Regular readers will know I am doing my 2013 miles in 2013 challenge in aid of the Cystic Fibrosis Trust. I have been surprised since I started fundraising for the CF Trust just how many people are unaware of this disease and so I hope my efforts will not just raise money, but also awareness of the UK’s most most common life-threatening inherited disease.
Here is an article from the Express about Oli Lewington, a man living with Cystic Fibrosis.
Doctors have been saying Oli Lewington has only months to live since he was a baby. He was diagnosed with cystic fibrosis (CF) at 18 months old and specialists told his mother he’d be lucky to live until he was three.
When Oli, now 30, reached that milestone they reviewed their expectations, declaring he would only make it to five and then seven. At 13 they stopped trying to guess.
However in 2004, when Oli was 21, he became seriously ill on a trip to Texas. “I had a partial lung collapse which meant I couldn’t fly because the pressure of an airline cabin means there’s a fairly high chance the lung will collapse completely,” he says.
Unable to afford America’s sky-high medical costs for antibiotics, he was forced to drive hundreds of miles to Florida to take a cruise back to the UK.
At home and finally on antibiotics he recovered but he says: “Once you start a downhill slope it’s very difficult to arrest it.”
CF is one of the most common life-threatening inherited diseases with more that 9,000 sufferers in the UK. It is caused by a faulty gene carried by both parents and controls the movement of salt and water in and out of the cells within the body. This affects the internal organs, especially the lungs and digestive system, by clogging them with mucus, making it hard to breathe and digest food.
“With CF the mucus in your lungs is thicker and stickier so it traps more bacteria which then develop and grow,” explains Oli, from Milton Keynes, Buckinghamshire. “The infections get worse over the years and each one does a bit more damage until your lungs are so full of mucus and so scarred that you can’t do anything about it.”
By January 2005 he was spending more time in hospital than at home. “I wasn’t improving and every time I had an infection my lung function was dropping. I began to wonder about transplants.”
Oli’s medical team were already talking about a lung transplant but hadn’t yet broached the subject with him.
“It’s a difficult subject to bring up as the criterion for being placed on the transplant list is that you have less than two years’ life expectancy. And the odds of getting one in time are still only 50/50.”
He underwent six months of tests and hospital visits to certify he was a justifiable candidate for a transplant. “There is a very limited supply of organs and the hospital had to justify my transplant needs. If I got one, someone else wouldn’t.
“You also need to be well enough to withstand trauma because you’re having two vital organs removed and replaced. One advantage is that CF patients are generally young and they’re fitter than most people with other chest conditions.”
In June 2005 Oli was finally added to the transplant list. Those awaiting transplants must be on call 24 hours a day and must alert their hospital if they travel further than an hour away.
Lung transplants must be performed very quickly as the organs can only survive several hours outside the body.
“My life was on hold,” says Oli, who blogged about the experience and recently turned his entries into a book, Smile Through It – A Year On The Transplant List. It took more than two years and four false alarms before he finally went into theatre on November 20, 2007.
“It was a very surreal experience. Not many people can identify a time when there was a real chance they’d die,” he says.
“I only got emotional when I had to say goodbye to my family and girlfriend Kati.
“The next thing I remember is waking up in intensive care dosed up to the eyeballs with morphine.”
Within days Oli was up and about, walking down the hospital corridor with the aid of a walking frame. “It felt strange afterwards. I couldn’t take a deep breath straightaway but slowly and surely I realised I could do things I couldn’t do before.”
Yet someone’s death meant his survival. “I still find it hard to fathom to a certain extent,” he admits.
“You’re conscious that every time you breathe in it’s going into someone else’s lungs. I think about my donor every day.
“I sympathise with the family. There can’t be anything worse than having to make that decision but somewhere in the UK in November 2007 a family made that decision and it gave me a second chance at life.”
Oli will always have to take a cocktail of drugs to prevent his body from rejecting the lungs.
“The drug regime pounds your kidneys pretty hard and your immune system is constantly suppressed. I don’t travel on rush hour trains or eat shellfish because if I’m sick I won’t absorb the drugs. There are also knock-on factors from CF such as digestive issues, Ihave diabetes and mild osteoporosis.
“Also when you have CF you need a huge amount of calories to fight off the constant chest infections so when they stopped and I carried on eating as I’d done before, I put on weight.”
Statistically 75 per cent of patients survive the first year after a transplant and half survive five years. “Once you get to five years you’re fairly stable,” says Oli.
“Realistically, I’ve got only another five or 10 years left.
“I count myself lucky. I’m working full time following my passion of being a filmmaker. Things like getting married to Kati last year, being able to celebrate with my family and enjoying times I never thought I’d see, they’re the magic moments. I want to know that my donor would be proud it was me who they saved.”
2013 Miles in 2013
The first person to commit to sponsoring my 2013 mile challenge has committed to 1p per mile (£20.13 in total) and this got me thinking. I am hoping that as many as possible of those reading this will commit to do the same and the best thing is, if each person does this on a “pay as you go” type approach all you will need to part with is approx £2 just after each pay day. In January I completed 205.9 miles, so if you can please spare £2.06 to help the Cystic Fibrosis Trust it will be greatly appreciated.
The easiest way to give your sponsorship is to visit my Just Giving page: http://www.justgiving.com/2012-AYearWithoutBeer-CF.
2013 Miles in 2013 – The rules
The rules for my 2013 miles in 2013 challenge are quite simple:
- All miles must be completely self powered (no motors, sails, etc)
- I must be able to evidence all miles, either via GPS or with a picture of any static gym equipment
To complete my 2013 miles I will be running, cycling, rowing and who knows, I might even try a few other self powered methods along the way.