Thursday, 9 July 2009

LLTGL talks

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

Wednesday, 8 July 2009

Engage Magazine

I am on the front cover of engage!

http://www.ncvo-vol.org.uk/uploadedImages/Voluntary_Sector/Engage_JulAug09_cover.jpg


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.

Tuesday, 7 July 2009

Pictures from the DFN weekend...


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.

Monday, 6 July 2009

National Transplant Week...

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

Sunday, 5 July 2009

Emotional but enjoyable....

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.

Friday, 3 July 2009

The Gift of Life debut talk....

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!

Wednesday, 1 July 2009

Fundraising for LLTGL

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!