up and to pass on the message to others to encourage them to sign up too.

•The power of the web and of peer-to-peer recommendation needs to be harnessed and we have offers from leading technologists to help explore this.

I have received the support of organ donors and recipients, the national media, celebrities and even the Prime Minister. My goal is to work alongside DCSF to get Britain’s children and young people engaged in this important subject.

I would be happy to meet with one of your team at any time to discuss these ideas further.

Thank you!

2009-04-14T02:12:00.000-07:00

Just a quick blog to say thank you for your continued support not only for me but for the campaign itself, it is much appreciated.

A few of my friends both pre and post transplant are having a rough time at the minute so I am thinking of them lots and this inspires me even more to keep going with the campaign and taking it forward.

Still working hard on this dissertation as well as my pitch for Ed Balls which I am getting some advice on before I send it off.

I am also filling out an application for a prize at university, I have been asked to fill it in by the volunteering service... I am still not 100% sure that I am going to send it off as I feel a bit embarrassed/uncomfortable putting myself forward for it. I didn't start the campaign up to get recognition.... I do it because I want to help over 8000 people on the transplant waiting list receive a second chance at life like I have done.

So Sign Up, Spread the Word and Save Lives!

www.thegiftoflife.org.uk

More pictures...

2009-04-12T01:13:00.000-07:00

To see some more pictures of the Photo Call, Donor Day and the Drinks Reception: CLICK HERE

I'll leave you with a few of my favourites....

Me and Emily at the Flagship Donor Desk in Canary Wharf

Me and the PR superstar Amy MacLaren

Me and Matt Coyne (LLTGL Trustee) - Notice I am stood on a stool!!!!

Me and the Lovely Emily and Adam

My Mentor and true Gentleman - Oli Barrett!

Adam reading about me in the Metro!

Oli and Holly! (Yes another set of Oli and Holly)

Me after a very looooong day!

Post Donor Day Press Release

2009-04-11T01:48:00.000-07:00

Donor Day praised by PM as Holly’s two-minute heroes campaign signs up thousands

An inspirational young campaigner was celebrating today after her efforts were praised by the Prime Minister, Gordon Brown. Holly Shaw, a 21-year-old kidney transplant patient created a national awareness day, Donor Day, on Tuesday 7 April, as part of her ongoing campaign The Gift of Life, which aims to raise awareness of the shortage of organ donors in the UK.

In a statement on the No 10 website, the Prime Minister said:

“I want to give my support and thanks to Holly Shaw and all those involved in her campaign. Joining the organ donation register is a selfless act of kindness which can save many lives and offer new hope for potentially thousands of families across the country.”

Despite the vast majority of Brits supporting organ donation, just 23% have signed the register. Holly’s campaign aims to make it easier to sign up and spread the word. Donor Day was built around asking people to go online and sign the Organ Donor Register and then promote the fact they had done so via their social networking status. In addition, Holly coordinated an army of volunteers to man Donor Desks up and down the country - to talk to people about organ donation and encourage them to sign a registration form.

The registration forms are now being collated, website hits and text sign ups counted – but all early indications point to a terrific spike of activity, with in people joining the Register in their thousands.

On Tuesday afternoon, the campaign had become the second most re-tweeted tweet on Twitter. By 5pm, there had been over 3,200 online registrations via www.organdonation.nhs.uk – more than 15 times the average daily registration rate. There was also an increase in calls to the Organ Donor Line.

Holly said: “My aim was for Donor Day to succeed in saving lives by encouraging more people to sign the Organ Donor Register. I’m ecstatic, and a little overwhelmed, to learn that the campaign generated such a brilliant response. The day was a fantastic experience, and to receive a personal message from No 10 was the icing on the cake!”

Holly is one of the campaigners in Channel 4’s Battlefront initiative; a multi-platform project aimed at 14 to 21-year-olds which encourages young people to get actively involved in campaigning about a cause in which they believe. Her campaign mentor is serial entrepreneur, Oli Barrett.

Oli said: “I’m incredibly proud of what Holly has achieved. A 15 fold increase on the average daily sign up rate is amazing. I hope that the impact of the campaign will be felt far beyond a single day; I think we can expect more sign ups to come in throughout the Easter period thanks to the online buzz created around the issue.”

As the campaign began to build earlier this month, ahead of Donor Day itself, NHS Blood and Transplant reported an increased pattern of activity. Since 1 April, the daily registrations have increased three-fold – from an average of 205 per day to an average of 674 per day.

Gordon Brown’s support on Donor Day followed other high profile endorsements of Holly’s campaign. Earlier in the week, she received positive messages of support from X-Factor winner Alexandra Burke, singer Connie Fisher and actress Nina Wadia, while the promotional photocall was attended by actress Fay Ripley and lead singer of Soul II Soul, Melissa Bell who last year announced that she is waiting for a kidney donor and is on dialysis three times each week.

· There are more than 8,000 people currently waiting for a transplant that could save or transform their lives

· Each year, around 1,000 people die due to the lack of donor organs available

· 90% of people in the UK say that they would allow their organs to be used. But only 23% have joined the Organ Donor Register

· You are statistically more likely to need a transplant than become a donor

· It takes just two minutes to sign the Register. Visit www.thegiftoflife.org.uk or www.organdonation.nhs.uk / text GIFT to 64118 or telephone 0845 60 60 400

Press Release By Amy MacLaren from Colman Getty.

I was on Real Radio 105.4 yesterday and an article appeared on the Manchester Evening News Website today... although the figures are slightly wrong. You can read it here: http://www.manchestereveningnews.co.uk/news/health/s/1107952_hollys_1000_donor_triumph

3222 signed up online, of that number 995 were directly through my website!

Donor Drinks Speech

2009-04-10T01:51:00.000-07:00

I was so emotional at the drinks reception, it was all a bit of a whirlwind so I didn't read my full speech out, so for those of you that are interested here it is in full....

Thank you for coming tonight, to celebrate Donor Day! I won’t bore you for too long!

I just wanted to take this opportunity to tell you a bit about me and my campaign, for those of you that don’t already know.

Today is World Health Day, but I’m tackling an issue that is close to my heart, or should I say kidney? This year, 1,000 people in the UK alone will die because of the shortage of donor organs. There are 8,000 people in the UK currently waiting for an organ transplant that could save or transform their life. 90% of people in the UK, when questioned, said they would allow their organs to be used. Yet only 23% have signed up. Statistically, you are more likely to need a transplant than become a donor.

In the time it takes me to read this, or boil the kettle for a cup of tea, you could have signed up to the Organ Donor Register and helped save a life. I am passionate about encouraging as many people as possible to sign up; to close the gap between the number of people saying they would and those that actually do. I’m doing this because I know only too well what waiting on the transplant list is like.

I was a perfectly healthy teenager when suddenly, just after Christmas in 2004, I was taken ill and rushed into hospital. Eventually a scan of my kidneys showed they had shrunk and were no longer doing the job they were supposed to. At this point I was told I had End Stage Renal Failure (ESRF) and needed to go on dialysis immediately, which I would remain on for the foreseeable future until a suitable donor kidney was found for a transplant. As you can imagine this came as a huge shock to both me and my family, I was only 17!
From then on, I required dialysis 3 times a week for 3 hours at a time and waited patiently for that phone call saying the transplant was going to take place. The dialysis itself was restrictive, time-consuming and had unpleasant side-effects including low energy levels, tiring easily and almost constant nausea. However I continued with my studies at college and went on to university.

I first heard about The Battlefront Project back in September 2008 at this point I was still on dialysis trying to raise awareness at every available opportunity about the importance of Organ Donation. Becoming an advocate for the Live Life Then Give Life charity made me feel very proud and made me feel like I was doing something to help. They support people waiting for transplants and fund projects that increase the numbers of successful transplants in the UK. They have been a huge help to me and my family and I would like to take this opportunity to thank the whole team!

I am now 21 and I am pleased to say my story has a happy ending, as in October 2008 I received the call I had been waiting over 3 years for, a suitable kidney had been found and the transplant took place that evening. In the same week I also found out I had won the competition to become the 20^th Battlefront Campaigner! Obviously I was still recovering from my Op so I wasn’t able to get as hands on as I would have liked, that is where the wonderful Emily Thackray came to my rescue! She stepped in and took the reigns until I was strong enough to get campaigning!

Life since my transplant is barely recognisable from that before kidney failure and dialysis, I have my health back I am enjoying the freedom from dialysis and the fact I can do normal everyday things that people take for granted. I can now socialise with my friends, eat and drink what I want. My family have got the old Holly back. Since my transplant I have been places I have never been, experienced things I have never experienced before and met people that I would never have met.

I am determined to use my new found freedom to promote the plight of others on the waiting list by encouraging more people to become organ donors.

The Gift of Life campaign aims to promote the benefits of signing up to the Organ Donor Register, and create discussion and debate around the issue, clearing up the myths and misconceptions many people seem to have about organ donation!

Donor Day took place today with volunteers up and down the country getting involved and setting up their own Donor Desks, from Warrington, to Birmingham, to Liverpool and of course the flagship Donor Desk in Canary Wharf! Many people have become 2 minute heroes today - if only one person had signed up today, that would have been enough for me!

I have so many people to thank for making this happen, firstly The Battlefront team and channel 4, I would never have dreamed my little idea would have turned into this! My fantastically supportive family for putting up with me and my moods when things weren’t going my way! People from organisations such as NHS Blood and Transplant and LLTGL, companies such as Dave, Moo.com and Airlock and of course Adam Street for hosting this event tonight!

Oli Barrett my mentor who has helped me immensely and kept me focussed in my ideas, he has also introduced me to so many influential people including Amy Maclaren who has been there at the end of the phone when I have been having a panic, but she has also helped me get the message out there and into the media, and when Oli jetted off to America in the run up to today he left me a great replacement mentor in Michelle Acton-Bond.

Thanks to all of Holly’s Helpers and everyone who agreed to be interviewed or filmed , including my Transplant Surgeon and the nurses at The Royal Liverpool Hospital! Emily – my right hand woman, what can I say, you’re a shining star! You know how much it means to me that you have shared this journey with me, Thanks!

But last, and most importantly my donor as without them, none of this would have been possible I will be eternally grateful to the donor and their family for giving me this chance at a new life. I intend to make the most of my precious “Gift of Life” and I am going to take this campaign forward and continue raising as much awareness as I possibly can for all the people who aren’t here today because their wait was too long and those still fighting on, waiting for that transplant that they so deserve.

Thank you and enjoy your evening!

2009-04-09T12:33:00.000-07:00

Please scroll down and read the previous posts as I have had a busy few days blogging....

We travelled back from London after some final filming with the Battlefront crew, all the filming for this is now done!

On my way back to Warrington I received a phone call from a tv company called North One TV saying they were interested in doing a documentary on Organ Donation and would be interested in hearing my story! I really need to concentrate on University and my dissertation at the minute. The filming for Battlefront wasn't without stress and so I will have to think carefully if I want to be tied to another film crew. I suppose it depends how often they would want to film and what they want to film! Anyway I didn't say no... so watch this space!

Other news... I am now being followed by Sarah Brown on Twitter! I sent her a message saying how thrilled I was to receive the Prime Minister's support. She replied... "Happy to have support the campaign. Congratulations on Donor Day. All the best Sarah Brown"

I also got a great message from the lovely Ben Shephard on twitter which said... "Holly it was great to meet you and what a huge result for donor day, your website and challenge is inspirational"

I did an interview today for Real Radio (North West) 105.4 - it was a recorded one. The reporter came to my house and it went well, he then went on to speak to Nicola Stitt who helped to man a Donor Desk at The Royal Liverpool Hospital! This will be aired tomorrow at some point so for those of you who live in the North West listen out for it... or you can listen online here.

I have also had interest from the Manchester Evening News and they are hoping to run a story on my success with Donor Day!

I have now got to write a pitch of my campaign for the Rt Hon Ed Balls who I met last week. All the Battlefront campaigners were invited to do this so that he can read them and then try and find people who could help take each campaign forward! I have never written a pitch before so I am unsure how to word it, but hey, I will give it a go and let you know how I get on!

So although Donor Day is over I am still quite busy concentrating on my dissertation for the moment, so may be quiet for a while... normal service will resume shortly!

Donor Day!

2009-04-07T12:04:00.000-07:00

Well today was D-Day and what a day it was!

It started off with a very early morning! 5.30! The crew from Battlefront wanted to film me before I left for GMTV so they arrived at 6.20 before the car picked me up at 6.50 - It was a big chrysler car! I didn't really take much of the journey in as I was so nervous and was running through in my head what I was going to say!

I arrived at the GMTV studios, greeted by Amy who was clutching the Metro - with the masthead that clearly wasn't the usual one! It had a massive red heart in place of its O!

What a great start to the media frenzy that would hit Donor Day! There was also an article inside the Metro which you can read here.

There was a bit of filming with Battlefront outside the GMTV studios and then in I went and straight into make up! Whilst I was in make-up I did my first radio interview of the day with City Talk. I was really nervous but all went well and they were really supportive, vowing to plug Donor Day throughout the day! I had a quick pic taken with Richard Arnold - who was fab!

From make-up, no chance to think - I was whisked into the studio and was greeted by the lovely Ben Shephard and Emma. I gave them a mug each with my logo on it and slogan! Ben immediately transferred his coffee into it and used it for the rest of the show - RESULT!

The interview went well, I hope I got my point across ok? I felt myself stuttering a bit but Ben and Emma put me at ease - as well as the lovely John who was sat next to me from NHS Blood and Transplant! You can see some information from GMTV here! From GMTV we then made our way to Canary Wharf to set up the Donor Desk doing an interview with Allan Beswick on Radio Manchester in the car on the way!

At this point I also found out that an article had been put up on the Guardian Online website which you can read here.

Donor Desk was set up in Canary Wharf and we began giving out leaflets, some people just blanked us when we asked them about Organ Donation and whether they wanted to sign up. In fact some people were down right rude, however there were loads of nice people and some great stories to hear!

I left my Mum, Dad and my volunteers here (who were stars) and I went off to visit two more Donor Desks, one in Spitalfields market - run by Holly Cocker and her friend Oli Foggin (who donated a kidney to her - what a selfless act!) They were doing a great job and it was really good for me to see donor desks in different locations... the next one I visited was within a firm called Allen and Overy I was introduced to Shankari there who was lovely and was genuinely interested in my campaign, and even suggested working together in the future on a project she is interested in starting!

I then did another interview with City Talk - this time talking to Dean Sullivan (Jimmy Corkhill) from Brookside! Although I was unaware of this at the time until I was told later that day by my brother! Next a quick radio interview with the Warrington radio station Wire FM. Both interviews went well although Dean did grill me more than the others. This was probably a good thing as he was asking the questions that most people would want to know the answers to!

Back to Canary Wharf for more of handing out leaflets and encouraging people to sign up! I also did an interview with the London Docklands newspaper at this point as well as the Daily Mirror! It was then time to pack the desk up and make our way to the drinks venue! My feet were so sore by this point (I don't know how I was still standing) yet we walked to the tube and traveled in rush hour! Not such a good idea. We went along a few stops but gave up at Waterloo and hailed a taxi as I was feeling pretty sick at this point!

We arrived at the drinks venue Adam Street Private Members Club and didn't even really get chance to put out any of the leaflets I wanted to! Battlefront wanted to film and I wanted to get changed (guests were arriving and I still hadn't got my dress on!) I got changed in the loos (very glam) and was able to greet some of my guests. This was very brief as I was whisked off to Sky News' Westminster studio to do a live interview with Matt Smith about how the internet had given me the platform to campaign! By this time I was shattered and felt that I didn't really do a good job as I was stuttering! But hey, I think I can be forgiven as I had been up 14 hours! I was rushed back by car to the drinks reception and was barely there 10 minutes and I had to do my speech. Mine followed my mentor Oli Barrett's (he is a fantastic speaker and I really couldn't compare) I was so emotional by this point I couldn't bring myself to read out the whole speech. I burst into tears when I started talking about my Donor and decided Emily should read it for me! BAD IDEA - she was in floods if tears as well! It went down well anyway and I'm glad I got some of it out before I turned into an emotional wreck!

More pictures to follow!

The emotions didn't stop there as I had to take a phone call which was the 2nd most amazing one of my life (after the one saying that a kidney had become available for me). It was from the Prime Minister's Health Advisor saying that the Prime Minister had put out a quote of support for my campaign on the Number 10 Website!

“I want to give my support and thanks to Holly Shaw and all those involved in her campaign. Joining the organ donation register is a selfless act of kindness which can save many lives and offer new hope for potentially thousands of families across the country.”

Yay! I began to well up and I couldn't believe it. The best was yet to come as he then went on to say that Gordon Brown had been so impressed that he actually wanted to meet me to discuss the campaign and a letter would be in the post! I'm still grinning!

I couldn't wait to to tell Oli (my mentor) and we both went down to tell the awaiting room of guests the good news. It was so great to see their faces when we announced what had just happened! Everybody was so pleased for me and at that minute I knew Donor Day had been a wonderful success, thanks to everyone that was involved!

What a fantastic day... and that was the icing on the cake... my feet have hardly touched the ground!

Photocall Day!

2009-04-06T12:06:00.000-07:00

Yay!

The photo call was great! I'm not going to lie, it was one of the most stressful things I have ever done! I had to co-ordinate everyone, setting up the desks and making sure everyone knew what was happening as well as going to collect deliveries from Dave!

3 photographers turned up! Including one that Amy Maclaren had organised to come along, she was fantastic and had some really interesting ideas regarding the photos!

Everything was set up, photographers in place and they started clicking away taking photos and it was decided that a celebrity was really necessary to make it a success. Luckily Emily got on the case and stood outside the capital FM HQ and came across the lovely Fay Ripley who kindly agreed to don a t-shirt and have her picture taken which was fantastic! She was really interested in the campaign and thought it was a great idea!

We all packed away the donor desks and then I received a phonecall from someone called Melissa Bell. She asked if we had finished as she had only just seen the email inviting her to the photo call. I was a bit confused (as I hadn't invited her) I said awww we've just packed up and I think I am on my way to a meeting now! She then spoke to another lady who came to be in the photoshoot and everything started to click... Melissa Bell was the lead singer of Soul 2 Soul and the mother of Alexandra Burke, who also happens to be waiting for a kidney transplant!!! She said she would be there in 15 minutes and so we got the desk set up again ready for another round of pictures - the only problem was there were no photographers, they had all gone! We quickly rang round and the lovely Holly Cocker came back as she is a superb photographer and thankfully hadn't gone too far!

So no celebs at the start of the day and by the end 2! yay! The pictures turned out great and the photocall was a huge success. Thanks to everyone who turned up Lynne, Maribel, Holly, Oli, Sarah, Helen, Abby, Molly, Audrey and of course the lovely Emily, I couldn't have done it without her! She was really good at calming me down and really good at taking control when I was in a bit of a fluster!

I then got the chance to have another chance to chat to Amy who prepped me for my GMTV interview that was planned for the next day! That put me at ease a little and was a great practice run! I also caught up with my mentor Oli Barrett who I was relieved to see as he had been away in America and we had only really chatted via email. We finalised some details for the next day (Donor Day) and discussed media interest in Donor Day.

In the afternoon I got the chance to visit the drinks venue Adam Street again, everytime I see it I get more and more excited about it! I was hoping to go back to the hotel for a rest, but Battlefront wanted to film my nervousness the day before Donor Day... The camera lady didn't leave till 10.30 and I still had to wash my hair and get up at 5.30 for GMTV....

Photo Call Tomorrow

2009-04-05T11:42:00.000-07:00

So its photo call day tomorrow, I am a bit stressed about it all really....

Will everyone turn up?

Will a celebrity turn up?

Will photographers turn up?

Will the designs from Dave turn up?

Wish me luck!

P.S - My very own website (designed by airlock) is up and running now yay!

Check it out - www.thegiftoflife.org.uk