Donor Day!

Hi just a quick blog...

Here are the current locations I have Donor Desks... Let me know if you want to get involved and if I have missed your location off the list do get in touch! There is also still time to organise your own Donor Desk if you are interested.

London (University College Hospital)

London (Canary Wharf)

London (The Treasury)

London (City University)

Swindon

Croyden

Epsom (Market Square)

Isle of Man

Cambridgeshire

Sheffield

Cardiff

Birmingham x 2

Manchester

Warrington

Liverpool (RLUH)

Newcastle

York

For more information on Donor Day please click here!

Thanks for your continued support!

Warrington HQ

So my Mum and Dad (and me, if I am honest) have become increasingly worried about the workload I have taken on so soon after my transplant! I am finding it hard to juggle going to university, work on my dissertation, campaigning and filming and not forgetting hospital and blood appointments! I spoke to Battlefront/Raw television about my concerns as did my Mum and Dad and they were really supportive and have suggested I stay up in Warrington (instead of travelling to London) and have my HQ up here and conduct/delegate from here!

Luckily I have great help in my Mentor Oli Barrett and the lovely Emily T from LLTGL!

This has relieved some pressure from me, although I am slightly stressed about plans for Donor Day and it all coming together on time! I am sure it will all be fine! I will still be going down to London for the Battlefront gathering on the 30th March and again for Donor day and the days leading up to it!

So not much other news to tell really. I have been busy working on my dissertation most of the weekend, although I did have the night off on Saturday to go and see the very funny Jimmy Carr! I went in to town with some friends for a bit of a dance and a few beverages as you can see from the pics:

Before

and after....

Today I spent a lovely afternoon with the fabulous Pauline Weaver from the Donor Family Network.

I first had the privilege of meeting Pauline at an Organ Donation Conference in Manchester where I went with Emily a few days before my transplant! Today we chatted about her latest plans for the Donor Family Network and how she is going to help me on Donor Day which is great! She also hopes to get more families from the DFN to come to some of the Donor Desks on the day as well!

We also talked about writing to Donor Families (which I am in the process of at the moment). It is the hardest letter I have ever had to write but I hope it brings some comfort to the Donor Family when I do send it. I am also hoping to attend the Donor Family service in Birmingham with my family in July.This is where donor families and recipients come together to share their experiences and remember the special people who through organ donation gave the gift of life.

Pauline kindly did a flip video for me which I will be uploading to my Battlefront page a.s.a.p!

Remember if you want to get involved in Donor Day/Donor Desks do get in touch via email and I can send you further information!

The reason for campaigning....

Well you may remember a while back I blogged about a brave little girl called Bethany. She is only 5 years old and recently received a liver transplant! I am pleased to say things are going well and her Mum Sam has made this video montage of Bethany's transplant journey in the hope it encourages more people to sign the Organ Donor Register!

It's a powerful and moving video with a strong message! Let's hope it can save more lives and more people like Bethany can live a healthy and happy life!


Bethany's Transplant Journey

It's stories like these which spur me on to keep fighting and campaigning for those still on the waiting list and in desperate need of a transplant. I want more people to have the happy ending they deserve, just like Bethany and me!

Filming...

So today the team from Raw television (who are filming Battlefront) came up to Warrington to film me out in the town centre asking people about their thoughts on Organ Donation.

I was really nervous about approaching people at first but soon got into the swing of things! Everyone was really friendly and approachable! It was interesting to hear people's views on Organ Donation and their reasons why they had or had not signed up to the Organ Donor Register! The main reason why people hadn't signed up was the fact that they didn't want to think about dying, but as I have said before, people like Jess and others on the waiting list have to face this prospect everyday so people should be able to think about their own mortality for two minutes while they sign up!

It was also interesting to hear someone say that they didn't know how to go about signing up to become an organ donor! I was shocked! It just shows you there isn't enough education/information out there! People, mainly ones who aren't affected by Organ Donation had a lack of understanding, one lady said that she was scared of blood tests, to which I politely tried to reply with the fact that it wouldn't really matter because she would be dead!

Another topic that kept coming up was the fact that people didn't want to donate their organs to someone who wasn't deserving of them. I don't know if I am talking out of line here but I think that is largely due to the fact of George Best receiving a liver transplant and not treating it like the precious gift it is, by returning to drinking! I replied to one of the chaps that I had in fact received a kidney transplant myself, to which he apologised, went red and looked quite guilty about what he had said! I wasn't offended though as this was the whole point of the exercise, to hear the myths and misconceptions people have about Organ Donation!

Hopefully I can do some research on some of these myths and misconceptions and encourage more people to sign up!

After that we went for a quick bite to eat and then headed up to the Dialysis Unit in Warrington where I used to dialyse 3 times a week! It was strange going back and seeing people in a similar situation to what I was in a few months back. It makes me more determined to keep campaigning and fighting for people still on the waiting list. This is me when on dialysis... the only 2 pictures I have...


Being back there brought lots of memories, some good some not so good! I am grateful to have the freedom to be able to do all this organ donation awareness. There is no way I could have done this before receiving my transplant, I just wouldn't have had the energy!

All in all it was a great day and hopefully it will encourage the people I talked to this morning to go home and think about signing the register!

A reminder...

Just a quick blog to remind you why I am doing my gift of life campaign and fighting for all the people on the transplant waiting list.... please watch this montage (made by Emily T) of Jessica Wales who I had the pleasure of meeting a few weeks back. She is in desperate need of a life-saving double lung transplant, with out which she will die. If this doesn't inspire you to sign the Organ Donor Register I don't know what will! This is a day in the life of Jessica....

Make an on-line slide show at www.OneTrueMedia.com

I've had a few volunteers willing to speak to the media and set up their own Donor Desks, keep them coming! The more the merrier!

So I am busy contacting various people about Donor Day, creating lists and lists of things to do! As well as trying to fit in some uni work!

I appeared in my Local Warrington Guardian today, click here to see the article. Battlefront got a mention which was great. I deliberately didn't mention Donor Day as I thought I could milk it and maybe get another mention in the paper nearer the time haha!

My Mum and Dad managed to get in on the action too with a picture of them with me in recovery! (not very flattering of me, but hey!)

Other news...

Today is Abigail's (my neice) half birthday! Can't believe how quickly the past 6months have gone!
She had her first suck of chocolate to celebrate! Here she is before....

and after....

I decided that I needed a break from the campaigning stuff and Uni work! I felt like I hadn't done anything FUN for a while or anything too strenuous since my transplant so I went Ice-Skating!

Mum and Dad took me and decided they would skate too! Well that didn't last long, Mum stood on the ice (not moving) for 5 minutes and then got off. Dad made slightly more progress and shuffled about 5 yards and then gave up! As for me... I had a great time and didn't fall over once!

Here is me on the Ice...



I would never have been able to do this pre-transplant! It has made me think about other stuff that I want to do in the future. I am going to make a list and post it as a blog when I get round to it! Planning things in advance was a no-no before transplant and so was being spontaneous so it was a lose lose situation. I can't believe how much my life has changed!

As I said in the article... I couldn’t be spontaneous before and just go away for the weekend because of the dialysis. I feel much healthier now. I don’t know where the donor came from but they have given me a second chance for which I will be grateful for the rest of my life.

Date for your Diary... 7th April 2009

Ok so I've been neglectful of my blog recently... but with good reason! Things are a bit manic at the moment... trying to fit in Uni work, Clinic at the hospital along with all the battlefront stuff! Even though you haven't seen any fruits of my labour yet... I can assure you I am busy organising and it's constantly on my mind!

This is the new logo, which will be a part of the new Gift of Life website which will hopefully be up and running by the end of the month... exciting stuff! So I have had some input on organising that, what information to include etc.

But what else have I been organising? DONOR DAY!

What is Donor Day?

To mark World Health Day (7 April 2009), I am organising a Donor Day to raise more awareness of Organ Donation and to encourage more people across the UK to sign up to the Organ Donor Register.

Donor Desk

I am setting up a Donor Desk in a public space in London to talk to people about Organ Donation and encouraging them to be pro-active and sign up. Leaflets will be available to people who want more information about it. A laptop will be to hand so people can sign up on the spot via UK Transplant but you will still be able to sign up the ‘old fashioned’ way using the Organ Donor Registration Form.

Could you organise your own Donor Desk in a public place, health organisation or work place?

If you would like to get involved and set up your own Donor Desk all you would need is a desk, leaflets on Organ Donation, Registration leaflets/laptop and a person to man the desk!

Get involved... and get people to sign up!

If you are unable to hold your own Donor Desk but would still like to get involved you can do this without even having to leave your arm chair....Check this out....

Also if you are affected by organ donation or transplantation and would be willing to talk to the media on Donor Day (7th April) please get in touch!

Filming, Fun, Tears and Laughter....

So off I went again down to London on Monday! We set off after I had been to clinic and arrived at the Travelodge in London at 3.30 which left plenty of time to visit Oxford Street for a bit of window shopping and a bite to eat. We then headed off to Harrods which was great.

I have had my transplant 4months today, I still can’t believe I am able to do all these things now and be so spontaneous! It’s a strange feeling having sore feet before getting out of breath and feeling tired myself! As you can see from the picture my mum and I soaked our feet in the bath when we got back to soothe them a bit!

Tuesday morning we walked from the Travelodge to the underground and then headed into London (Goodge Street) to meet up with the crew from Battlefront and Oli Barrett (my BF mentor) He took us to One Alfred Place where we had a really interesting and productive meeting with Amy McClaren from Colman Getty.

Amy is a PR expert with some great tips on campaigning, press releases and my event in general! I am also excited to say that she has agreed to be an E-mentor for me so I can contact her via email to ask her for help which is great and I will certainly be taking her up on her offer! Lots of things to do with the day were discussed, nothing was set in stone yet but as soon as I know anything of course you will be the first to know!

After the meeting Rosie and Tom from Battlefront drove us to pick up the lovely Emily T from Surrey (stopping for a sausage butty on the way, very glamorous! Haha).

We then travelled on down to Kent to interview Jessica Wales who had kindly offered to be filmed for my campaign, she is currently waiting for a double lung transplant and has been for the past 3 ½ years! In that time she has had 5 false alarms (where the call comes, but the transplant doesn’t go ahead) she is a real tough cookie and has a great sense of humour! Her and her family were so friendly and welcoming, so I would like to say thank you for that.

Jessica has Cystic Fibrosis and was diagnosed at about 4 months old and began the daily medications and treatments to try and keep her well, but she was in and out of hospital regularly with chest infections. When you are listed for a double lung transplant you are usually given a prognosis, Jess was given 2 years without a transplant she has already outlived her prognosis which shows her determination and how desperate she is to survive.

Meeting Jess and hearing about her illness and the restrictions it places on her daily, really hit home with me, I don’t mind admitting I did get a bit emotional watching her struggle to breath (Jess even apologised for making me cry). Although we have “waiting on the list” in common I can never relate it to my situation as I was being kept alive by dialysis, Jess doesn’t have that luxury, for her it really is a matter of life and death.

It was a strange feeling, I almost felt guilty that I had had my transplant and questioned why Jess still had not had hers, I know Jess wouldn’t want me to feel like that but I couldn’t help it. I could have survived on dialysis for many more years yet, while Jess, without a transplant will die. I don’t know how she copes but she does with such strength and humour. The afternoon, although serious, was full of gossip and giggles, in fact we got told off for not staying on topic, personally I blame Emily for this!

To all those people who haven’t signed the Organ Donor Register because they don’t want to think about death and dying, you should look at Jess , Everyday she has to face the fact that without a transplant she will die so surely you could think about your own mortality for 2 minutes while you sign the register.

Jessica says “A transplant to me would mean the world. Not only would I get back my life but my family would get back the girl they used to know.”

Jess is 19, she has so much she wants to do with her life, she’s funny and bubbly, has a zest for life and is a true inspiration. She (along with over 8000 other people on the transplant waiting list) is the reason I am doing this campaign, and the reason more people should sign up to be Organ Donors.

Filming...

Today I had a great day, I met up with the surgeon who actually did my transplant, Mr Bakran! It was really interesting to hear him talk about transplants and organ donation. The meeting took place in the operating theatre itself so my dad and I and even the crew had to dress up in scrubs, which was a new experience for us all!!! Here's some pics....

Me and Rosie

Mr Bakran, Me, Dad, Tom and Rosie

Rosie, Tom and Dad

It was very intriguing hearing about what happened in preparation for my transplant, being in the pre-theatre room and being anesthetised, which is my last memory of the night of my transplant! We were shown around the scrub room and saw where the instruments and medical equipment are kept and then we were taken into the actual theatre!

I was speaking to Mr Bakran about the aims of my campaign and he seemed really impressed and thought it was great that a young person was campaigning on this topic. It was also great to hear him talk about transplant statistics and why he thought more people hadn't signed up to the Organ Donor Register - he believes that people (especially young people) don't like to talk about their own mortality and death! This is true - it is a bit of a taboo subject amongst young people, but it shouldn't be! Look at what age I became ill (17) it just shows that it can happen to anyone at any age!

He was keen to encourage more people to sign up to the Organ Donor Register and was really supportive of my campaign. I really appreciated him taking the time out to speak to me today! It has spurred me on to make this campaign a huge success and in the process save and transform lives!

I also spoke to the nurse that originally looked after me in clinic once I was discharged! We sprung filming on her but she was really happy to be involved which was great! And finally we spoke to the ward manager Andy who actually looked after me when I was first diagnosed with Kidney failure and again after my transplant. It was interesting to hear him talk about the difference in me from when I was on dialysis and now that I've had my transplant!

I then came home and had a webcam chat with my mentor Oli who again was full of great ideas to take the campaign forward, everytime I speak to him he motivates me! Will keep you updated on our progress!

I am off out tonight (dressed as a nun) for my friend's birthday so that should be fun! One final favour before I go....

I would also appreciate you answering my current poll on my bebo page about whether you would be willing to display the fact that you are on the Organ Donor Register on your networking profiles! You vote by clicking here! Come on get involved....