Second LIFEMAGAZINE

Issue Three Price: UK-£2:75

IRL: €3:20

WELCOME CONTENTS

Welcome to the last issue of Sec-ond LIfe Magazine! It’s been a long an enjoyable few months designing and publishing three issue’s of this Magazine. I have learnt a lot from this experienece

not only on deadlines but about transplants and organ donations too!

In this last issue we will be looking at the Transplant Games,which will be hosted in Belfast this August. We are raising awareness for Liver transplants this month with nurse Lisa-Marie McKenna. Along with help and advice with Cat,Mollu and Lisa-Marie answering your questions and queries.

As always you can contact us, send in your photos, views and stories in the following ways!

You can contact us via Twitter: @MaeveMcKenna or Via our very own Blog that I keep updated with news stories and the progress of the magazine, check it out at: www.wordpress.com/secondlifemagazine.

Also thank you to our contributers, Nurse Lisa-Marie McKenna, Transplant Kids founder Cationa Hamilton and Google images for all the photos used!

Hope you enjoy the last issue, as much as I enjoyed writing and designing it.

Maeve

Page Four & Five- Our Regular News hub Feature, make sure you catch up on all the latest.

Page Six & Seven- The Transplant Overview: The Liver Page,Eight & Nine -Transplant Games, is Belfast Bound Page Eleven- Do Not Dis-pose, we look at how your unwanted items can be used to help other. Page Twelve & Thirteen- Q&A with the team Page Fourteen This months Transpmant Kids. Page Fifteen- Your pictures

THE NEWS HUBSecond Life Magazine Page Four 3rd May 2011 Issue Three

Are you passionate about organ donation and transplantation? Do you have a burning question to ask of MPs or the Director of Organ Donation and Transplantation for the UK ?

Yes? Then CLDF would love to hear from you. We are looking for five CLDF representatives to attend Transplant 2013’s Organ Donation Question Time on Tuesday 10 May at the House of Commons, London . The event will run from 10-11:30am. Based on the BBC’s ‘Question time’ programme, you can put your questions to Chris Williamson MP prior to the event and then address the panel. So you will need to be confident speaking in public and in front of MPs, Peers, clinicians, industry representatives and patients – all of whom may be in attendance. The panel will consist of many of the top Health and NHS excutives and many MP’s, inclusding: Anne Milton MP, Parliamentary Under-Secretary of State for Public Health, Department of Health.

Transplant Reps want-ed for BBC Question Time

Sally Johnson Director, Organ Donation and Transplantation, NHS Blood and TransplantKeith Rigg - Past-President, British Transplantation SocietyDr Bob Winter, President, Intensive Care SocietyTim Statham, Chief Executive, National Kidney FederationEmily Thackray, Chair, Live Life Then Give Life This is a fantastic opportunity to: • Represent the families and children affected by child-

hood liver disease• Keep organ donation and transplantation on the politi-

cal agenda• Visit the city’s capital and the historic House of Com-

mons• Share and learn with others affected by organ donation

and transplantation If you are interested in participating Contact: Emma Dempsey on 0121 212 3839 or email pa@childliverdisease.org

Second Life Magazine Page Five 3rd May 2011 Issue Three

Runners in Monday's (1st Of May) Belfast Marathon are being asked to sign up as organ donors when they pick up their information packs for the event.

The Public Health Agency has said it has launched the initiative because only one in four adults in North-ern Ireland are on the donor register.

It said in Northern Ireland more than 300 people are currently waiting for an organ.

The Marathon Expo, which will have members of the NHS organ donation team from Belfast City Hos-pitail, will be running in Belfast City Hall until the 3rd of May, giving Marathon runners and other members of the community the chance to sign up.

Earlier this month, the PHA announced it had teamed up with public sector union Unison to promote a workplace initiative to encourage organ donation.

Belfast runners urged to sign Organ Donation register...

A breakthrough in the development of artificial kidneys by Edinburgh University scientists could significantly reduce the demand for donor organs, a trans-plant expert has said.

Researchers used stem cells to create tiny kid-neys, equivalent in size to those of an unborn infant, which they hope will be able to grow to maturity when trans-planted into an adult's body.

The kidneys were created in a laboratory using a combina-tion of cells from amniotic fluid, which surrounds babies in the womb, and animal foetal cells.

It raises the prospect of medics being able to create artifical kidneys and other organs for transplant patients in future, if the patient's amniotic fluid has been collected while they were in the womb.

Details of the groundbreaking research are due to be outlined at the Edinburgh International Science Festival in April.

Professor James Neuberger, associate medical director of Organ Donation and Transplantation with NHS Blood and Transplant, said the development was important because the donor pool is shrinking while demand increases as the popula-tion gets older.

Writing in Scotland on Sunday, he said that while there would still be a need for donor organs, artificial kidneys would reduce demand as well as being safer and healthier. Scientists believe it will take another ten years for the technology to ad-vance to the stage where they are able to transplant laboratory-grown kidneys into live humans.

Artificial kidney breakthrough 'could cut donor waiting list'

Second Life Magazine Page six 3rd May Issue Three

Transplant Overview:The LiverTranplantWith Nurse Lisa-Marie McKenna. Lisa-Marie has worked as Theatre Nurse In the Bel-fast City hospital for six years. She now works in Theatres in Australia in a private hospital and is part of a very successful transplant team. The advice she gives in her colum areNHS recommendations. However if you are worried please contact your GP.

Why you might need a new liver.

A liver transplant becomes necessary when the liver is damaged to such an extent that it cannot perform the functions required for a healthy life. This is known as liver failure.Once liver fail-ure has occurred, it is usually possible to sustain life for several years using treatment such as medication. However, a liver transplant is currently the only option for curing liver failure.Unlike the kidney, heart or lungs, there is no mechanical de-vice, such as a dialysis machine, that can replicate the function of the liver. However, the creation of an artificial liver device is now one of the top priorities of the medical research com-munity.There are four main ways that a liver can fail:Acute liver failure, Chronic liver failure, Metabolic liver dis-ease, Liver cancer.

Who can use a liver transplant

Due to the small number of available livers, each liver trans-plant case is carefully assessed. The assessment procedure is based on two factors:• your risk of dying if you do not receive a liver trans-plant, and • the likelihood of the transplant being successful and you surviving after the procedure. There are a number of scoring systems that healthcare profes-sionals use to assess the clinical need and urgency for a liver transplant. One of these is known as the model for end-stage liver disease (MELD).MELD uses a numerical score, ranging from six (less ill) to 40 (gravely ill). The MELD score is calculated by using a formula that looks at the results of three blood tests, which measure:• how effectively the liver produces bile, • how effectively the liver produces blood clotting agents, and • how effectively the kidneys are functioning. Impaired kidney function is often associated with severe liver disease. The MELD score is used to estimate your chances of dying within the next three months. Estimating survival ratesMost transplant centres will not perform a liver transplant if they believe you have a less than 50% chance of surviving for five years or more after the transplant.The assessment of your likely survival rate is based on your individual circumstances and ill-ness.A number of tests will also be carried out to assess your healthand your likelihood of survival. Reasons why a liver transplant may not be available There are a number of factors that usually indicate that you would be unlikely to survive following a liver transplant, and would therefore not be a suitable candidate for the procedure.

Second Life Magazine Page Seven 3rd May Issue ThreeThese are five of the factors:

Continued alcohol misuse• .Continued drug misuse• .Advanced liver cancer•

End-stage HIV• .Advanced age•

How is it performed?

You will be contacted by staff at the liver transplant centre as soon as a donated liver of the right size that matches your blood group becomes avail-able.This could be at any time during the day or night, so you may be given a bleeper to alert you. If necessary, you may be given transport to the trans-plant centre.It is important that you don't eat or drink anything from the time the transplant centre contacts you. Once you arrive at the transplant centre, you will be given a chest X-ray and an electrocardiogram (ECG), so that your heart and lung function can be re-assessed. You will then be given a general anaesthetic in preparation for the transplant. The most common type of liver transplant is an orthotopic transplant, where a whole liver is taken from a recently de-

ceased donor.The surgeon will make an incision (cut) in your abdomen and remove your liver. The donor liver will then be put in position and connected to your blood vessels and bile ducts (small tubes that move bile out of the liver).

After the donor liver is in place, the incision will be sealed using dissolvable stitches. Drainage tubes will be attached to drain away extra fluids, and they will usually remain attached

for several days after surgery.

Recovery Time After a liver transplant, one of the biggest risks is that your im-

mune system will regard the new liver as a foreign object and begin to attack it. This is known as rejection.To prevent rejection, you will be required to take medicines that suppress your immune system. These medicines are called immunosuppressants.You will probably have to take immunosuppressants for the rest of your life. you should never stop or reduce the recommended dose of immunosuppressants because it could lead to your liver being rejected.

Staff at the transplant centre may give you additional treat-ments to help you cope better with any side effects.Some people have turned to alternative and complementary therapies, such as herbal medicine, and relaxation therapies. such as meditation to help them to cope better with the side ef-fects of immunosuppressants.

Second Life Magazine Page Eight 3rd May Issue Three

Transplant Games Belfast bound for 2011The Transplant Games 2011 will be descend-

ing on Belfast in August, more than 1,800 participants and their supporters will take over the capital city, for the Westfield Health

British Transplant Games. The Games, now into their 34th year, are the biggest

event in Transplant Sport UK’s calendar and the main aim is to highlight the desperate need for organ dona-tion and to encourage transplant recipients to lead an active and healthy lifestyle.

"3 people die each day waiting for an organ transplant in the UK and only 26% of the population in NI has signed onto the NHS Organ Donor Register."

TSUK aims to showcase the benefits of transplan-tation and raises the awareness of the desperate need for or-gan donation across the UK.

All the money TSUK raise through the Belfast City Marathon will help to support our major event the British Transplant Games being held in Belfast in August 2011 and achieve our aims.

More than 800 people who have had a transplant between the ages of two and 82 will take part in 18 sporting activities at locations in and around Belfast, including archery, athletics, golf, squash, volleyball, snooker, tennis and swimming.

While competition will be fierce, the athletes have already won the race for life — winning a medal will be a bonus.

Through organizing sports and social events for trans-plant recipients the games can show the benefits of organ donation and prove that you can lead a normal

and active life again after transplantation. The British Trans-plant Games are organised on behalf of the Transplant Sport UK (TSUK). The Games were inaugurated in 1978 in Port-smouth by Maurice Slapak, who at the time was a Consultant Transplant Surgeon. Approximately 100 participants took part in the first Games in a one day event. Over the past 30 years, the British Transplant Games has grown to a four day annual event for over 600 competitors and nearly 1000 supporters.

The Games have been staged annually since 1978 in a number of host cities including Portsmouth, Newcastle, Car-

diff, Birmingham, Exeter, Liverpool, Belfast, Edin-burgh, Glasgow, Leeds, Leicester, London, Manches-ter, Sheffield and Norwich, Lough-borough, Bath and Coventry .

From the first Transplant Games held in Port-smouth in 1978 has evolved an annual event, The British Transplant Games, incor-porating a wide

variety of sporting and leisure activities for all age groups. The Games take place over 4 days in the summer in a different venue each time and from these Games is selected the Team to represent Great Britain in the World Transplant Games.

The aim of The Games is to encourage transplant patients to regain fitness and to promote friendship and co-operation between individuals concerned with transplantation, whilst increasing public awareness of the value of organ donation.

Some of our Members come to win medals, training well in advance of the Event and with an eye to being chosen for the World Games - others come to renew old friendships, do their sport at their own pace and generally enjoy a few days of fun and sharing amongst so many who had debilitating illnesses but

Second Life Magazine Page Nine 3rd May Issue Three

who are now fit and well as a result of a successful transplant.

The Games are expected to have an economic impact value of about £2.5m in terms of tourism. Around 6,500 bednights will be booked throughout the dura-

tion of the event, with many visiting participants and their families keen to extend their trip to take in more of what Bel-fast and the rest of Northern Ireland has to offer visitors.

Transplant Sport UK has been working closely with the Belfast Visitor & Convention Bureau to ensure visitors get the most out of their stay.

Press coverage of the Games will ensure Belfast comes to the attention of the rest of the UK with £1.2m worth of free adver-tising for the city.

Transplant Sport UK is also sourcing the products and serv-ices required to run the Westfield Health British Transplant Games from local suppliers, ensuring local businesses receive a boost and benefit from the event.

As hosts for the Games, the people of Belfast are being given the opportunity to do what they do best — welcome visitors to their city.

Transplant Sport UK is asking people across Northern Ireland to show their support by becoming one of the 100 volunteers required for the event, running the Belfast City Marathon or signing the Organ Donor Register.

To become a volunteer, |contact Emma Dean on emma.dean@transplantsport.org.uk.

History of games in pictures

1978 Games

1980 games

Coventery 2009

Second Life Magazine Page Eleven 3rd May 2011 Issue Three

Do Not Dispose..Still needed...We are all guilty of throwing away un-wanted

items without a second thought to how they could be of use to other people, especially

those who are less fortunate than ourselves. Many charities are now comitted to bringing people un-

wanted or un-used medication, dressings, clothes, medi-cal equipment and even recreational toys and games.

I know many of our readers are transplantee’s or know someone who has had a transplant and that is why I am appealing to you, to please consider donating all your un-wanted dressings, medications and any other medical resource you have that you think someone else may fin helpful. The list of charities involved in doing this is endless, but here are just a few, including information on how you can get involved with their causes.

Inter Care- Medical Aid For Afrirca

£800 million worth of medicines dispensed to UK patients are unused and going to waste, according to gov-ernment figures. Your unwanted medicines can help save lives in Africa.

Inter Care – Medical Aid for Africa is a UK registered char-ity (no. 275637) which col-lects selected returned patient medicines from GP practices and, after appropriate quality controls, recycles them free of charge to a network of over one hundred health centres in six desperately poor countries of sub-Saharan Africa.

On the website (http://www.intercare.org.uk/about) you can find out more about our work and the health centers we support, download information about the medicines that we can and cannot re-cycle, register a GP practice to start collecting patient

returns, and most importantly donate money to help us continue this vital work - saving waste in the UK while saving lives in Africa.

Hope Aid and Direct

Hope and Aid Direct work closely with other charities and NGO's who often advise on where the aid is most desper-ately needed and they may also offer assistance during the distribution by providing interpreters and guides. Howev-

er, it is Hope and Aid Direct who make the final decisions as to what is taken and what they hand out.

Quite often contacts are made during one convoy that may mean they take specially required

items. Medical equipment, educational items, bicycles, wheelchairs, computers and sewing machines are some of the specially requested items that have been taken on recent convoys.

All these special wish list items have to be obtained and the charities volunteers work hard for the six months before each trip to make sure as many of the requested items as possible are donated or funded.

From all the above you will understand there are many opportunities for you to become in-volved and for as much or as little of your time as you care to give. http://www.hopeandaiddirect.net/howtohelp/ We Hope our readers at Second Life Magazine will help these charities as much as they can in their causes. And please remeber not to let your medical resources go to waste, even if you bring

your un-wanted items back to your GP, or simply refuse them when you don’t need them, so others can recieve the benefit.

Second Life Magazine Page Tweleve 3rd May 2011 Issue Three

Q&A with the Second Life

TeamDear Cat,

I’ve been in contact via email to my Donors sister since 2006 when I recieved my liver transplant. Her and her family have just moved

and now live 15miles away from me and I was just won-dering if you have any advice for me, because they seem very keen to meet me noe they live so close. Their daughter gave me such an amazing gift and I would love to show my thanks and grattitude in person.

Christina

Wow Molly how exciting wonderful and

probably a little daunt-ing. I am sure it'll be an emotional meeting if you decide to go through with it. My son Aaron's donor

Mum would love to meet

Aaron we are in contact but it's entirely up to Aaron when and if he's ready in the future. You will of course have to consult your parents on this one and see how they feel, but it is ultimately your choice, and if the donor family and you are both happy to meet then it could be a great expe-rience for both of you. Just remember to bring a family member with you and meet somewhere where you are both comfortable. They might want to see photos of you and your journey back to health, just ask before hand as they might feel overwhelmed about it. Dont forget they lost a Daughter I look forward to hearing how it goes.

Cat x

Dear Molly,I’m soon to move into adult care when I turn 16, only 5 months away, and I am very nervous and

dont really know who to ask about it all. I was just wonder-ing if there is any advice you would be able to give me? I had a hear transplant in 2007.

Marianna

I Have recently finished my transistion into adult care, and while it was

daunting at first I love the independance. But it is impor-tant to ask lots of questions, you need to talk to your team and your transplant consult-ant ans they will mainly be controling the transition. It’s also important to involve your parents as it can be

tough on them as they wont be able to visit or stay as much as they use to.

I'm happy attending adult outpatient clinics now and have been since the start of transition. It's nice being treated as an adult.

However, I did have concerns about the transi-tion, such as inpatient stays. I never stayed on an adult ward, so was quite nervous about the first time And I've never stayed in hospital alone, one of my parents has always stayed with me, but I feel much happier now that I have experienced it all.

Good luck and let me know how you get on.

Molly

Second Life Magazine PageThirteen 3rd May 2011 Issue Three

Dear Lisa-Marie,My son Thomas needs a liver transplant but has a very weak immune system and we are worried that

he will catch cytomegalovirus (CMV) after the transplant. We heard recently that they are bringing out a vaccine that can target CMV, when can we expect it to be used within the NHS?

Cath & Bryan

You have heard right,The univer-sity of Central

London are working on a vaccine, that could be given to transplantee’s in order to combat CMV. CMV is sometimes referred to as the ‘Toll of Transplantation’ because of the high level of serious disease it can cause in this patient group - including pneumonia, lung complica-

tions and liver infection. At the moment the drug is still experimental and hasnt been picked up by and pharmcetical compa-nies, but the testing that is going on is proving very successful. If you are interested in the vaccine UCL are cur-rently running trails, so it might be worth mention-ing your interest to your family GP, comsidering Thomas’ health concerns

it might be beneficial, but please remember that it is still in testing and can also be risky so please consult your GP. I hope Thomas is well and is gifted with a liver soon.

Lisa-Marie

I recently read that many people are being put off donat-ing organs, because of an ‘ICK’ factor and disgust at the idea of having another person’s body parts installed. I

for one am hurt and ashamed by these readings as when my son died at the age of 7 i didnt think twice about donating his organs as I knew that it would save many other lives. Please can you dispell some of these beliefs.

A Concerned donor mother.

There are many con-cerns that people have surrounding

organ donation and the truth of the matter is that we cannot force people to join the register. What people must realise that there are 10,000 people in the UK waiting for a transplant and on average 3 people a day are dieing on the waiting list. So if they joined the register there is no ICK factor, but you would be saving a life, after yours in over. I have recently heard that many people also fear that doctors wont trive to save their live if they know the are on the reg-ister. This is not true medical proffesionals like myself are bound by a code of conduct and our own morales to save every life. I can understand your fustration at reading this news.

I would urge you to maybe volunteer for the register and use your experience to get more people to sign up to be a donor.

Lisa-Marie

Second Life Magazine Page Fourteen 3rd May 2011 Issue Three

Thirteen years ago Catriona Hamilton became the mother for the first time and received the heart breaking news that her son Aaron had a congenital heart disease and would die if he did not receive surgery. Aaron received his op-eration but unfortunately complications occurred and he developed a gastro-in-

testinal condition, which destroyed most of his small intestine. Catriona recalls the first few years of Aarons live and how she and her family are trying to make a difference to other families and transplant children’s lives with ‘Transplant Kids’.

“It was heart breaking when we first found out; he was so small and perfect that it just didn’t seem real.” Catriona and her partner William where not allowed to bring Aaron home till he was 13months; “he spent the whole first year of his live in hospital receiving treatment for his intestine and they were still monitoring his heart.... We just wanted him to have as normal a childhood as pos-sible, which was hard with the tubes and care that he needed, but we knew that bringing him home was for the best.

Because he had could no longer absorb food through his small intestine, he was being tube fed, which also caused complications with his liver, which left him needing a small bowel and liver transplant, “he was only eight months old and his heart was not yet strong enough to cope with another surgery, it was stressful because we had already come through so much and now we felt like we were back at square one and facing the un-known once again.”

In May 2000 the family got the call they were waiting for, “we were sat down to dinner and we got the call that the organs were available, because we live in Scotland Aaron was air lifted to Birmingham for the operation, it was a mixture of emotions

Catriona and Aarons Story

as we were very aware that someone else’s child had to die, in order to save ours.”

But now 10 years on Aaron is fitting fit and Catriona has been working very hard with William in their home town of Peebles in Scotland, to raise awareness of the need for organ donors. “Around 5 years ago we were sitting chatting one night about some of the emails we'd received from people who had looked at the website I'd created to tell our son's life story "Aaron's Gift of Life" (no longer online) and that it had given some families hope regarding their own child's future.

It was Aaron's Dad, William, who suggested creating a web-site with a forum for children and their families about organ transplants, the name "Transplant Kids" quickly followed and we ranted with excitement. We knew there wasn't anything quite like it, the information on the internet tended to be all adult orientated & organ specific, nothing was geared up for children and their families.

It took a fair wee bit of research and finding suitable graphics as well as getting the content proof read by some play special-ists and transplant consultants and after a few months Trans-plant Kids was created.

Transplant Kids went live the 1st year Aaron attended the British Transplant Games in Norwich in August 2004. It was pretty quiet for sometime but soon the word got out and links were made to the site from all over the UK and around the world some like the USA and Australia. “

Now transplant kids hosts a wealth of infor-mation from both trans-plant patients and their families, while it is not a charity and they don’t not raise money for the site, occasionally they receive donations from other charities in order to keep up the good work that they do, in providing

insightful and much needed information on organ donations and how to cope with the enormity of the situation, the website also boasts a forum which has many active users who have mostly all been donor families or patients.

You can visit the site and see all the good work Cat and Will do by clicking the following link: http://www.transplantkids.co.uk/index.html

Second Life Magazine Page Fifteen 3rd May 2011 Issue Three

Your Belfast Marathon 2011

Pictures