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

Victoria

Victoria Tremlett is 24 years old and has end-stage Cystic Fibrosis. She has been on the waiting list for new lungs almost 4 years.

Victoria (Tor) was diagnosed with Cystic Fibrosis (CF) when she was 2 years old and during her childhood she remained fairly well. By the time she reached her teenage years she had started to feel the effects of her CF, she found herself becoming increasingly more breathless.

Things came to a head in December 2006 when she collapsed and was rushed to hospital, placed on oxygen and given intravenous drugs to stabilise her. Her lung function had crashed to 23%. She returned home after two weeks but her lung function did not improve and she began using oxygen 24/7 and a wheelchair to get out and about.

Tor says “Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold. I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day. “

In a recent blog entry, Tor speaks openly and frankly about the struggles of every day life with end-stage CF: "I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now."

Victoria has had 7 false alarms in the time she has been waiting – this means that she has been called for transplant but on arrival has been told there is a problem, such as damage to the set of lungs, and the operation has not gone ahead. Tor needs this transplant soon in order to survive.

To follow Tor's journey please visit her blog here.

To help give Tor and others like her a chance, please consider signing the Organ donor Register.

Thank you.

Cystic Fibrosis - a mother's perspective.

This frank and emotive piece is written by Paula Elwood, who is mother to eight year-old Holly, who has CF. Above: Holly is on the left, and her little sister Ruby (who does not have CF) is on the right.

I was at a mother & toddler group when the realisation first struck me. Smiling as we watched our children play, my chatty fellow mums jokingly guessed what their sons and daughters would be when they grew up, who they would marry, what sort of men and women they would grow to be. I said nothing. Not once since my daughter had been born and diagnosed with cystic fibrosis had allowed myself these simple daydreams.

Eight years on and Holly is a smart, beautiful, courageous and sensitive girl, who takes everything in her stride. She loves her dancing, swimming, trampolining and getting up to mischief with her little sister and wide circle of friends. Apart from a couple of major bugs and dozens of minor ones, she’s stayed relatively healthy – and it’s easy to forget she’s not exactly like her friends. But still, I daren’t look into the crystal ball.

Physiotherapy, cocktails of tablets, nebulisers, hospital visits and stays are part of our normal routine and have been since Holly was born. Every year another few tablets are added, perhaps an inhaler, perhaps a few additional tests… As CF is a progressive condition and currently without a cure, it’s probably best not to dwell on the past and the gradual tweaks being made to her care.

Instead I live in the present. Balancing Holly’s routine and the day-to-day demands of life with a ‘pathological’ need to squeeze the most out of every day together, every weekend, every bedtime story – to give my family the most fun possible today, because who knows whether we’ll still be able to do the same tomorrow, next week, next month, next year?

Well-meaning friends have said they admire my lust for life and the non-stop adventures I seem to share with my girls, and some have even been misguided enough to call me ‘brave’. In fact the opposite is true.

We live as we do because of my fear. Fear that Holly won’t have the career, the wedding, or grow into the amazing woman I know she could be. Fear that one day CF will have ravaged her lungs to the point that a transplant is her only option. And fear that if we take that option, she will be one of the hundreds who die waiting every year because of the lack of organ donors.

Instead I hope only that Holly is happy, healthy and has the best possible quality of life for as long as possible, and trust that when the time comes, a heroic stranger will be there to give the greatest gift of all – the gift of life – and a chance to dream of the future.

What is cystic fibrosis?

The Facts:

o Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.

o Cystic Fibrosis affects over 9,000 people in the UK.

o Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.

o People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.

o During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.

o Only half of those living with Cystic Fibrosis are likely to live past their late 30s.

o There is no cure for Cystic Fibrosis.

Symptoms:

Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract. Symptoms of CF can include a troublesome cough, repeated chest infections and poor weight gain. A combination of physiotherapy and medication such as inhalers, nebulizers and antibiotics can help control lung infections and prevent lung damage.

Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, and so people with CF take enzymes to compensate for this problem.

To find out more about Cystic Fibrosis please visit : The CF Trust Website and please keep tuned to this blog to read some personal stories of people living with Cystic Fibrosis.

Cystic Fibrosis Week - 8th - 14th May

Today marks the start of Cystic Fibrosis (CF) Week. CF affects mainly the lungs and the progressive nature of the disease means that people in the end stages of the disease are often referred for transplant. Despite the considerable burden of treatment, people with CF are determined to live their lives to the full. Your support during Cystic Fibrosis Week will help people with CF to live longer and fuller lives.

Money raised during Cystic Fibrosis Week will help the UK charity the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of CF. It will also help them improve the care of people with CF, and will help provide direct support for people with CF and their families.

The Cystic Fibrosis Trust is one of the leading investors in CF research in the world. They fund work to control the symptoms and treat the cause of Cystic Fibrosis. They also fund research into gene therapy to add a healthy copy of the gene to the lungs of those with Cystic Fibrosis. A major clinical trial is hoped to begin later this year involving up to 100 young people with Cystic Fibrosis. This is the first time in the world CF gene therapy has been studied this way.

Find out how you can get more involved in CF week by visiting the website here: http://www.cftrust.org.uk/