Tor's Plea

“Every day is a struggle and it gets harder just to survive each day. Statistically I shouldn’t even be alive now. Everyday I face the possibility my chance at life may never come and am constantly scared about my uncertain future. At 24 I shouldn’t have to worry about living to 25.”

Our ambassador Tor has now been waiting for a lung transplant for exactly 4 years today. She was only given 2 years left to live when listed, so she is well and truly on borrowed time.

You may remember we launched Tors Christmas wish in December 2010.

7 months on and nothing has changed, Tor is still waiting, still holding on, still fighting to live, hoping for that phone call that will change her life. Tor lives with the knowledge that half the people waiting for a lung transplant will die.

During this week, National Transplant Week, we have joined together with NHSBT to spread Tor's plea in the hope that more people sign the organ donor register and give Tor a chance.

Please pass this link on to as many people as possible http://www.lltgl.org.uk/torsplea

Tor says “Without a transplant there is no hope for me. Please watch my plea and pass it on to spread the message far and wide. You can do something today and save lives of people waiting each day for their lives to start.”

Inspired? Click here to sign the organ donor register today!

Thank you.

To keep up to date with Tors story visit her blog here: http://tor-pastthepointofnoreturn.blogspot.com/

Guest blog by Oli Lewington

Today on the LLTGL blog we're delighted to have Oli Lewington's guest post on the current 4Thought.tv series on compulsory organ donation. Thanks to Oli for his views, we'd love to hear what you think.

The 4Thought Question: Should Organ Donation Be Compulsory?

This week, Channel 4’s 4Thought.tv strand has be focusing on the question of whether or not organ donation should be compulsory.

We’ve heard from Professor John Harris, who believes not only should it, but also that live donors should be “incentivised” to provide their organs (for example, with cash payments); from Derek House, a Jehovah’s Witness who believes that organ donation is fundamentally wrong and shouldn’t be allowed at all; and Colin Prior, who advocates presumed consent (the system that would make people opt-out rather than opt-in to being an organ donor) after losing his 2-year-old son while he waited for a heart transplant.

Tonight, you will hear my views - or as much as can be edited into 90 seconds. For the record, here are the salient points I tried to put across (we’ll have to see how much of it came across in the end!).

GIFT OF LIFE

Firstly – and most forcefully from my perspective and that of many of the lucky recipients of transplant – is the emotional power of the knowledge that you’ve been given the gift of live, with the emphasis on ‘gift’.

I don’t know how it would feel my life wasn’t saved by a conscious choice, but rather the simple fact that my donor never opted out of the system.

FAMILY REFUSAL

Presumed consent removes the need for anyone who supports organ donation to talk to their families about their wishes. When faced with a coordinator asking you whether or not your loved ones organs can be used, how can you be sure of their wishes if you never spoke to them about it? What if you say yes, but they didn’t want that and just never got around to taking themselves of the register, to opting out?

No family in the world in that kind of pressure situation highlighted and exacerbated by grief, pain and loss will agree to donation if there is still doubt. Better to raise awareness as we are and encourage sign-up to the ODR than to risk losing organs because no one talks about it any more.

COLD, HARD FACTS

The Organ Donor Taskforce Report from November 2008 makes two key, fascinating and sobering, points:

Firstly, a switch of system would require an investment of £40million in a campaign to make sure everyone in the country new what was happening. And it does have to be everyone. No falling-through-the-cracks like the digital switchover or similar mass-market campaigns. We all have to know what will happen to our organs if we don’t opt-out.

Secondly, infrastructure: the NHS as it stands simply could not cope with the significant rise in the number of potential donors that a switch to presumed consent would bring. Sad, but true.

So surely the £40million would be better spent on awareness of the Organ Donor Register (ODR) and incremental improvement of the intensive care services, number of donor and transplant coordinators and numbers of surgical teams?

THE FINAL WORD FROM SPAIN

The Spanish organ donation and transplant system is held up - quite rightly - to be the best in the world. The numbers don’t lie.

But too many people draw incorrect conclusions from the fact that Spain has an opt-out system. Mathematicians will tell you there is a vast difference between correlation and causation.

Dr Raphael Matesanz, the pioneer held up as being chiefly responsible for the success of the Spanish system says himself:

"Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate".

That 3 people die every day waiting for an organ is unacceptable.

That I’ve been to the funerals of 5 friends under the age of 24 due to lack of organs is indescribably, unimaginably tragic.

That I was lucky enough to receive a transplant meaning that someone else waiting didn’t get theirs is hard to live with.

But there is more to this argument than simply increasing the size of the potential donor pool. We must see the bigger picture and continue to support the work of organisations like Live Life Then Give Life to sign as many people as possible to the organ donor register.

Oli Lewington is a friend and former founding Trustee of LLTGL. He is a writer, blogger, digital creative and social media specialist, working from his home base in a village near Northampton. In 2007 he received a life-saving double-lung transplant and never a day goes by that he doesn’t think about and thank his donor and their family for their courageous decision at the worst of times. Follow him on Twitter here.

Kirstie's big day.

21 year old Kirstie Mills is one of our incredible LLTGL Ambassadors.

She is in desperate need of a double lung transplant and declining rapidly. Doctors told her last month that she has approximately six months left to live without one.


Yesterday, talk of drugs, hospitals and mortality was put aside as Kirstie walked down the Aisle to marry her fiancé Stu. Despite being extremely ill and leaving her hospital bed in the High Dependancy Unit for the day, Kirstie looked radiant and it sounds like the day was very magical indeed.

We need your help, because without a transplant, Kirstie and Stu will not get to celebrate their first wedding anniversary. There are 10,000 people like Kirstie currently in desperate need of a transplant, and three of those die every single day due to the shortage of donors.

What can you do to help?

Please share the video of Kirstie's wedding day with anyone and everyone; it is truly moving.

When you do so, please encourage people to sign the organ donor register. It takes just 2 minutes, anyone of any age can sign up, and you could save up to 7 people like Kirstie once you're gone.

It's so quick and easy to sign the organ donor register, yet only 28% of the population have taken the time to do so. All the major UK religions support organ donation, and most illnesses do not prevent you from becoming a donor. There is more information on our FAQs page.

Please go to www.tinyurl.com/kirstieslungs to sign up, and tell your family about your decision to do so. Then share the link with everyone you know. The majority of us just haven't got round to signing up; let's do something about that.

Kirstie knows that she doesn't have long left without a transplant, but we can help give her hope, give her a future.



Please help Kirstie spread the word, by sharing her story. Together we can ensure even more people are given a future thanks to the gift of life.

Thank you x

LAM Awareness Day.

Today is Worldwide LAM awareness day.



LAM stands for Lymphangioleiomyomatosis, and is an extremely rare disease which only affects women, and usually shows itself in women of child-bearing age.

LAM primarily attacks the lungs, destroying lung tissue and leaving sufferers increasingly more breathless. The disease causes excessive growth of smooth muscle, which progressively invades the airways, and destroys healthy tissue, preventing the lungs from providing oxygen, eroding lung function, and making breathing a daily battle.

A common symptom of LAM is pneumathoraces, or collapsed lungs, and it is often when the patient reaches this stage that the disease is diagnosed. LAM is not an inherited disease and the cause is currently unknown. There is currently no cure for LAM and very little treatment, besides a lung transplant, for severe cases.

This is an extract from a piece written by LAM patient Gill Hollis, in 2010:

My lung problems began in 1987, when I was in my early twenties. I’d always been fit and healthy, so it was a shock when I suffered three lung collapses in six weeks. Five years later, after some more lung problems, I was told I had the chronic disease LAM. Oestrogen is thought to play a part in LAM, so I was advised not to have children. I was told that my prognosis was uncertain, but that there was no treatment and no cure. It was a devastating diagnosis.

The disease progressed through slow attrition; I grew increasingly breathless, and required more surgery after further lung collapses. It was in 1995, before another operation, that the possibility of a transplant was first raised with me. This was fantastic news; finally, I was given some hope that my future might hold something other than the ultimately terminal march of the disease.

In the meantime, I was being forced to give up my favourite activities one by one. By summer 2003, I was on oxygen 24 hours a day; eating and sleeping were difficult; and showering and dressing in the morning took hours. I’m naturally an energetic and sociable person, but was unable to be either.

I was finally put on the transplant list in July 2003. By then, my physical symptoms were at least matched by the psychological impact of my situation; I was deteriorating rapidly, and was terrified that my call would not come in time.

I was lucky. In February 2004, I received a new left lung. In general, the operation went well and thanks to my donor, her family, the team at the Freeman Hospital and the support of my family and friends, my life since then has been absolutely transformed. Leaving hospital was extremely emotional – I felt like a new woman.

Of course, there have been setbacks, but the benefits have far outweighed these problems. My quality of life is excellent. It is wonderful to live a normal life again: going out for supper with friends, working, walking to the cinema, going on holiday, playing with my young nephews. I even appreciate being able to do my own supermarket shopping!

I am able to indulge my love of sport again too; since my transplant I’ve been kayaking, skiing and golfing, and have even learnt to rollerblade. Earlier this year, my husband and I travelled to New Zealand, where we completed the arduous one-day trek, the Tongariro Crossing. In summary, I am a participant again, rather than a frustrated spectator.

Soon I will celebrate the seventh anniversary of my transplant. I wrote to my donor family soon after my transplant; it was the most difficult letter I’ve ever had to write, but also the most important. I can’t thank them enough, but hope that my letter – and those from other people who benefited from their brave decision – helped them in their loss.

To find out more about LAM visit http://www.lamaction.org/

x

Call to Action

**Thank you to those who participated - this stage of the research is now finished so they no longer require new participants.**

We have had a request for volunteers from an ESRC funded PhD researcher from Durham University. Read on for more details.

Understanding family organ donation consent

This project is examining organ donation and, in particular, the experiences of families giving consent. It is an important area of research because 42% of families decline to give consent, despite 90% of the population feeling positive about organ donation, and we need to understand the reasons behind this discrepancy better. The project is searching for family members who have been through the experience of having to make a donation decision and who are willing to talk about aspects of their experience. The interviews will be informal and not too intrusive. The researcher is interested in the environment in which decisions are taken and the ways in which this, together with family members’ background and experiences, influences the final decision.

Call for volunteers to participate in this study

This project is concerned with donor families’ experiences and background and the donation decision within the hospital setting. By learning about what you and other donor families have experienced within the hospital setting, we hope to find out more about the environment and the donation decision. I am therefore asking relatives to share their experiences, their opinions about the hospital setting and any thoughts they have regarding transplantation during a short 60 minute meeting at a mutually agreed time. Anything you may say during the study would be treated as confidential. Your name will not be recorded anywhere within the study, and of course, you would be completely free to withdraw at any time.

Any help would be hugely appreciated. The study is being fully supervised by Dr. Mike Nicholson and Dr. Sarah Xiao.

Thank you,

LLTGL Team x

Speakers project training session: 11th June

We have just booked a training session for our Speakers Project, which will take place in the morning of Saturday 11th June in Richmond, Surrey.

Over the years, we have discovered that one method of raising awareness triumphs above all others; telling a real life story. Facts and figures are definitely useful, but to really make people sit up and listen, we need your help.

We are just starting to roll out this exciting new project, the aim of which is to train and support members of the transplant and organ donation community to give talks and presentations. Have you been touched by organ donation in some way? Perhaps you have watched a friend go through the struggles of waiting, maybe a family member became a donor. Are you yourself a transplant recipient? Whatever your link, you could share your story and open people's eyes as to the importance of organ donation.

Come along to our speakers training session, where you will get advice and training on how to maximise the potential of your story. We want to help and support people to share their experiences, and have received extremely positive feedback from those who have attended so far. By sharing your story, you could educate others and encourage people to sign up, and we can help you deliver your story effectively and with confidence.

If you are interested in attending on the 11th June in Richmond, Surrey, please email info[at]lltgl.org.uk. The sessions are completely free, but we have limited places, so please get in touch asap!

We look forward to seeing you there!

x

Emily

I thought that I should really finish off this week's blogs myself, since my own need for a transplant was due to Cystic Fibrosis.

I had a happy and healthy childhood. I don't remember feeling that different from my friends; even though I had the daily regime of physiotherapy, nebulisers, antibiotics and inhalers to fit in, my parents never treated me any differently.

As I grew older, the lung element of the disease began to show itself, with increased hospital admissions, a chestier cough. By the time I went to university, my lungs were functioning at about 45%, and whilst I was able to live independently and have a fantastic time, I tired far quicker than my friends, became breathless very easily, and hospital admissions were now more frequent and lasted up to a month at a time.

In 2004, I was told I needed overnight oxygen. Then later that year, a wheelchair. Watching my lungs decline in function was frightening and frustrating, but I accepted these weapons and used them to fight back, to try and retain some independence. In 2005, I was told that my lung damage was so severe, I would need a double lung transplant in order to survive. I was given a prognosis of about 12 months without one.

Due to the shortage of donors, I had to cling on for 22 months before my call finally came. I was extremely ill by the time I got my call, which in turn meant my recovery was much more complex and prolonged than it could have been. However in March 2007, I was finally discharged from Harefield hospital, and walked out of the hospital doors for the first time in years with no oxygen, no wheelchair, no wires or gadgets at all. It felt strange, unfamiliar, frightening...and indescribably exciting.

People often asked me what else has changed as well as my breathing, and it would actually be easier to try and find something that hasn't changed. Gone is my pale and scrawny frame, gone is my whispy hair and weak voice. I can breathe, so I can talk, sing and laugh without pain. I can walk, I can climb stairs, I can work, I can be a sister, a friend, a daughter, a wife, and not a dependant. I have ambitions, I have dreams and goals....I have a future.

I am only here today thanks to the incredible gift of organ donation, but I have lost far too many of my CF friends, whose calls did not come in time. People with Cystic Fibrosis are living longer and fuller lives than ever before, but it is a disease that still takes 2 lives every week. Please, take a look at the CF Trust's website, and please, sign the organ donor register.

Thank you x