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/

Robyn's Rainbows

Recently we've been talking about fundraising, another way to donate is through our JustGiving page that we set up to collect money specifically for our Robyn's Rainbows fund.

This is an initiative set up by LLTGL after the death of our special friend Robyn Tainty, who lost her battle for life whilst waiting for a double lung transplant in September 2007, aged just 24. Before her death Robyn was sent a balloon as a beacon of hope. Putting a smile on somebody's face is important, especially when there isn't much to smile about - and LLTGL continue to fund this project.

Following nominations from the public, Live Life Then Give Life sends struggling members of the transplant community a small beacon of hope in the form of a balloon, to let them know they are being thought of. The aim is to create a rainbow on the darkest days for those in need; to remind them that they are not alone and that sunshine might be just about to break through...even just to bring a smile to their face.

It's simple. By raising money and raising awareness! Just £12 will allow us send a Robyn's Rainbow to someone in need. We want to be able to support as many people as possible and to keep them smiling whilst they fight and hope, waiting for the call that if it comes, will change their life. Robyn’s Rainbows is dedicated to Robyn and the rainbows she brought into other people’s lives...just by being there.

Here are a few examples of Robyn's Rainbows that we have sent:

T-Shirts!

Linking to our last blog about raising awarness, one of the easiest ways to do this is by wearing one of our Live Life Then Give Life T-shirts! Live Life Then Give Life began with a T-shirt campaign in 2006 and in 2011 we designed and released a new range of T-shirts to add to the collection with our now infamous I'd Give You One tag line. The design is currently available in four unisex sizes.

The T-Shirts cost only £10.00 each +P&P. If you are ordering more than 10 t-shirts, please contact us with your order directly, as we can arrange more efficient postage for larger orders.

If you would prefer not to order online, you can download this printable form and post it to us with a cheque or postal order for the correct amount.

Why buy an 'I'd Give You One' T-shirt?

• To show your support for LLTGL;
• To raise awareness about Organ Donation;
• To stimulate conversation and encourage others to think and talk about their wishes.

To order online please visit the T-Shirts section on our website here.

So, think about it, talk about it and do something about it by buying one of our fab t-shirts and helping us spread the word!

Fundraising and Awareness

We often get asked questions about how to raise money, create events and raise awareness, so we thought it was about time we gave you some ideas!

How about participating in a Challenge event to raise money for us or creating your own fundraising oportunity. You can download our A – Z of fundraising ideas for some inspiration, it takes you from Abseiling to Zip Slides and everything in between. If you hold an event we’d love to hear about it and see any photos you have – you never know, you might even make it here onto our blog or be our fundraiser of the month on our website.

If you are raising money for us there are lots of ways you can do this and now It’s easier than ever thanks to Justgiving and Virgin Money Giving! If you are doing it the old fashioned way collecting money from your friends and colleagues you can download our sponsorship form here.

As for raising awareness, try and find out when local fairs/craft shows/fetes are being held and approach organizers about the possibility of holding a stand or stall. NHSBT have lots of free materials to brighten up your stand — find out more by visiting organdonation.nhs.uk they even give you publicity tips as well as providing their free promotional materials catalogue.

Another way you could raise awareness and money for us is through your business. We are a small energetic and up-and-coming Charity and we can arrange for one of our Trustees to come and talk at your workplace to explain more about what we do and why our work is so important. If corporate sponsorship is something you or your business might be interested in then please do contact us via our contact form on our website.

We hope we have given you some ideas. Thanks as always for your continued support.