couple

Holly Shaw


  Holly is seen here holding the kettle next to Fay Ripley. The great team of volunteers for the campaign called Life Life Then Give Life work tirelessly to raise public awareness about transplants and donation. Holly is one of 22,000 people currently alive today because of a kidney transplant. Hundreds of more people wait for the same outcome.

  There are about 24,000 people currently on dialysis - many of these people would have their quality of life improved in the way Holly's life has been transformed.

  Look at the story provided by Simon Sykes - it tells of the grief that people can go through waiting for a transplant.

Holly has been kind enough to share her story.

I was a perfectly healthy teenager when suddenly, just after Christmas in 2004, I was taken ill and rushed into hospital. Various blood tests and injections took place and eventually a scan of my kidneys showed they had shrunk and were no longer doing the job they were supposed to. At this point I was told I had End Stage Renal Failure (ESRF) and needed to go on dialysis immediately, which I would remain on for the foreseeable future until a suitable donor kidney was found for a transplant. As you can imagine this came as a huge shock to both me and my family, I was only 17!

From then on, I required dialysis 3 times a week for 3 hours at a time and waited patiently for that phone call saying the transplant was going to take place. 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 including low energy levels, tiring easily and almost constant nausea. My mum went through the tests to see if she could become a donor for me but she wasn't suitable.

The actual haemodialysis itself takes its toll, it involves two needles inserted into a fistula which is a surgically enlarged vein located in my upper arm. This provides access to the bloodstream for haemodialysis. The fistula buzzes all the time which means the blood is flowing through it freely. Haemodialysis left me feeling wiped out and very often light headed however it was the only thing that could keep me alive until I got a transplant.

Dialysis is exhausting and disrupts your life

I tried to not let dialysis get in the way of everyday life, I attended university when my health allowed me to although this was sometimes a struggle fitting the work load in with my hospital visits however the lecturers have been sympathetic regarding my attendance. Whilst I wouldn’t describe my social life as that of a normal student, I had and still have some great understanding friends who are very supportive.

I am now 21 and I am pleased to say my story has a happy ending, as in October 2008 I received the call I had been waiting over 3 years for, a suitable kidney had been found and the transplant took place that evening.

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

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

I am raising awareness about organ donation; The Gift of Life campaign aims to promote the benefits of signing up to the Organ Donor Register, and create discussion and debate around the issue. For the last 6 months I have been 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. My Gift of Life programme is to be aired in May.

I recently organised a National Donor Day on 7th April 2009, with the help of volunteers and my mentors (which were provided through Battlefront).

The BATTLEGROUND campaign

My campaign aims to make it easier to sign up and to spread the word. 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. The main focus was that it only takes two minutes to sign up, the same amount of time to make a cup of tea! So the slogan was "Be a Hero: Put the Kettle on", we tried to encourage people to become "2 minute heroes" for the day! 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 (which I manned) was situated in Canary Wharf. I appeared live on GMTV and Sky News to promote Donor Day and also 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.

The registration forms are now being collated, website hits and text sign ups counted – but all early indications point to a spike of activity, with people joining the Register in their thousands. On the afternoon of Donor Day, the campaign had become the second most re-tweeted tweet on Twitter. By 5pm, there had been over 3,200 online registrations more than 15 times the average daily registration rate and 995 of these were directly through my very own website. 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 Melissa Bell (Alexandra Burke's mum, winner of "X Factor" who is waiting for a kidney transplant).

Prime Minister Gordon Brown expresses his support

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.” He has also suggested meeting me to discuss my campaign further.

I am proud to be the North West advocate for the Organ Donation charity Live Life Then Give Life who support people waiting for transplants and to fund projects that increase the numbers of successful transplants in the UK. 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.

Signing the Organ Donor Register is free, it takes two minutes, and it could save someone's life. My life was changed because someone made that decision. I hope others will do the same and give hope to over 7,000 people who are currently waiting for a transplant, 1,000 of whom will die this year because of the shortage of Organ Donors in the UK.

I will be eternally grateful to the donor and their family for giving me this chance at a new life.

  • My website: http://www.thegiftoflife.org.uk/
  • My Blog: http://lifeondialysis--waitingforthecall.blogspot.com
  • My Battlefront Page: http://battlefront.co.uk/campaign/the-gift-of-life/.
  • Live Life Then Give Life: http://www.lltgl.org.uk/



 

Page links

 

Challenging Transplant Issues

Introduction

Solid Organ Donation

What solid organs can be donated?

Human Tissue Donation

What human tissue can be donated?

How to become a Donor


a. Blood donation
b. Bone Marrow donation
c. Cord blood donation
d. Tissue and Organ donation
e. Sperm and Embryo donation
f. Whole body donation
g. Brain donation

Donor Experiences


1. Denise Darvall - first heart donor
2. Leroy Hobden -kidney
3. Matthew Ferguson - multiple organs
4. Living kidney donor Maggie
5.The Herrick twins - kidney
6.Charlotte Pestell - eggs
7.Mark Jackson - sperm
8.Barbara Ryder- kidney
9.Charlotte Newall - blood donor
10.Laura Ashworth - multiple organs
11.Daniel Harrison - tissue donor
12.Adam Rogers - multiple organ donor

Heart recipient stories


1. Louis Washkansky - first heart recipient
2. Graham Brushett - heart & kidney
3.Dave Garry - heart
4.Chet Szuber – received his daughter’s heart
5.Bill Noble - heart

Lung recipient stories


1. Justine Laymond - double lung
2. Elaine Betts - double lung
3.Gill Hollis - single lung
4.Sean Bell - double lung

Kidney recipient stories


1. The Herrick twins - kidney
2. Holly Shaw - kidney
3.Jonah Lomu - kidney
4.Ivan Klasnic - kidney
5.Andy Loudon - kidney
6.Rachel Leake – kidney recipient
7.Soul singer Natalie Cole – received a kidney from a deceased fan

Liver recipient stories


1. Ivo Dawnay - liver
2.Brian Clough - liver
3.Clare Bond - liver
4.Vikki Medlicott - liver
5.Apple Boss - Steve Jobs - liver

Other recipient stories


1. Alex Patrick - eggs
2.Beth Morris - blood and bone marrow
3.Susanne Butscher - ovary
4.Claudio Castille - trachea
5.The Newall family

Waiting and hoping


1. Simon Sykes
2. Rachael Wakefield

And time ran out


1. Helen Miller
2. Adrian Sudbury
3. Lewis Prior

The Organ Donation Taskforce - ODT


1. The Organ Donation Taskforce - ODT
2. Recommendations of the ODT

Presumed Consent debate


1. Why change opt-in?
2. Why is legal and medical consent so important?
3. Opt-out or Opt-in?
4. Alternative consent systems
a. Routine Salvaging
b. Priority consent
c. Preferred consent
d. Conditional consent
e. A Social Contract
f. Mandated Consent

site Map
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