Transplant, Tantrums & Tiaras

Hello!

2012-01-08T13:36:00.001-08:00

Long time, no see... I can't believe I have neglected this blog for a whole year and this week marks 7 years since being diagnosed with Kidney Failure!

I have been feeling the need to blog for a while but don’t really know what to say or where to start as I’ve been away for so long.

I suppose I should start with me and where I am up to at the minute. I am about to start full time work this week! I have been doing 3 days (30 hours) for some months now so I am hoping I will be able to cope with a full 40hour week, I will have Wednesdays off so aim to rest as much as I can then.

The other and probably most exciting news is that last week I started University! I am studying for my Early Years Professional Status which is the next step on from my Early Years Studies degree which I gained in 2010. I am will be at based at Chester University and the course will take a year, I only have to attend one Monday a month and every other Wednesday evening! Although daunting I know it’s a natural progression and something I need to do to further myself and my career. As part of this I will have to work with children of different ages which means me moving rooms within the nursery to work with toddlers. If I had a choice I would stay in pre-school, it’s the age range I’m most comfortable with, but I know it’s something I need to do and will no doubt adapt to in no time.

So 2012 looks set to be busy, exciting and full of change!

The end of 2011 was the hardest time of my life, I can’t put into words what I want to say about it right now but I know in time I will, so I will save that for my next blog.

How time flies...

2011-01-03T05:34:00.000-08:00

Six years ago today I was diagnosed with End Stage Kidney Failure, I wouldn't change it for the world. I have achieved some wonderful things, met some amazing people and had some incredible experiences, I am so lucky to be happy and healthy now, all thanks to my wonderful donor and their family.

Dialysis January 2005

Transplant 2008

Now

My 2010

2010-12-31T03:44:00.000-08:00

1. What did you do in 2010 that you'd never done before? ... Lots of things, Still find it surreal to be healthy and doing normal everyday things! 2 events that stick out the most is obviously getting my first proper job as a nursery nurse and the 2nd is moving out of home into my very own appartment (thanks to my wonderful family for supporting me on this one)

2. Did you keep your new years' resolutions, and will you make more for next year? My aim is just to keep living life how I want to live it, doing the things I couldn't do when I was ill and making my donor and their family proud.

3. How will you be spending New Year's Eve? ... I will be spending the evening with my parents, just a quiet one possibly a DVD and a takeaway.

4. Did anyone close to you die? ... My amazing friend Jessica Wales sadly lost her fight, she recieved her double lung transplant on the 27th December 2009 and sadly died on the 12th January 2010. She was an inspiration to me and continues to be.

5. What countries did you visit? ... Ireland and Malta (my first holiday abroad since my transplant!)

6. What would you like to have in 2011 that you lacked in 2010? ... I can't think of anything more that I could have wished for in 2010 other than for Jess to still be with us and experiencing her new life. I think my Mum would answer... a fella!

7. What date from 2010 will remain etched upon your memory, and why? ... 31st August was the day I moved out of home, attempted to grow up and become independant!

8. What was your biggest achievement of the year? ... becoming a trustee for the amazing transplant charity Live Life Then Give Life.

9. What was your biggest failure? ... Hmmm a hard one, probably not seeing Jess before she died, the last time I saw her was in the October.

10. Did you suffer illness or injury? ... This year I was hospitalised for the first time since my transplant with pneumonia, I was only in for 4 days but it took me a good month for me to fully recover.

11. What was the best thing you bought? ... The appartment! With a lot of help from my family :)

12. Where did most of your money go? ... House things, new sofas, bed, tv etc!

13. What song will always remind you of 2010? ... Lots of songs for different reasons, Savage Garden's Truly Madly Deeply was Jess' song, it was played at her funeral and I have not yet been able to listen to it in full, brings back too many memories. Cilos Green's Forget You reminds me of my works christmas do and drunken times with friends, and then I want it that way by the Backstreet Boys - memories of a houseparty were all my kitchen utensils were used as microphones!

14. What do you wish you'd done more of? ... More visiting of friends, have made so many through Live Life Then Give Life who I don't see enough because they are based all over the country!

15. What do you wish you'd done less of? .... spending money?

16. What was your favourite TV program? ... Still an avid watcher of Hollyoaks!

17. Do you hate anyone now that you didn't hate this time last year? ... No

18. What was the best book you read? ... I'm in the middle of Holly and Fearnes Best Friends Guide to Life at the minute - I got it as a present for Christmas from secret santa at work! Thanks De :) x

19. What was your greatest musical discovery? ... I saw Lady GaGa live this year she was amazing!

20. What was your favourite film of this year? ... Eclipse!

21. What did you do on your birthday? ... I went to see Florence and the Machine in Blackpool with some mates, my Bro and his wife! We stayed over in a hotel so made a night of it :)

22. What kept you sane? ... My Family as always - Thank you :) xx

23. Who did you miss? ... Jess - and I always will.

24. Who was the best new person you met? ... All the new friends I made at work! Love them all to bits! x

25. Tell us a valuable life lesson you learned in 2010: ... Don't take things for granted and live life to the full as you never know when its going to end. Tell the people you care about that you love them.

Normal

2010-11-01T13:37:00.000-07:00

Ok so here I am... 6 months after my last blog, with so much to tell you all but not a lot to say, make sense? I thought not!

So what have I been up to? Good question, now where to start. Firstly the reason I am writing this blog is because I have been told off by numerous people that I don't update anymore and the last blog I wrote wasn't exactly a happy one (the title being "I didn't make it" - I hope none of you thought I had popped my clogs!) and secondly my English has gotten worse since I stopped. So here is my attempt at trying to keep this blogging a regular thing... small and short updates are the way forward I think!

So why so long since I updated, I guess I don't think people will find me that interesting anymore? I do normal everyday things now? Theres a lot less drama in my life (which is a good thing, believe me.) I guess I feel more normal, normal life has taken over and I don't feel the need to shout about it on here, because whats happening to me is just that... normal, nothing interesting, nothing out of the ordinary... just normal, I'm not complaining, I like normal!

A few high points of the last 6 months...

The main one is I moved into my own place in August! My family have been a huge support to me on this one, I now live 5ish minutes away from my parents in a 3rd floor 2 bedroom flat! I have loved making it my own, choosing the furniture, buying useless ornaments (that just look pretty) and having my own space!? Just a normal 23 year old thing to do!

I had a fab holiday abroad in Malta in July with my parents, brother, sister in law and niece. (The first since my transplant) I swam with dolphins, went canoeing, jet skiing and sampled some lovely Maltease cocktails! Just a normal holiday!

I am going to be an Auntie again! My nephew is due this month and I really can't wait! I love the smell of little babies, giving them bottles and rocking them to sleep, so much fun! A normal occasion to look forward to.

I've celebrated being another year older (probably not wiser) and another year with my kidney (last week).

I've had many drunken, happy and normal nights out with the girls!

I went for my annual review at the hospital last week, I had the best blood results I have ever had, my creatinine being 90 (in a healthy person this would be 80) and when I was on dialysis it was 1654! My creatinine clearance was 106, my kindey is clearing 106mls every minute... effectively meaning my kidney is working at 106% (anything above 50 would be acceptable)!

I'm loving my work, my role as a trustee for Live Life Then Give Life, my friends and my family.

I'm loving the fact that I am normal, I can write about normal everyday mundane things that everyone else does but this time 2 years ago I only dreamed of doing. I know that there are people out there that don't feel "normal" a lot of them being my friends who are on the transplant list, I also know only to well that none of the above (normal) things would have been posible if it wasn't for my donor and the gift they gave me.

So thats me, Holly, 24 years old, a nursery nurse who lives on her own (with 2 pet hamsters) who is a trustee for Live Life Then Give Life, has had a kidney transplant but is just normal, and living a very normal life and loving it!

xxx

I didn't make it...

2010-04-27T13:54:00.000-07:00

Firstly apologies for not updating before now (I have a few good reasons) I have done a couple of guest blogs over on Rachy's blog and I am also on the Live Life Then Give Life blogging team now so check that out.

The main reason I haven't been around is... that I didn't make the 2 year mark without being admitted to hospital, this was an aim of mine but oh well... when needs must.

I thought I had a tummy bug, had the usual D and V that comes with it but I also had a sore chest (which I presumed was from coughing and retching, how wrong was I?). This was Friday the 16th and I spent all day in bed, running an impressive temperature of 39.8 at one point, I still insisted on keeping my duvet over me because I was cold (not very sensible). I also insisted on not going to hospital and that I would be fine the next day, which again I was wrong about.

I felt weak and wobbly on my feet, had dizzy spells and constant sickness (I missed 2 doses of my anti rejection drugs, which worried me), finally I gave in and told my Mum to ring the Royal Liverpool hospital transplant ward. The ward suggested I go to my local A and E or their A and E, I would have rather gone to theirs but there was no way that I could manage the 30minute car journey so instead it was off to Warrington. I ordered (well asked politely) my Mum to wash and dry my hair for me as I was in no doubt that they would keep me in, this involved me getting very out of breath, dizzy and faint. (The things us girls do hey)

I made it to the hospital without being sick in the car but spent my hour wait outside the department sat in a wheelchair throwing up in a bucket (so very attractive). Flashbacks from my last time in A and E came over me, this was in 2005 when I was first diagnosed and appeared with exactly the same symptoms. I was probably more worried than I let on but I knew that I was finally in the right place. I was eventually taken through to majors, with my obs being done, bloods taken and a cannula put in (all echoing the exact same routine that had taken place in 2005). I was given a chest x ray, saline drip, paracetamol and hydrocortazone, which had an effect on me within the hour, I was very impressed and felt relieved.

The chest x ray results came back and I was told I had a bad chest infection, so my self diagnosis of a pulled muscle was wrong then... later I found out that it was actually pneumonia I had! To say I was surprised was an understatement, I'd had an injection against it, always presumed you had to be cold to catch it (don't ask me why) and always thought it was more an old peoples illness?!

I was put on IV antibiotics and kept in Warrington Hospital for 2 nights. I was all ready to be discharged when I was told to keep my outpatients appointment at the Royal Liverpool, so me and my Mum (with me still feeling very rough) drove on over. My transplant consultant took one look at me and decided to admit me there and then! I only stayed in for one night and am now back at home on Oral Augmentin antibiotics, which seem to be doing the trick!

So all in all a very eventful few weeks, full of events I don't want to repeat any time soon! I am on the mend, although I still seem to be feeling a bit of chest pain and I'm still getting tired easily. I was signed off work for 2 weeks (one more week to go) and I am booked in for another x ray on Thursday which will hopefully show things clearing up.

It just goes to show how fragile health can be, it did bring memories flooding back and thats what scared me. I was probably beginning to get comfortable with how my health was going and taking it for granted so it really knocked me for 6 when I was housebound for a week... it was like life on dialysis.

I know its nothing compared to what some people (who are awaiting transplants) have been through or are going through at this very minute but It's given be a huge wake up call that nothing is written in stone and health should never be taken for granted....

I haven't fallen off the face of the earth...

2010-03-29T05:36:00.000-07:00

As the title suggests, I am still here (you don't get rid of me that easily)

If I am not updating its because I am having too much fun for my own good! I have done loads of exciting things over the past few weeks that each deserve their own blog, but I just don't have time. So here is a quick run down!

I went to the x factor meet and greet... met them all, loved Jedward and got some fab pics (if you are on facebook you will have already seen them)
I went to London for 5 days ON MY OWN - this wouldn't have been possible before. I stayed with the lovely Charlotte Hogg for 3 nights and spent my last night with the fabulous Emily.
I met some amazing people in London - catching up with my mentor Oli Barrett as well. I have started making plans for Donor Day 2010 and will fill you in when I can.
It was Jess' 21st Birthday the day I was staying with Emily... we released blue and white 21st birthday balloons with Sunflower seeds attached to them (this is what me and Em threw on Jess' beautiful pink coffin at her funeral) we also attached a note to ask the person who finds them to plant them in her memory.
I went to see Peter Kay at one of his intimate gigs for Haiti. He was hilarious!
I am loving my new trustee role for Live Life Then Give Life
Work is going well and I am getting my head around all the paper work!
I am in the spring special of Pick Me up, talking about the gift of life campaign and battlefront!
I jumped off the Royal Liverpool Hospital for the big zip in aid of the Linda McCartney Unit and the St Pauls eye unit. I hated jumping off the ledge but loved the actual zip wire and would definately do it again!
I've booked to go and see Lady GaGa in June :)
I can't remember if I mentioned this in one of my previous blogs but I am thinking of moving out of home (mum still thinks I am joking) but I am not and I want to make it happen in the coming months. (I will have to take some overtime on at work but I am sure it will be worth it)
Rachy is doing well after her double lung transplant and I hope to see her when I get back off my holiday!

On Wednesday I am off to Ireland for a family wedding! The last time I went over for a wedding (2 years ago) I was on dialysis, had to fit the wedding in around this, obviously couldn't eat or drink what I wanted and felt nausious the hole time. My Mum had to pull the car over for me to be sick on the way home from the reception! So this year, it will be all different, I will be eating and drinking and no doubt showing the dance floor some of my moves!

Sorry that this was so brief. I will update more about that when I get back... I will hopefully do a photoblog sometime soon with pics of some of the above events.

Rachy got the call...

2010-03-10T09:55:00.000-08:00

Just a quick update to say my friend Rachael Wakefield got her call for a double lung transplant today :) I got a text at 4.20am this morning and have been on tenterhooks all day waiting on any news, constantly checking my phone, facebook, blogs and twitter! Finally the news came through at 5pm that it was all a go and she was off to theatre!

I am so thrilled for her and her family, she really does deserve this second chance. Rachy had recently been put on the urgent transplant waiting list and I was extremely worried about her as it brought back so many memories of Jess! Of course Rachy is not out of the woods, she has got a long operation ahead of her and an even longer recovery. She is one tough cookie though, and I know she can do it!

She has promised to take me to TGI Fridays and I have promised her a night of cocktails, she best keep her end of the bargain, cos I will definately be keeping mine! Keep up to date with Rachy's progress here and of course on her own blog here.

I am of course thinking of the amazing family who said yes to Organ Donation at such a devestating time for them. You could do something amazing today and save someones life... sign the Organ Donor Register and give people like Rachy a chance. Thank you x

I am now a Trustee!

2010-03-08T07:49:00.000-08:00

I am now a Trustee for Live Life Then Give Life! Woop!

I am mega excited about this, I have been doing stuff for them since 2006/7 and officially became an advocate for them in 2008 so I am really chuffed that they want me on board as a trustee! The AWARD WINNING team is great and I am looking forward to getting to know them better and working with them more in the coming months.

All the trustees have been affected by transplantation/organ donation in one way or another and so can put their personal experiences out there to help others. You can read more about them here. I am well aware of the charities aims and work but I am looking forward to getting more hands on in organising events, Stands, talks etc. I hope I can make a small mark on Live Life Then Give Life and maybe even a small mark on the world of Organ Donation through my role as trustee for this fantastic charity!

So a few places to point you to... obviously the Live Life Then Give Life website
The Live Life Then Give Life Forum - Intoto
The Live Life Then Give Life Blog

Thats it for now, will keep you updated on how its all going, and again, I can't actually believe how lucky I am to be doing all these things. My job and now the trustee role in LLTGL... 2010 is starting to look up... and more news on that in my next blog ;) I'll keep you in suspenders (oops I mean suspense) until then.....

Rough week...

2010-03-07T08:22:00.000-08:00

Just a quick update to say that I'm still alive!

Blogging has taken a back seat while I started work and got settled in, I promise to keep it more up to date when I can. I am liking it at the nursery but have seemed to have picked up a bug from some of the snotty children! I got sent home from work on Tuesday afternoon but had been feeling ill for almost a week before that! I went to my GP on Thursday (I changed my working day to the Friday thankfully) he didn't seem too concerned and gave me some anti-biotics and said take them if I need them and sent me to Warrington Hospital for bloods. I thought I would be ok but got the prescription anyway, I went to work on the Friday (7.30am start!) and felt really ill but was determined to get through the day... I started the anti-biotics at lunch time and today I still feel really ill, achy, cough, going hot and cold and I have no voice! I had to cancel plans with friends today which really annoyed me and reminded me of how I used to have to do this when I was on dialysis!

Anyway I am due at The Royal hospital tomorrow for Bloods and I may pop up to the renal ward if I am still feeling bad to see if I can see a Doc. I feel stupid for moaning about this when there are so many people out there that are so much worse off than me, including Rachael Wakefield... please pop over to the Live Life Then Give Life Ambassoders blog. Rachy is having a really tough time at the minute and has been told that without a transplant soon, she doesn't have long left to live. This pails all my problems into insignificance so ignore my ramblings above, read this blog about this inspirational young lady and then sign the Organ Donor Register if you haven't done so already.

Rachy's story and others like her spur me on to keep campaigning, I appeared in my local paper again talking about the Manchester Roadshow that Rachy, I and others attended to encourage people to sign the register. You can read this here. A few of us appeared on BBC North West as well which was immensly nervewracking but I was really pleased with the final edit.

When I read Rachy's blog, see her posts on facebook and watch her piece from BBC North West, memories of Jess come flooding back. I don't want to lose another friend just because people haven't got round to saying yes to Organ Donation.

A new Chapter...

2010-02-21T14:11:00.000-08:00

The journey of a thousand miles begins with one step.

Well I started my new job, for Kids Unlimited...

I think I'm really going to like it, I'm getting to know the routine, the kids and staff. I'm working Tuesdays and Thursdays, both 10 hour days which is tiring, but I'll get used to it. I am in the pre-school room so will be helping to care for/educate 3 and 4 year olds. I need to learn the paperwork routine but have already planned one activity, recorded it and will need to follow it up again with my key children in a few weeks. I am a key person for 6 children, my responsibilities include liaising with their parents and keeping their files up to date amongst other things.

I have some knowledge of the Early Years Foundation Stage but need to swot up a bit more, I need to be imaginative with my planning so will need to get my thinking cap on and create some fun activities for the kids to get stuck into. Its strange that I have all the knowledge from my assignments and lectures at uni but not much hands on experience but I'm sure it won't take me long to get the hang of things.

I've had a busy few days, as well as the job, but I will update about that in a separate blog. Before my transplant I used to find it hard to blog about things, as my life was not "normal" it revolved around hospitals, diets, needles, medication, clinics and now there's not enough time in my day to sit down and write about all the things I have done, places I have been and people I have met!

I still can't believe I'm not a student and actually have a job. Of course none of this would have been possible with out the generosity of my donor and their family, and I hope that I make them proud in my new venture.

Old Friends... New Friends...

2010-02-15T11:24:00.000-08:00

I had another fantastic night away in Huddersfield last weekend... Its a really lovely village where we go, just outside Huddersfield. Everyone knows everyone, its quite strange to travel an hour down the road and feel like I know so many people and feel so at home, its really great!

My friends boyfriend put us up as usual... he's a fab host, and I managed to bag the bed again, so I didn't have to sleep on the sofa. The only thing about Huddersfield is that everyone seems so tall! Check this picture out:

I did the driving, I probably had a few too many drinks so was feeling it the next day, we didn't leave to around 1 o clock. I hope we go back soon, as I am in love with the nightclub called Camel and will need another fix of it soon enough!

On Saturday I had the privilege of meeting up with Tony Salmon and Sam Marston (check out Sam's blog here) and their lovely daughters Bethany and Eloise. We met in Blackpool at an open day at Donna's Dream House, they do fabulous work for families of seriously ill children, offering them free holidays at the house including passes for the attractions in Blackpool. Bethany received her life saving liver transplant just over a year ago, and my is she looking fabulous! Before this, the family didn't know what the outcome would be for Bethany so took the opportunity to take her to Donna's Dream House. The house became more famous when it recently appeared on Secret Millionaire, and the chap Gary that gave them money is still involved to this day and was there himself on Saturday.

We spent the day giggling and chatting, we looked round the house including the new roundabout and the fabulous state of the art cinema! Then all of a sudden this man came looking for Bethany and Eloise and asked if they wanted a horse ride, I said to Sam excitedly is it a real horse, she gave me the most rediculous look and said of course not! We followed the chap as he led us to the back of the house and there it was in all its glory a PINK horse and carriage (yes a real horse, and when I say pink, I mean the carriage not the horse). To say I was excited was an understatement, luckily there was room for me to jump on too (I would have insisted on them coming back for me to have a go if there wasn't haha!)

Bethany and Eloise decided we were all princess' I was named sleeping beauty at first but then they quickly changed me to Belle. We had a fantastic time, and we finished off the day by me treating Tony, Sam and the girls to sausage and chips on the sea front!

Me and my favourite princess's

I still can't quite believe how far I've come since my transplant... jumping in a car and setting off to Blackpool on my own (aided by my trusty satnav on my Blackberry) just would NEVER have happened before. Turning up to the house with around 50 people stood in the garden and me waltzing in on my own... would NEVER have happened! Last night I went to Manchester for a night out with about 3 hours notice... this wouldn't have happened before. I am thankful for everyday, I feel more independent, more confident and a lot more happier than before.... as someone I know very well says...

This is my life and I choose to love it!

Roadshow...

2010-02-14T10:59:00.000-08:00

I attended the NHSBT Roadshow in Liverpool on the 11th February...

My passion for organ donation and transplantation is still there (if you can't tell by now) in fact I think its stronger than ever. Since Jess died I feel I need to do as much as I can to promote the plight of others on the transplant waiting list, I know that this is what Jess would have wanted in her own words, which she said on many occasion about the Save Jess campaign "If this doesn't save me then at least it will help others." That was her, she was always caring about others, I want to be just like her, I do care about others but always feel I can do more. I want to keep campaigning, doing as much as I can for Organ Donation so that others don't have to lose their battle whilst waiting, so families don't have to go through what Jess' family are going through, and for selfish reasons, so I don't have to lose anymore friends along the way.

The roadshow was a perfect opportunity to do put all of the above into action! I spoke to people about why they should sign the Organ Donor Register, I told them my story (I always think this helps people to understand and see in person the difference a transplant can make)... I encouraged people to sign up there and then using one of the 3 laptops available. There were lots of volunteers on hand to answer any questions, including my transplant co-ordinator, Kate (who called me in for transplant) Here is a picture of me and her. She apologised for making me so upset when she called bless her!

The team were fab and made me feel so welcome, the press photographer came down and I and the team had to give the Tin Woman a heart... check out Save the Tin man if you haven't already and I also did a Radio interview from the van with Radio City. The purpose of the "Prove it" roadshow is for people to prove the believe in organ donation by signing up, 96% of people would willing receive an organ if they were in need of one but only 27% of the British population have actually put this into action by signing the register. A total of 380 people signed up there and then that day... so far the roadshow has signed up 4,400 people! I am glad I played a small part in making it happen... I will be attending the Manchester Roadshow on Friday which I am very much looking forward to.

Thats it for now... Love, x

Campaigning...

2010-02-10T10:49:00.000-08:00

So I have been quite busy on the old campaigning front recently, with the talks etc. I also have done two radio interviews over the past few days one was pre-recorded for City Talk and the other was a phone in show (that I knew about in advance) on Radio City 96.7 so rang into that.

The presenter is Pete Price... I have spoken to him before about Organ Donation, in fact the last time we spoke I mentioned Jess as it was in the lead up to Save Jess-tival. Pete is dead set against Organ Donation but is willing to talk about it, he never really says why he is against it, I think its because of all the myths and misconceptions floating around. He comes across really ignorant, I don't know if its his manner or whether he is just asking the questions that the public want to hear the answers to!

Anyway I think the interview went well, I found myself talking a lot rather than being asked questions... I think this is probably the best way to deal with Pete.

I am doing another radio programme at 7am tomorrow morning for Radio Merseyside 95.8... you can listen live here (if you are up that early!) The purpose of this interview is to talk about me, my story but also to talk about the NHSBT Roadshow that is coming to Liverpool tomorrow. I will be attending from 10am-12, talking to the media and the general public about Organ Donation and why people should sign up! I am really looking forward to it, I am hoping to attend the Manchester Roadshow which is on the 19th February... with Racheal Wakefield :) any excuse for a catch up and a gossip hey!

I start work on Tuesday 16th (which is my dads birthday sadly) it will be a 10 hour day and then I think I have a staff meeting too, so no birthday tea out which is a shame!
I will be working 20hours a week... 10 hours on a Tuesday and 10 on a Thursday... it will be tiring at first I guess but I am really looking forward to it! At least I have monday and friday off, so will have long weekends and will get to see Abigail still for one day a week! This will also be good because my clinic appointments are usually on a Monday (I told the manager about this in the interview, so she took this into consideration!)

Thats it for now. Love x

Donor Day 2010...

2010-02-08T14:28:00.001-08:00

Ok so you will all be pressing me for dates and more info... but the truth is I haven't got round to organising and putting any solid plans together.

So here is where you come in... Open forum... how do I make Donor Day bigger and better than last year?

Your thoughts?

Do you want to be involved?

I would love your ideas... I am meeting up with Oli Barrett my mentor at the beginning of March and so we will be having a brainstorming session and throwing around some ideas.

So get in touch... and get involved! Email me if you don't want to comment: holly@lltgl.org.uk

Thanks in advance

Final Farewells...

2010-02-04T14:06:00.001-08:00

I wrote a statement about Jess for the Battlefront team, they have put it on my page which you can view here.

There is also some video footage from ITV Meridian of Jess' funeral which can be seen here.

Its still hard to believe Jess is not here, Facebook is empty without her, my phone is empty without her and my life is more empty without her.

I will leave you with some pictures of the flowers we got Jess.

And all of the beautiful flowers...

x R.I.P x

Talking, Talking, Talking...

2010-02-03T11:06:00.000-08:00

I have done lots of talking in the past couple of days... Both professional talking... and gossiping!

On Tuesday I did a talk at Arrowe Park hospital (another one of my 101 goals - public speaking), it was in front of Donor coordinators, transplant coordinators and Intensive Care staff. I was a bit nervous but they were all lovely and made me feel at ease, there was only around 20 of them. I talked about my story, Live Life then Give life and life since my transplant. A fellow speaker was David Nix from the Donor Family Network it was great to catch up as I haven't seen him since The DFN meet up in September. I enjoyed giving the presentation (trying to make it humurous yet emtional) and the audience must have enjoyed it as I have been invited back to do 3 more throughout the year! (which I will attend if work permits, seems funny writing that!)

It was really interesting to hear more of the Donor Families side of the story as well as the Intensive Care Staff's view of how to break bad news. Some of these topics are discussed in this interesting Times article if you want to take a look. I can't bring myself to comment on it as I may let my mouth run away with itself... some of the comments about the article are so ingnorant! Such as transplants shouldn't take place becuase "the planet is already over populated" and "Organ donation is a money making scheme" I really would love to hear how these people would feel if them or one of their loved ones ever needed an organ transplant.

I have also been asked to attend the NHSBT roadshow in Liverpool, this will involve me talking to the media and encouraging people to sign the Organ Donor Register. In preparation for this I have been asked to do a pre-recorded interview for Radio City Talk 105.9 tomorrow at 3.45pm which will be aired on Sunday between 7-8pm. Hopefully it will go well and persuade people to think more about tranpslantation and Organ Donation.

Today I had a lovely afternoon meeting up with the wonderful Rachael Wakefield... she is currently waiting for a double lung transplant after fighting hard to get herself active on the transplant list.

You can read more about her story here. She is such an inspirational young lady, we have the same sense of humor and so had a right giggle! Although I may or may not have suggested lighting the candle in the middle of the table... but soon changed my mind once Rachy reminded me she was on her Niv (Non Invasive Ventilator) that was blowing out Oxygen at the time... oops! You wouldn't believe I got a double B in Science at GCSE!

We are going to make meeting up a regular thing, which is fab... I gave Rachy a photo album as a little present to open today (as well as a birthday present, which if you are reading this, you must save till your birthday missy!) so I am hoping we can fill this with lots of silly photos of our antics... and the start of a very long friendship!

Its definitely good to talk...

New Job!

2010-02-01T12:47:00.000-08:00

I am now employed...

What a scary thought! I can't remember if I blogged about my interviews or not... I definitely Facebooked about them and received lots of good luck wishes which really spurred me on so thank you for them!

I went for a formal interview on the 25th January which went ok, lots of questions were asked and I wasn't sure that I answered them in as much depth as they might have liked, thankfully they asked me back for a practical interview which I did on Friday. I had lots of fun, the kids were painting, building, singing and drawing. I read them (all 27) a couple of stories... which I think was quite brave as I have never worked in a nursery so haven't had to keep that many childrens attention before.

I got the phone call today that I got the job! I was so excited... I really can't wait. I have to take in my degree certificate on Thursday and discuss what hours I will be working. I will start off part-time and hopefully end up doing fulltime sometime this year!

I will be working at the Kids Unlimited Nursery in Warrington... its 1.5miles from my house so it will only take me 10minutes getting there, I will start off in the pre-school room ages 3/4 and see how I get on but I may be moved.

So there you go... one of my 101 in 1001 complete... I also acheived one on Saturday when I went to see the fabulous Jimmy Carr... he was very funny but extremely rude! He got lots of funny heckles and one man proposed to his wife in the audience!

In other news I am off to do a talk tomorrow at Arrowe Park hospital about me and my transplant! I am a bit nervous but I am sure I will be fine once I get there and get started. Luckily my Transplant co-ordinator and the Donor Co-ordinator will be there and I also will get to catch up with David Nix from the Donor Family Network again which will be nice.

Will leave you with a couple of pictures of me from today, we went out for an all you can eat chinese to celebrate me getting the job!

I certainly wouldn't have been fit enough to work whilst I was on dialysis and so Of course none of this would be possible if it weren't for my Donor and their amazing family who said yes to Organ Donation. Be a Hero today: Sign the Organ Donor Register!

Time to say goodbye...

2010-01-31T03:58:00.000-08:00

These blogs just get harder and harder to write.... I just can't find the words... they simply aren't there. I have written this blog about 5 times and deleted but I am just going to go for it.

The Wednesday morning we woke up in the Travelodge room, knowing that it was going to be one of the hardest days of my life. Mum and Dad went out to explore Margate while I took time on my own to get ready. I never go out without make up (vain or what) so today would be no different, I opted for no mascara and false eyelashes, pretty smart idea in the end....

Mum and Dad returned, we got changed (I put on my Jessica jewelry) and away we went. We pulled up outside the church and spotted Aunty P from the Donor Family Network and so we parked the car and went for a cup of tea in a local cafe, we were soon joined by Emily and Matt, we chatted away about Jess as we looked through the fabulous tribute book Em had made for Jess' family. Me and Em exchanged some presents, I gave her a sparkly frame with a picture of me, her and Jess in it and she gave me a gorgeous scented candle.

We left the cafe and headed for the church, conversation stopped and we came to a standstill as we saw Jess' beautiful pink coffin being placed onto the white horse and carriage... the horses baby pink plooms gently swayed in the breeze. Me and Em stood for a few minutes, holding hands with tears in our eyes...

We were greeted at the church by people that we had only chatted to via the internet, many people came over and introduced themselves to me, I must have seemed rude... I didn't really engage in conversation... I was in a little world of my own. We stood outside for about 15 minutes, not sure why this was, I just think people wanted to stand together and share memories or in our case make small talk... with Matt making inappropriate comments that made me giggle at the most inappropriate times... lets face it though Jess would have been giggling too, I am sure she would have forgiven me!

We headed inside and took our seats. I was sat inbetween Emily and Matt and my parents sat behind me with Aunty P... There was silence in the church, apart from a few late comers who clunked the big heavy church door which resulted in everyone turning round... after what seemed like hours... but it was more like 15 minutes... Savage Garden's - Truly, Madly, Deeply began playing (Jess' favourite song) and the undertakers carried the pink coffin down the aisle... From the first few notes of the song... everyone was in tears, it brought back memories of Save Jess-tival and memories of Jess herself. Her family followed behind and as her coffin went passed I spotted Jess' name on the back of it in a star... and beautiful pink flowers draped over the top.

Jess had chosen all the songs and hymms, we sang Let Me Be a Channel of Your Peace and Be Thou My Vision. A few days after Jess died Emily sent me a beautiful poem in the hope that it would bring me comfort, it really struck a chord and made sense to me, she also sent it to Jackie (Jess' Mum) this was read out at the funeral... the words are so appropriate:

What will matter is not what you bought, but what you built; not what you got, but what you gave.
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.

What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you're gone.
What will matter is not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.

What will matter is not your memories, but the memories that live in those that loved you.
It's not a matter of circumstance, but of choice
In the face of adversity you chose to live a life that matters

That last line particularly rings true with Jess... she will never be forgotten for her determination and inspiration.

Emily and Matt held my hand through the last part of the service, I was conscious that I was snotting all over them but they didn't seem to mind! I really couldn't of got through it without them.

The tears kept on flowing (I knew the no mascara was a good idea) Jess left the church to Kathrine Jenkins "Time to say goodbye" I get a lump in my throat every time I think of it (I hope the link works, I haven't listened to it myself, I can't, not yet)... and I will never be able to listen to this song in the same way now. It really was beautiful but heartbreaking and there wasn't a dry eye in the church.

We left the church just in time to see Jess being carried away by the horse drawn carriage... as they trotted off down the road we looked at each other and said right lets go to the cemetery, we then realised that none of us knew where it was, and none of us had a postcode for it... we jumped in our cars quick and thankfully caught up with the cortege. Jess' coffin was in sight the whole way there, it was a kind of comfort to know that we were all sharing her journey to her final resting place... she would have been giggling at the fact that the whole cortege went through on red lights (not without some horns papping and dirty looks from other drivers) I felt like saying this is Jess.... do you not know who she is...!!!

We reached the cemetery and gosh I was regretting wearing my patent black heels (Jess wouldn't have wanted anything less though) so I kept up the pace and walked... (it felt like miles) Em held my hand the whole way... we made it to Jess' final resting place and as we did the horse let out one almighty fart... another moment I am sure Jess would have found particularly funny! We walked over to the graveside and watched Jess' coffin as it was lowered into the ground... "Earth to Earth, Ashes to Ashes and Dust to Dust" was said... I have only ever seen this on TV programmes.... the tears flowed again. Jess' family threw pink flowers on to her coffin and started to disband, Jackie caught Emily's eye and broke down... she then looked at me gave me a kiss and the hugest hug... and we shed a tear together.

Matt had given me and Em a sunflower each and I brought two pictures... one for me and one for Em so we said our goodbyes and threw them on top of the coffin... as we walked away... mine and Em's heels got stuck in the mud and we could hardly move... Em blamed Jess for this, saying thats exactly what she would have wanted to happen! I couldn't help but smile. We looked along the big line of beautiful flowers and there ours were, it really was prefect, a white heart shape with a Pink J in the middle.

I caught the attention of Jess Dad and he gave me a hug... we stood around for a while... not knowing what to do... not wanting to leave. Jackie came up to me and Em and invited us back to the wake... Mum and Dad felt a bit awkward but Jackie made a point of saying they were invited and welcome... shes such a strong lady, we all know where Jess got her strength and determination from now.

We headed back to Jess' house... the last time I was there was when we filmed for Battlefront... it was so surreal to be there without Jess... pictures of her where dotted around everywhere. There were people everywhere but it somehow felt empty as Jess herself wasn't there! We didn't stay long but it was so nice to be asked back... I had a long chat with Jackie... I hardly knew what to say, but she made it easy for me, she was so relaxed and welcoming... as I left she thanked me for what I had done for Jess... I hadn't done anything! I felt like saying thank you for giving me Jess, for letting me be her friend and for everything she has done for me... I am a different person, a better person, for knowing Jess and I will never forget her.

Forever in my heart... rest in peace darling x

Special Jewelry...

2010-01-25T11:21:00.000-08:00

I was going to take some pictures of my Jewelry that the fabulous Danielle made me to remember Jess by... but she has taken some lovely pictures and posted them on her blog here so I will point you there instead. Jess really would love the pieces wouldn't she?

Other news... I went for an interview today at a local nursery, its actually the same nursery my niece Abi goes to! I think it went as well as it could do, the manager asked me questions, I asked her questions and I have to go back to do a practical interview on Friday from 9.30am-1.30pm! I won't find out if I have been successful or not until the following Friday!

I am setting off to Kent tomorrow for Jess' funeral, I have to go to Liverpool first to have some blood taken and then my parents will drive us all down... I can't believe that we are having to say our last goodbyes... still seems so unreal.

I know Jess will have the fabulous send off she deserves... and no doubt pink will make an appearance too!

The world doesn't stop...

2010-01-24T09:09:00.001-08:00

It's hard to think that the world doesn't stop just because Jess is no longer with us. I was speaking to my friend Sarah Milne on the phone the other day and something rang true to me... because I didn't see Jess everyday as she lived far away it almost feels as if she is still there. I think it will hit me more when we have to say our final goodbyes on Wednesday.

It was left to me to sort the flowers out for Jess (I am surprised I was trusted haha!) this was good as it made me feel like I was being useful and doing something to help. The flowers are from myself, Emily, Sarah, Matt and Pops. I chose a white heart with a pink J in the middle and pink ribbon around the edge of the heart... it had to be pink, nothing less for Jess!

On one of my blog posts about Jess the lovely Danielle made a comment... we got chatting over twitter and email and I said I would like some custom made jewelry to wear to Jess' funeral, perhaps with Jess initials on. Danielle came up trumps and my lovely jewelery arrived in the post... it's pink of course! I will take pictures and post them up soon... theres a ring, many sets of earrings... 2 broaches and a necklace! Jess would have loved them!

Other things that have been happening... I have got myself a Job interview at a local nursery, its actually the same nursery that my neice goes to! I am hoping that goes well, I need to get myself into work or I'll get bored! I am also going to be going down to london to stay with the lovely Charlotte Hogg from Engage First and she is going to teach me all she knows about networking, social media and campaigning... and I am sure a few cocktails will be consumed as well!

I have also signed myself up for a 250ft high, 100ft long zipwire from the top of the Royal Liverpool Hospital, to raise money for their eye unit and Linda McCartney Centre this will take place on either the 20th or 21st of March and I will let you know how you can sponsor me nearer the time if you would like to!

So I think that is it for now... I probably won't update now until after Jess' funeral... please keep her and her family in your thoughts this week and please sign the Organ Donor Register in Jess' memory! Thank you x

My 101...

2010-01-20T08:41:00.000-08:00

So here is my 101 list... If you can think you can help me out with any of them, then do let me know! I hope I achieve all of them or at least most of them and in the process make my donor and Jess proud! For each of the ones I don't manage to complete in 1001 days I will donate at least £2 to Live Life Then Give Life.

1. Go to Paris
2. Go to New York
3. Watch 26 movies, each starting with a different letter of the alphabet
4. Go camping
5. Complete a scrapbook
6. Read the whole of the Twilight Saga
7. Snorkel in the sea
8. Go to a music festival
9. Visit friends who I’ve promised I would visit
10. Climb Snowdon
11. Learn to play poker
12. Network
13. Go rock climbing
14. Go to a museum
15. Visit an Art Gallery
16. Watch a sunrise
17. Watch a sunset
18. Write a blog at least once every 2 weeks
19. Do a 5k
20. Swim a mile
21. Complete an adrenaline challenge
22. Learn to cook a Sunday roast by myself!
23. Lose weight
24. Sign people up to the Organ Donor Register
25. Go to the Ballet
26. Get a job
27. Lay in a field and watch clouds
28. Go kayaking
29. Help a stranger
30. Dye my hair pink
31. Give up chocolate for one month
32. Throw a dinner party
33. Go to see a comedian Live
34. Spend a whole day with my dad doing what he wants to do
35. Spend a whole day with my mum doing what she wants to do
36. Go ice skating with my brother
37. Go to a spa
38. Write a letter at least every other month
39. See a musical in the west end
40. Get a new Passport
41. Go on a family holiday abroad
42. Get my mum flowers for no reason
43. Go to the Zoo
44. Play Jail Break with Pops
45. Dust off my flute and play for one hour
46. Go on a date
47. Kiss a stranger
48. Get a tattoo
49. Get a massage
50. Read a Shakespeare play
51. Watch a horror movie
52. Spend 24 hours not using a computer
53. Spend 24 hours not using my phone
54. Go surfing
55. Bake Bread from scratch
56. Attend a murder mystery
57. See a band live that I’ve never seen before
58. Go to the gym at least 5 times a month
59. Kiss in the rain
60. Watch fireworks
61. See a shooting star
62. Take a risk
63. Tell my mum and dad I love them at every opportunity
64. Eat 3 things I’ve never tried before
65. Ride a motorbike/scooter
66. Take a photo everyday for one month
67. Move out of home
68. Build a snowman
69. Swim with Dolphins
70. Take a spontaneous trip
71. Make a new friend
72. Give up diet coke for a week
73. Teach my Niece something new
74. Get eyebrows waxed at least every other month
75. Sing Karaoke
76. Own a pair of Jimmy Choos
77. Raise money for charity
78. Go for a picnic
79. Build a bear for my niece
80. Leave a note in a library book for someone to find
81. Learn a poem by heart
82. Make fudge
83. Ride a horse
84. Eat in a Michelin starred restaurant
85. Stay in a Hilton hotel
86. Watch a film from the year of my birth
87. Ride a rollercoaster
88. Public speak
89. Go on a peddlo
90. Meet a famous person
91. Go to a fancy dress party
92. Carve my name on a tree
93. Go tubing
94. Visit Northern Ireland
95. Go to a proper cocktail bar
96. Watch a whole football match
97. Go on holiday with my friends
98. Cook a three course meal from scratch
99. Fall in love
100. Keep a diary of how and when I achieved the 101 goals
101. Go out for a meal on day 1001 to celebrate my achievements

You can keep up with my progress here. My finishing date will be Wednesday, October 17, 2012!!! I will be the ripe old age of 25! Scary!

101 Tasks in 1001 days...

2010-01-19T12:13:00.000-08:00

So the last couple of weeks has taught me that life is too short and we shouldn't take things for granted so when I heard about the Day Zero Project I thought I would give it a shot...

Day Zero is a unique challenge that inspires you to set and achieve your personal goals in life.

The Challenge:
Complete 101 preset tasks in a period of 1001 days.

The Criteria:
Tasks must be specific (ie. no ambiguity in the wording) with a result that is either measurable or clearly defined. Tasks must also be realistic and stretching (ie. represent some amount of work on your part).

Why 1001 Days?
Many people have created lists in the past - frequently simple challenges such as New Year's resolutions or a 'Bucket List'. The key to beating procrastination is to set a deadline that is realistic. 1001 Days (about 2.75 years) is a better period of time than a year, because it allows you several seasons to complete the tasks, which is better for organising and timing some tasks such as overseas trips, study semesters, or outdoor activities.

The website seems to be down at the minute but you will be able to keep up to date with my progress here. I will blog as much as I can about how I am doing and include photos as well!

I will let you know what my tasks are in my next blog...

Feeling...

2010-01-17T08:49:00.001-08:00

Helpless
Guilty
Angry
Sad
Lost

I want to text her. I want to speak to her.

I'm feeling like life is unfair at the minute, why did she have to be taken? Why did she get her second chance for it all to be taken away just days later? Why did I get my transplant before her? I could have survived years on dialysis, my situation wasn't life and death so why me? Luck of the draw... there is no rhyme or reason for these things.

I'm probably being selfish writing all of this down, but hey this is what blogs are for isn't it? If I am feeling like this, I can't begin to imagine how her family is feeling right now.

I received a christmas card off Jess before christmas, she was always thinking of others and insisted on sending me one, I told her not to bother and she replied Yes I want to, you are my friend. Jess was typically like that, always caring for others, asking how you are when she was the one struggling and needed the attention. This will be the last card I get off Jess... the day I received it I typed a twitter update saying please don't let this be the last christmas card Jess sends me... encouraging people to sign the Organ Donor Register so this wasn't the case...little did I actually know that it would be. I will now treasure this card that she took the time to write to me.

A couple of weeks ago after she received her transplant I bought Jess a cheap tacky present, It is now sitting on my desk, its hard to know that she will never get to see it. (It might be best that she doesn't it was pretty cheesy!)

As you can probably tell I'm finding it hard to write everything down that I want to, its hard to find the words.

I've bought my first ever with sympathy card... I should be buying Jess a Happy transplant card! I've had to dig out a black dress... I should be getting out a little black dress for us to go out together not to be going to her funeral!

Even though she is no longer with us, she is still doing her thing and raising awareness about Organ Donation... see some articles here.

This is how I will remember her, always smiling, never complaining.
Courageous, inspiring, generous, caring, funny.

Song of the day today is I Wish by R Kelly, (the chorus) with the lyrics...

"I know you're in a better place, And you know I can see your face. I know you're smiling down on me, Saying everything's okay."

I'll be missing you...

2010-01-14T10:33:00.000-08:00

I don't even know where to begin... I have never felt so down, I try to put on a brave face but inside I'm heartbroken. Heartbroken because I've lost a dear friend, heartbroken for her family, and heartbroken for all the things she will never get to do. As I write this, I am listening to I'll be missing you and tears are running down my face. These particular lyrics stand out above all others... "Till the day we meet again, In my heart is where I'll keep you friend. Memories give me the strength I need to proceed... Strength I need to believe."

Jessica died peacefully on Tuesday (12th Jan) with her family by her side. She was just 20 years old. I still can't believe that I am actually writing it, I don't think it has fully sank in yet. That I will never get to see her again, hear her voice or have a laugh together.

Jessica had received her long awaited double lung transplant a couple of weeks ago but the wait had been too long and her body wasn’t strong enough to cope. She had been awake following the operation, and was aware that she had her transplant; she got her dream that she had been waiting for 4 ½ years but she will not be able to live it due to major post transplant complications. I am pleased in a way that she was aware that she had had her transplant, she probably felt relieved and maybe even started thinking about thinks that she would be able to do in the future... I hope this gave her some comfort.

We became close during and after the filming of Battlefront and I will always treasure the memories I have of her, I am so proud to be able to call her my friend. We had plans together for when she got her call, things we would do...

She was going to come and visit me, I had already thought about where I would take her (shopping obviously) and what we would do. She said I could visit her anytime for walks and an ice-cream on the beach (I so wish we had lived closer I could have taken her up on this offer.) I told Jess that I would do the Hydroactive Addidas Challange this year with her when she got her new lungs, so I determined to do it this year (yes the whole 5k, maybe not running) in memory of her.

So many things left undone... I wanted to see her live her life, I wanted to see her without her oxygen on. I wanted to laugh till we cried (for the right reasons this time), I wanted to sample a whole cocktail menu with her... I wanted to dance till our feet felt like they were going to fall off... But this will never happen.

The world seems different right now, its lost a very special person. I walk past shoe shops, thinking which ones she would like... I hear songs on the radio that remind me of her, yesterday I heard Glorious by Natalie Imbruglia and today Truly, Madly, Deeply by Savage Garden...

Jess touched everyone’s lives that she came in contact with. Her death won’t be in vain; during her time waiting, she inspired thousands of people up and down the country through her campaigning, incredible attitude and passion for life.

Jess’ wait was just too long, and I intend to make her proud and continue my work with the campaign and the Charity Live Life Then Give Life, for which we were both advocates, to try and change the world of Organ Donation, so 3 people a day like Jess don’t die needlessly. If you do one thing today... please sign the Organ Donor Register in memory of Jess.

At 9pm Yesterday hundereds of people accross the country raised a glass to Jess, I set off a floating lantern... it looked beautiful floating up in the snowy sky with a message to her.

Of course my thoughts are with her family and everyone who knew her at this sad time.

“The stars that shine the brightest burn the fastest”.

Rest in peace beautiful lady... you can breathe easy now. Thinking of you every day & Love you always, Holly x

PS – I promise to be less of a kidney person now Jess x

Jess

2010-01-13T01:24:00.000-08:00

I can't bring myself to write about the fun we had... and the plans we had... will leave that to another day when I am more composed. Until then...

Breathe Easy Jess, you really were one in a million and will be sorely missed by everyone who loved you x

Helpless...

2010-01-11T01:48:00.000-08:00

Feeling very helpless as Jess is currently in quite a bad way, things aren’t looking good as she has had a major setback. Get updates on how Jess is doing and show her some love on her Facebook group Jessica Wales Rocks My Socks! She needs everyone’s thoughts and prayers right now.... more than ever.

Now Jess... get your arse in gear and show the docs, your family, friends and me... what you are made of! Keep fighting sweetie... Much love always x

5 years ago...

2010-01-02T01:27:00.000-08:00

I'm still feeling in reflective mood seen as its new year... I think I can be forgiven!

It's a whole 5 years since I was diagnosed... how time has flown! I was told on the 3rd January 2005 that I had kidney failure and on the 5th January 2005 I started dialysis... Time stood still for a little while so we could all come to terms with it... I took a break from college and gave up the job I loved (working at my local cinema), my parents gave up work to look after and support me.

So many things were different in my life before that day:

I went to college
I had a job
I didn't drive!
My brother wasn't married
Abigail didn't exist
I hadn't met my University friends!
I hadn't heard of Live Life Then Give Life
I hadn't heard of Battlefront
I hadn't had any contact/experience with the media
I had visited number 10 - but only a fake version at Granada Studios!!!
I only knew what dialysis was because I had watched Kirsty from Home and Away just start it
I only knew what Organ Donation was through signing my driving license
Ironically, before I was diagnosed I watched the channel 4 documentary on Emily... who knew that In 5 years time I would be able to call her a friend!
I was thinner!
I had never had my blood pressure taken
I had never spent a night in hospital
I had never had blood tests
I didn't have any scars
What was Twitter?
In fact I don't think I even had Facebook - how did I survive!?

In the world things were different....

We had a different pope
We had a different Prime Minister
We hadn't won the 2012 bid for the Olympics yet!
The London underground bombs hadn't happened
Micheal Jackson was still alive
There was no recession

In Januaray 2005 the number of people on the Organ Donor Register reached 12,000,000 today 16,754,593 are on the register as I type this... I hope to be typing (In another 5 years time) that the whole 96% of people who agree with Organ Donation have signed the register as well! (who knows where I will be... maybe a house and man... one thing is for certain I will still be campaigning and I will still have a love of shopping, specifically shoes and handbags!)

On 5th January 2009 I wrote this blog about the day I got my call for transplant! Most of the significant events in my life happened during 2009 as I wrote about them in my last blog...
Other highlights or significant events of the past 5 years... Going on the Transplant waiting list (Aug 2005) meeting my university friends (2006), Andy and Fiona getting married (2007), Starting this blog (well my life on dialysis blog, Jan 2008, my first ever post here), Abigail being born (Sept 2008) and me receiving my transplant (Oct 2008).

Me being diagnosed with Kidney Failure... 5 years ago... has totally changed me as a person (for the better I hope) I became a stronger person, I grew up (a little bit) but my confidence did take a knock. I found reward in getting out there and trying to make a difference, I would never have contemplated doing this before, I was probably too wrapped up in myself (shopping no doubt). Me receiving my transplant and being given a second chance has changed me again... my confidence has been regained, I have met more amazing people, I have done things I thought I would never achieve... such as graduating!

Most importantly I realise what I was taking for granted 5 years ago...

I can walk down the street, go shopping without feeling tired. I can be spontaneous, grab my car keys and go out whenever/wherever I want. I can enjoy time with family and friends, I can eat what I want and drink what I want! I can go to the gym... (although I may complain about it)... I can experience a hangover...and a million other things!

This wouldn't have been possible with out the support of my fabulous family and obviously my donor and their special family that said yes to Organ Donation at their time of grief, I am and will be eternally thankful.

Anyway I hope this blog makes sense... What I am trying to say is I have come full circle, I am enjoying life like I am 17 again (no pun intended regarding the film!) The world has changed and I have changed as a person. Being diagnosed with Kidney failure was pretty crap... spending time on dialysis was even crapper (is this a word?) but I wouldn't change it for the world... it makes me who I am today! :)

New years goals and resolutions...

2010-01-01T01:21:00.000-08:00

Happy New Year!

Ok so last year my goals were to...

To make the most of my “Gift of Life” and enjoy being free from dialysis
To go on holiday (I haven’t been abroad since I started dialysis)
To go back to Uni, complete my dissertation and hopefully graduate with my friends
To visit Emily T in London and go shopping!

I did all of these to some extent, I definitely enjoyed being free from dialysis and made the most of it. I went on holiday to Devon, first holiday with Andy, Fiona and Abigail. I went back to uni, completed my dissertation and graduated with my friends! I also went to London for the advocate weekend and saw Emily... although we didn't have any time for shopping! :(

Highlights of 2009.... It has been a fantastic year... 2010 has got a lot to live up to! (In no particular order)

Donor Day
Getting thousands of people to sign the register
GMTV, Sky News and Metro Newspaper
The airing of my Battlefront programme in May/October
The quote of support from Gordon Brown
Donor Family Network meet up
Dissertation!
Graduation
Vinspired National Award
Abseil for Live Life Then Give Life
Parties and many nights out
Save Jess-tival
Making new friends, Catching up with old friends
I stayed away from home, in London and Huddersfield
Visiting Downing Street - meeting Sarah and Gordon Brown
Jess receiving her transplant

This years resolution is to continue making the most of my Gift of Life, making my Donor family proud... also I want to get fit, go to the gym more and lose weight!

Other plans for the year are...

To continue to raise awareness about Organ Donation
Continue my work with Live Life Then Give Life
To go on holiday abroad
To get a job
To go away with friends for a weekend
To go to Ireland for a wedding in April
To Organise and pull off Donor Day 2010
To see Peter Kay, Jimmy Carr and Derren Brown
Go to London for pleasure not work.... to see Em
I am coming to see you too Pops... so a trip to Newcastle!
MORE SHOPPING!

Thanks for your love and support in 2009, especially to my wonderful parents... I've certainly had an amazing time!

Heres to a healthy and Happy 2010 with an increase in the number of transplants taking place and less people losing their fight because of the lack of Organ Donors. Hoping all my friends get the second chance I have been given...

Please make it your New Years Resolution to sign the Organ Donor Register!

My 2009

2009-12-31T06:39:00.001-08:00

Have a read of the blogs below... have had a blogging marathon recently...

1. What did you do in 2009 that you'd never done before? ... So many! I went on TV, I went down to London on my own... went away with friends on my own... had my first hangover! What a year!

2. Did you keep your new years' resolutions, and will you make more for next year? .... Last years resolution was mainly to make my donor and my donor family proud... I hope I have achieved this and continue achieve this every single year! Next year... I want to get fit, go to the gym lots more and lose weight! My Mum and Grans resolution for me would be to find myself a fella... will see about that one!

3. How will you be spending New Year's Eve? ... I will be spending the evening with friends... for the first time ever! I always spend new years with my parents, this will be the first year I will be well enough to spend it away from home! It will be a house party and then going back to my best friends new house and staying there the night!

4. Did anyone close to you die? ... A good friend I got to know through transplant community died this year, she was so young and died so needlessly all because a transplant didn't come in time!

5. What countries did you visit? ... Ireland :)

6. What would you like to have in 2010 that you lacked in 2009? ... I can't actually think of anything for this one... ? 2009 has been one of the best years ever...2010 has got a lot to live up to! I think my Mother would answer that I need a man on this one.... not to sure myself haha!

7. What date from 2009 will remain etched upon your memory, and why? ... 7th April... Donor Day! What a fantastic day! Will certainly remember that day till I die... met some great people, appeared on GMTV, Radio, In newspapers... and most of all got thousands of people to sign the Organ Donor Regsiter on this day!

8. What was your biggest achievement of the year? ... Graduating would be number one... the National Award for volunteering would be number 2!

9. What was your biggest failure? ... Hmmm this is a toughy... is it big headed if I can't think of anything? I'll come back to it if I do...

10. Did you suffer illness or injury? ... After a night out I often wake up with random bruises, I don't know where they come from! I seem to fall over a lot... my friends will vouch for this... I am sure my mother would also tell you the story of me being injured by an automatic door on Christmas day this year... Also still having regular check ups at the hospital but that is to be expected!

11. What was the best thing you bought? ... Blackberry!!! So useful... text, phone, email, facebook and twitter all the move... perfect!

12. Where did most of your money go? ... I haven't been that extravagant this year... probably clothes...

13. What song will always remind you of 2009? ... I have no idea... there are sooo many! I have spent a lot of time going out with my friends clubbing this year so so many memories attached to songs! The prodigy - Omen for halloween... Black Eyed Peas - I've got a feeling!

14. What do you wish you'd done more of? ... Seen more of my friends in London... this year I will come and stay with you Emily!

15. What do you wish you'd done less of? .... Hmmm shopping? Would have saved me money! Partying = less hangovers! I don't have any regrets though so nothing really!

16. What was your favourite TV program? ... Sucker for reality TV, so Big Bro and X factor! Loved the Royle Family on Christmas day, I was crying with laughter.

17. Do you hate anyone now that you didn't hate this time last year? ... Nope

18. What was the best book you read? ... I'm in the middle of Twilight at the minute.... last book I completed was My Sisters Keeper I think.

19. What was your greatest musical discovery? ... The Courteeners - went to a gig of theirs in November... So good live!

20. What was your favourite film of this year? ... The Time Travellers Wife - had me in tears... Loved New Moon too

21. What did you do on your birthday? ... Takeaway and drinks at my house with friends and then off into town for cocktails and dancing... perfect!

22. What kept you sane? ... Friends and Family :) Thank you!

23. Who did you miss? ... I miss the people that don't live near me... mainly people from Live Life Then Give Life.

24. Who was the best new person you met? ... I met so many great and inspirational people this year, they will be friends forever! Oli Barrett and Amy Maclaren my Battlefront Mentors, fab people at the Donor Family Network... People from Live Life Then Give Life... specifically Pops as we have the same sense of humour, chat every day and get on like a house on fire!

25. Tell us a valuable life lesson you learned in 2009: ... Oooo theres got to be two... Its not what you know, its who you know... NETWORKING (thanks Oli B)!

Don't take things for granted, live life to the full, I certainly have!

Next blog will be in the new year! I will look back more on 2009 and let you know what I plan to do in 2010! Until then heres to a happy and healthy new year! x

First lines of 2009

2009-12-30T06:20:00.000-08:00

First lines of the first blog of each month for a whole year... may make no sense what so ver but hey... lets have a go!

January - The New Year got off to a great start as I received a phone call on New Year's Eve to say that my blood results are the best they have ever been!

February - So another busy week!

March - Ok so I've been neglectful of my blog recently... but with good reason!

April - We need to get people together for a rather awesome photocall!

May - So the dissertation is done... Finally! All 10,007 words of it bound and submitted, what a relief!

June - Yes it has been a while...

July - 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!

August - Just a quick one to say all is well.

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

October - 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.

November - 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!

December - Not on cloud 9, even higher... I am on Cloud Number 10.

The greatest gift of all at christmas...

2009-12-29T02:21:00.000-08:00

This blog seems to be taking a back seat... but this only means one thing... I am enjoying life and having lots of fun... spending less time sitting in front of a computer!

I have done various bits and bobs to raise awareness of Organ Donation over the past few weeks, the 2 main ones that stick out are the Radio Merseyside programme called Life Begins. The presenter was called Ian Kenyon and it was the most relaxed interview I have ever done! He asked all the right questions, gave me plenty of time to answer and I said everything I wanted to say!

Another opportunity to raise awareness came about when the PR lady from The Royal Liverpool Hospital got in touch, they wanted to do an article about 3 people affected by organ donation. A person who was waiting for a transplant (turns out I used to dialyse with him when I was first diagnosed in 2005), a doctor who works in ICU and me, being a recipient! Mum took me up to the Royal a couple of weeks ago for us to have our picture taken together... 3 very different people, affected by organ donation in very different ways. The article hasn't been printed in the Liverpool Echo yet, I will let you know as soon as it is so you can get yourselves a copy, I will be interested to see how it is written up and how it is linked together.

I had a lovely christmas, it was a quiet one really. My Gran is in hospital at the minute, this will be the first christmas she hasn't spent it with us, although we did go and visit her and take her some presents. My bro, his wife and Abi came round in the morning to open presents she was so overwhelmed by it all but it was so lovely to see her running about, she is so much more aware of what is happening this year!

I got lots of lovely presents, perfume, make up, smellies, chocolates and girly stuff! This was the first year that I could really let my hair down, no restrictions - diet or fluid. Last year I was still recovering from the op and my energy levels weren't back to normal... this year I managed to do so much in the weeks leading up to christmas it was fab including lots of nights out with my friends! Not forgetting the only reason I can do all these things is thanks to my donor... who is never far from my thoughts but especially to the donor family at this time of year.

The greatest gift of all this christmas came on 27th of December, a little bit late but I can't complain... it was that Jessica Wales got her long awaited double lung transplant! What a miracle!? That morning she took a turn for the worst and things didn't look good... that night some special person gave Jess a second chance, their family said yes to Organ Donation and gave Jess the gift of life! I still get goosebumps thinking about it... Jess is such an inspirational you lady and I remember writing this blog back in September... things were worse than this on Sunday Morning... but now, things are looking better! Jess has a fighting chance, she is still on a ventilator and fully sedated (which is not unusual for lung transplant recipients) this is giving her body time to rest and recuperate as she was so ill before! Keep up to date with Jess' progress here 0n her facebook group.

What a way to end 2009?!

Jess we are all thinking of you and your family and sending lots of love to you all....

You could save lives like Jess's, give the gift of life... sign the Organ Donor Register.

Jessica Wales

2009-12-27T17:13:00.000-08:00

*STOP PRESS*

Jess...who I have talked about on this blog on numerous occasions... is IN THEATRE HAVING HER DOUBLE LUNG TRANSPLANT RIGHT NOW! (after 9 false alarm calls during her 4 year wait!)

Things were looking pretty bleak this afternoon and I thought I may have to face facts that Jess may not have much fight left in her... but at the 11th hour, the call came! I was crying with worry this afternoon... and now crying with joy!

Jess has been a huge help to me and the campaign, she is a truly inspiration young lady and deserves this second chance at life so much.

I am of course thinking of the donor and their family as well as Jess and her loved ones.

Updates on Jess and me in my next blog!

EDIT: Morning... (9.40am) Jess is just being moved to ITU... this is all I know at the minute... but it's a good sign! Keep her in your thoughts over the next few days x

2009-12-25T10:13:00.000-08:00

It's not what you know...

2009-12-09T01:48:00.000-08:00

... but who you know!

Remember back in February (its ages ago, you may not) I met the founder of Bebo, Michael Birch... After being introduced to him by Oli Barrett during filming for the Battlefront Programme. Michael is a lovely down to earth man who I quizzed about how to maximise the use of social networking to aid my campaign. He answered all my questions and was keen to get involved... he suggested a viral website that would get passed around social networking sites in the hope of people signing the organ donor register.

Well I didn't think anything would come of it... but to my surprise... it has! Recently when Jess was admitted to hospital (Just before the Save Jess-tival) I and many of my friends sent out an email to our contacts to tell them of Jess's story to encourage people to think about Organ Donation. I thought I would add Michael to this list... I forgot all about it and a few weeks later an email arrived in my inbox saying he had designed a website based on Jess' story... one that could be passed around social networking sites and hopefully reach thousands of people!

So if you want to check out Michael's handy work, why not pop on over to Help Jess Breathe and show your support by passing it on to family and friends.

Together we can make a difference... we can Help Jess Breathe.

Your Job For The Day...

2009-12-08T13:42:00.000-08:00

I didn't get to do the BBC Radio Merseyside show as I was unwell yesterday, at first I thought it was side effects of my Immunosuppresant drugs, they are tinkering with the doses! For those of you geeks out there (I mean transplant patients, haha) I am now on 1.5mg of Tacrolimus twice a day (which was reduced from 2mg twice a day) and I'm on 500mg of MMF twice a day (I was on 250mg 3 times a day). I thought me feeling unwell was due to the higher dose of the MMF, turns out my neighbour had a stomach bug so maybe it was just that!

I'm feeling much better today, not totally well but I'm a lot better. I am due to get bloods on Thursday morning with the good old 24hour aswell (this totally puts plans for going out off the cards). Anyway so I was really disappointed about that but they said they will try and fit me in another time which is good of them.

I've done a few other bits and peices for the media in the past couple of days, one for a womans mag (not sure which one and when/if it will be released) and the other is for a french magazine that will be released next year, this is through a contact from Battlefront and the magazine helps French kids learn English!

In other news my good friend Emily Thackray has appeared in a short documentary by Award winning film-maker Rob Hindle its for Channel 4's 3 Minute Wonders, an entry for a competition called "It's good to know..."

The film, "I'd Give You One" is now up on 4docs website. It is extremely hard hitting and follows Emily through her wait for transplant and her recovery.

It starts with a choice that Emily had to face, a choice that is hard to comprehend...
Either we weld your lungs to your chest cavity so that you can breathe, but that will be permanent and you will die within a year; or you can wait to have both your lungs transplanted, which may never happen and if it does, you are likely to die before you ever get it...

So your Job for the day...

If you can, please can you register so that you can "love" it (by clicking the tab with the heart next to the screen) - the more love it gets, the higher up the list it goes. The winning documentary will be shown on Channel 4.

Thank you!

Campaign news....

2009-12-06T04:08:00.000-08:00

The campaign is still in the forefront of my mind at all times, although I may not blog about it as much as I should.

I do as much as I can to help the charity Live Life Then Give Life and this is a great way to keep my finger on the pulse about what is going on in the transplant community and the world of Organ Donation. I am thrilled that Vinspired have given the winners of the National Awards the opportunity to donate £1000 to their favourite charity... of course I have put forward LLTGL and hope that they will be accepted. Its great that I can give something back to them as a thank you for all they have done for me, whilst I was waiting for my transplant and also what they continue to do for me, supporting me in my campaign.

There have been a few articles on a local website about me that I have only just come accross... One about me graduating which is here and one about me winning the National Campaigning award here. Apparantly I was in the Manchester Evening Newspaper as well but I didn't get a chance to see that which is a shame!

I also have the opportunity to go on to BBC Radio Merseyside tomorrow to discuss all of the above and hopefully will get to mention the Downing Tweet party. It is for a programme called "Life Begins" about how peoples lives change after a significant event in their lives and how they overcome adversity. I am really looking forward to it, it should be around 10minutes long and will take you right back to the beginning of when I was diagnosed, dialysis, my transplant, the campaign, graduating and the award! (Hoping I have enough time). You will be able to LISTEN LIVE here, I will be on at around 6.45pm.

This is a bit of a mixed up blog... but one thing is for sure I am still just as passionate as ever to campaign about Organ Donation, I want to make a difference (even if it is only small) and I want to take The Gift of Life campaign forward to bigger things!

The mingling at Downing Tweet makes me want to get my bum in gear and get organising Donor Day 2010! (If you are a new reader, here is a bit about Donor Day 2009). Oli has suggested a meeting in the new year to discuss the campaign, ideas and Donor Day itself so if you think you can help at this meeting then get in touch (@thegiftoflife).

Of course there will be a call to action to the public to get involved, to tweet, to facebook or to even run their own Donor Desk. I really hope it is bigger and better than last year... with the help of YOU we can really make it something, get people to think about Organ Donation, talk about it and ultimately sign the organ donor register!

Sign Up, Spread the Word, Save Lives.

Together we can do it.

On Cloud Number 10....

2009-12-05T14:03:00.000-08:00

Ok so the title is a clue...

Not on cloud 9, even higher... I am on Cloud Number 10.

Let me explain. I shall go back a couple of weeks when I got a message on twitter (I'm @thegiftoflife, if you are interested) from the Prime Minister's wife the lovely Sarah Brown (@SarahBrown10). The message said can I please have your postal address as I would like to send you something... of course I obliged, wondering what it would be? I did not for one second think it would be an invite to Downing Street but that is EXACTLY what it was!

An invite for little old me to go to Number 10! I couldn't believe it, but there it was in black and white!

It was an invite from Sarah to her Downing "Tweet" party in support of the Million Mums campaign by the White Ribbon Alliance. If you haven't checked out the website, do so here. It is a great cause and aims to prevent the deaths of women in childbirth as one woman dies every minute of every day somewhere in the world due to pregnancy or birth complications. So please show your support.

Back to the evening! My parents kindly drove me down and we met up with my Battlefront Mentor Oli Barrett (@OliBarrett on twitter) who was as lovely as ever, bought us champagne and we got chatting about next steps for the Gift of Life campaign.

Oli is an old hand at going to Downing Street and so talked me through all the security stages... I think he could tell I was nervous but so ecstatic to be there! We knocked on the big black door (not before Oli did one last tweet) and then we were in, handing our phones in and people kindly taking our coats.

We headed up the famous staircase with all the past Prime Ministers pictures adorning it (Yes it was just like Love Actually) We entered the Pillared Room where the networking began and who best to show me the ropes than Oli himself! It didn't take me long to spot my good friend Emily Thackray and photographer Sarah Milne. I was a bit nervous about being in a room full of complete strangers but soon got into the swing of things (with the help of a few glasses of wine). I had been twittering with a few people that were also going to be there, including the fab Henry Elliss (@HenWeb) and so it was great to meet in person! You should check out this blog of his, where he is collating all the pictures and blogs from the night. One of the highlights for me was Beverley Knight (@Beverleyknight) singing "Shoulda, Woulda, Coulda" (one of my favourite songs of all time) and "Gold" barely 6 feet away from me, with no mic. It gave me goosebumps and brought tears to my eyes. I couldn't wait to meet her, she was so lovely gave me a hug and a kiss, she was so down to earth!

Of course THE highlight of the night was speaking with Sarah herself and her husband, Prime Minister Gordon Brown and inevitably we talked about Organ Donation! We posed for a photograph, which is something to treasure and definitely deserves a frame! (Although I do look like a child in a sweet shop, I really was that excited).

At various points throughout the night, it came back to me where I was, I still can't actually believe it all happened! Things like this don't happen to Holly Shaw from Warrington! It was THE most amazing night I have EVER had! I was mingling with stars, MPs, journalists, business people and entrepreneurs!

The famous people I met included...

Dr Christian Jessen (Embarassing Illnesses Ch 4)
Kirstie Alsop (Location, Location,Location)
Claudia Winkleman
Krishnan Guru-Murthy
Richard Bacon
Brian Friedman (Cheoreographer from X Factor)
Peter Serafinowicz (Who is now following me on Twitter!)

My confidence grew throughout the night, I actually approached Peter at the end myself (yes we are on first name terms now! Ha!) and told him that I had to say Hi before he left! At one point I was having a conversation with 5 other (lovely) people that were complete strangers. They were asking me about my campaign and were geninuly interested in it which was fantastic. I would never have had the confidence to do this before! I did find that I introduced myself almost as Holly "Kidney Transplant" Shaw, however it was a great conversation starter and a way to get talking about my campaign! It was great meeting the celebrities from the night, but I feel that the other connections I made whilst at Number 10 are people that I may be able to call friends or colleagues in the future. I hope they might be able to help me out on Donor Day 2010 and one day I may even be able to return the favour!

I can't believe the path my life is taking, yes kidney failure is a rough hand to be dealt but I'm not going to let it stand in the way of what I want to do. I wonder what direction I would have gone in otherwise? I wouldn't have met all these wonderful people, I wouldn't have been given the opportunities I have been given and most importantly I wouldn't be the person I am today! (Little old Holly Shaw from Warrington)

A blog I didn't want to write...

2009-11-30T11:50:00.000-08:00

Volunteering in the field that I do, loosing someone I knew because their transplant didn't come in time was bound to happen. I woke up to the news that a young 22 year old girl, A, had died. I am not claiming to know her well, but we chatted often online... she was always interested in what I was up to and how my campaign was going, she rarely whinged or moaned about her situation but it was clear to see she was struggling.

It just shouldn't happen, A should have got her new lungs. It makes me angry because its not like it was an accident that she died, it could have been prevented, if more people think about their own mortality for two minutes and sign up!

It was such a shock to hear the news, as just 10 hours earlier she had posted a status on facebook which read "is off.. to have words with her lungs for being attention seeking!! There's really no need...pull your selfs together... and breathe!!"

This is what scares me... It shows how quick it can all happen. This makes me think of Victoria Tremlett and Jessica Wales, I always presumed that if someone was losing their fight for life, the wouldn't be online posting things on facebook, but it just shows you how fast things can go down hill. Victoria and Jess update their facebook regularly and this to me meant they were still holding on and staying strong... A losing her fight so quickly dismisses my theory!

I do not want to be writing another blog like this anytime soon! Please Please prove you believe in Organ Donation, in memory of A and for the sake of Tor, Jess and the other 9000 people on the transplant waiting list... give them the second chance that A didn't get, a chance to live a life that they deserve! Please Sign Up to the Organ Donor Register.

I will miss my chats with A and hope that she is breathing easy now wherever she is.... R.I.P x

And the winner is...

2009-11-29T06:23:00.000-08:00

Arghhh I still can't believe it, I actually won the National Shout award for Campaigning! I don't campaign to get recognition, I campaign to make a small change in the lives of other people... especially those waiting for a transplant.

It was a fab evening, I travelled down with My Mum, Dad and Brother by car, we arrived at the hotel and had plenty of time to relax before getting ready for the evening! Me and Mum got on the coach to the O2 arena whilst Dad and Andy had food and met up with Pops! Mum was my dinner guest and so we had some lovely food, you could have one of every main course (as they were only tiny portions) I had tai chicken, Duck, Sausage and Mash and finished with 2 portions of Baileys chocolate moose (Pops came down after the awards and had about 5 of these).

Before the ceremony started I met Lil Chris and James Caan and had my picture taken with them both, they were both so lovely and didn't mind at all, in fact James was in the middle of eating some mini Pizzas as he was walking round and still posed for photos!

The Ceremony itself was great, each of the nominies stories was projected onto screens around the arena, a celebrity would come on and present the award to the winner. The presenters of the show were James Redmond and Jamelia Jameel, they were great together!

So the Shout category came up, the video was played and then this video camera was heading towards my table... my name was announced, I was so shocked... the other nominees (HIV campaign and Cancer Campaign) were amazing and had done a great job! I made my way up to the stage (followed by the camera) and was presented my award by a lovely chap (I can't think for the life of me of his name, he was an MP? or from the Cabinet? I'm not sure) anyway I didn't have much of a chance to make a speak as I only got asked how I was feeling to which I replied Shocked, in a good way! Not very useful... so here is my chance to say what I would have said had I not been so nervous/excited/shocked!

I would have accepted the award on behalf of everyone still waiting on the transplant waiting list, and those that lost their fights because their chance didn't come. I would have thanked my family, friends and everyone that had helped me in my campaign. Lastly and most importantly I would have thanked my donor, as without them... the campaign would not have happened and I wouldn't have been at the awards!

There were 9 other awards given out, all to worthy winners... After the ceremony some of the tables were removed to make way for the dance floor! Mum, Dad and Andy left (with my award in tow, as I didn't want to lose it) and this is where me and Pops came into our own, throwing some shapes on the dance floor while the drinks were flowing! Tynchy Stryder, Lady Sovreign and some Djs did some sets and a great time was had by all! You can see some of the official photographs here.

Me and Pops got on the coach back home along with 2 goody bags each from the night... loads of people got straight off the coach when we got back to the hotel and went straight to the bar, so not wanting to seem rude me and pops joined them! We ended the night on some shots of sambucca (seemed a good idea at the time, they were bought for us)!

It really was amazing, still can't quite believe it all happened! Thanks to Pops for coming down to share the night with me, as well as my family, it's a night I won't ever ever forget and I hope I have and continue to make my donor proud with the volunteering work that I do!

I will leave you with some pictures....

Me and My Mum before Dinner

Me and Dawn Butler MP

Me, James Caan and Tamina Lawrenson (who was on the Vinspired Judging Panel)

Me and Lil Chris!

Me and the Family after receiveing the award!

Me and Pops!

Me and the Family again (all looking rather proud)

The after party begins... and so do the drinks...
Me and OB from Hollyoaks!

Me and Max from Hollyoaks

Poser

Drunkerds!

Sorry for the picture overload... there is more if you CLICK HERE!

Thanks for your continued support x

I'm going to London...

2009-11-26T00:43:00.001-08:00

... to buy heat magazine?

Well not entirely, although I may purchase it to read on the way down. I'm off to the big smoke for the Vinspired National Awards! I won the regional Shout Award and was then shortlisted (along with 2 other people) for the National Shout Award for Campaigning!

Its all very exciting, there will be celebrity guests there including, Tinchy Stryder, James Kann, and Gabriella Cilmi amongst others...

One of my balcony guests is the lovely Pops Barham from Live Life Then Give Life... although we've only met twice in the past, we get on like a house on fire (in other words, when we are together we never shut up), you may remember the x factor incident from the advocate weekend? well that was Pops' idea! I feel like I've known her for years, we gossip everyday on facebook so It will be fab to catch up in person!

Will do a proper update when I get back, as lots of things have happened since the last post...

Much love x

Abseil for Life...

2009-11-23T11:07:00.000-08:00

Sorry I haven't posted sooner... The abseil seems so long ago.. I can't believe I haven't told you all about it... instead I am going to point in the direction of the Live Life Then Give Life Blog as they have done their own news item on it.

Here is the post abseil press release which I sent to local press, I haven't heard anything back yet which is a bit disappointing.. oh well it was worth a shot.

22-year-old transplant patient abseils 100ft to raise funds and awareness for Organ Donation campaign

‘Abseil for life’ team calling for more people to sign the register

Last week 38 people launched themselves down a 100ft high lighthouse for organ donation charity, Live Life Then Give Life. Young transplant recipient and campaigner, Holly Shaw (22), organised and took part in the abseil to coincide with the launch of NHS Blood and Transplant’s new campaign.

‘Abseil for life’ took place on Saturday 7th November at Leasowe Lighthouse on the Wirral. So far her and her team have raised over £3500 with more money coming in all the time.

Holly has been the North West Advocate for Live Life Then Give Life (LLTGL), which supports people waiting for transplants and funds projects that increase the numbers of successful transplants in the UK, for the last year. Since then, Holly has been at the forefront of raising awareness in the North West.

Holly had her kidney transplant in October last year and felt privileged to be able to do the abseil. There is a chronic shortage of Organ Donors and many people waiting on the transplant list are not so lucky, with their time running out too soon.

She says: “I wanted to do a physical challenge to show what a difference this transplant has made to my life. I also wanted to raise money for Live Life Then Give Life as I am very grateful to them for all the help and support that they gave me whilst I was waiting for my transplant. I want to give hope to other people who are on the waiting list.”

None of this would be possible if it wasn’t for Holly’s Donor and the fact that their family said yes to Organ Donation. Holly says: “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 keen to continue raising as much awareness as I possibly can.”

Another participant taking part included a fellow LLTGL advocate Andrea Evans who says “I hope the abseil raised awareness about the importance of Organ Donation. Signing the Organ Donor Register is free, it takes two minutes, and it could save someone's life. Holly’s and my life was changed because of our kidney transplants and someone made that decision to donate their organs. I hope others will do the same."

LLTGL is a charity that supports individuals and families of people that are waiting for a transplant, post transplant and those families who have lost loved ones whilst waiting for a transplant. LLTGL also encourages people to sign up to the Organ Donor register.

Holly added: “while I want to thank everyone who took part – in organising it and of course those who have sponsored the team – there is still time for more people to make a difference by signing the register and sponsoring the abseil for life team.”

How you can help
• Go online to the teams Just Giving page and sponsor Holly and her helpers there. http://www.justgiving.com/LLTGL-abseil/
• Sign up to the Organ Donor Register online at www.organdonation.nhs.uk or by phoning 0300 123 23 23

To find out more about Holly and Live Life Then Give Life Log on to: www.lltgl.org.uk

________________________________________________________

What it doesn't say in the press release is that it was the most terrifying thing I have EVER done, I cried my eyes out and had to talk to myself the whole way down, reminding me why I was doing it etc. I'm really pleased with the total raised so far (over £3,500) there is still lots more to come in so I will keep you updated... and there is still plenty of time to sponsor me on the above link if you haven't done so already. Thanks to everyone that took part, helped organise it, helped on the day and those of you who have sponsored, its great to know I have a fantastic support network!

You can see pictures of the abseil here take by my lovely brother by CLICKING HERE!

But I will leave you with my favourite photo from the day...

Graduation...

2009-11-11T03:26:00.000-08:00

Well I'm all grown up now...

On 5th November I graduated from my Early Childhood Studies Degree BA (Hons) with a 2:1! It was a fantastic day, it took place in Chester Cathedral... what a venue! It was a very early start with having to get up at 5am (typical girl) having to sort hair and make up out and get my outfit on and sort out a change of clothes to take with me (which turned out to be very useful!).

I received lots of presents the day before, including a charm for my bracelet, a teddy, cake, graduation snow globe and photo frame! Andy, Fiona and Abigail bought me a lovely pair of white gold earrings and I immediately put them in.

We headed for a sports hall in Chester to pick up my cap and gown and get he official photos done and then made our way to Chester Cathedral for the service.

The ceremony was very special... and very official, it was great to sit where I was sitting and see the sea of mortorboards in front of me! I had met up with my friends in the cathedral and left my Mum, Dad and Andy to find their own way in as they had to use a different entrance, so I had no idea where they were sitting!

There were a few speeches and official bits and bobs, then a hymm (I can't remember the name) and then the best bit, everyones names were read out, we all queued up and our outfits were fixed before we were called and had to go up on stage shake the deans hand and walk across the stage (I had had nightmares about falling over, thankfully I didn't) I walked down the steps to be smiled at by all my tutors and then had to collect my certificate and sit back in my place, it only lasted a couple of minutes but it was a great feeling! The whole service lasted around an hour and a half.

We left the cathedral and it took about 10 minutes before we all found our families, we then proceeded to some steps to get some photos and throw our hats! Me and my friends have all joked that this is the only reason that we did a degree just so we could do the american thing and throw our hats in the air! It was so much fun and we got some great shots!

Fiona and Abigail made their way into Chester to meet us for lunch which we had at The Living Room, it was delcious, I wasn't too impressed that Andy picked Ostrich to eat! Ewwww, It was only the other day that we had been looking at them at Knowlesly Safari Park and there he was tucking into it for lunch!

Plans after that were a bit up in the air as everyone wanted to meet up for drinks, but we were all split up spending time with our families, My friend Sal was having her lunch at the same place as me so I decided on the spur of the moment that I would stay over night (totally unlike me) as Sally's sister (Leah) had a spare bed in her hotel room! So I sent Mum, Dad, Andy, Fiona and Abigail off home and I stayed with Sally and Leah to make plans for the evening! Bearing in mind I only had the clothes I was standing up in, a change of clothes for the night and luckliy my tablets it was a bit of mad decision!

It worked out in the end and we had a fantastic night, with many drinks, laughs and photos! I was a typical student and slept in my graduation shirt managed to nab a toothbrush from the hotel and went down to breakfast in the dress that I had worn the night before, complete with drink stains! (I am sure people thought that I had just strolled in at 9am lol)!

I would never have done that before, it was so spur of the moment but fantastic!

You can see some pictures from the day here and here but I will leave you with a few of my favourite photos from the day and night...

The back of my gown with the cathedral in the background

Andy's version of the official Photograph

One of my fav pictures from the day because I wasn't looking at the camera!

The throwing of the MotorBoards!

Outside the Cathedral you could pick a cross with a poppy on it in remembrance of someone, it was very fitting that it was there just as I had graduated and so I wrote a little message in remembrance of my donor.

Me, Abigail and Andy in the restaurant!

Me, Leah and Carrie... The celebrations begin!

Me looking even smaller than I am on the Massive 8ft chair!

Me on the Champers...

It was a fantastic day and without the gift from my donor I may not have been there to celebrate with my friends and family.... it is a day I will remember and treasure for the rest of my life.

New name... New look...

2009-11-10T12:43:00.000-08:00

Hello and welcome to my brand spanking new blog!

I feel the name is more fitting for me right now... and with a new name I have gone for a new look...

I hope you like it and will continue to read my random ramblings!

Watch this space for updates on my Graduation, The Live Life Then Give Life abseil and any other nonsense I decide to write about!

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...

2009-11-02T11:50:00.000-08:00

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....

2009-09-12T01:12:00.000-07:00

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...

2009-08-28T09:04:00.000-07:00

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...

2009-08-02T07:24:00.000-07:00

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....

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

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....

2009-07-03T05:44:00.000-07:00

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!