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

2 comments:

jen said...

Great blog Holz! Well done for giving the talk, we're all so greatful to you and Carol for sharing your stories and making a huge impact!

Kiz said...

That sounded like a fantastic talk, Would have liked to have been there to see the reactions of the pupils :-)

the stall was an added bonus too, shame its not this way, would have been happy to help there!

Well done on doing the talks, and enjoy ur hol !!