Little Miss Positive, Georgina Compton, is making the most of her second chance at life.
Last year Georgina (George) Compton faced the very real prospect of dying at the age of 25. For weeks she clung on to life and thousands of people who had been following her battle with end-stage cystic fibrosis via her online blog feared the worst.
When George’s condition escalated suddenly, her mother (under strict instructions from George, who had always known that a situation like this could occur) continued to post updates on her blog.
Accompanied by harrowing photographs one thing came through loud and clear. George’s determination to live and her positive mindset was the main thing that was keeping her going.
When she received a life saving double lung transplant at the eleventh hour, George who lives in Cobham, Surrey, UK, could be forgiven for suffering ongoing traumatic after effects from her ordeal – but the fact is she is just too busy!
“Even after my transplant, the recovery was difficult” said George “I had blocked bowels, I lost my voice and had muscle wastage because I had been unable to move for so long. But It’s amazing how quickly your life can change and what I had to deal with for so many years has quickly become a distant memory!”
“I obviously did get very emotional at times during my recovery and when I read the blog posts that my mum wrote it left me in tears.”
“But I feel very lucky to be here now, oxygen free and breathing without a struggle, without even having to think about breathing!
“Since coming out of hospital I feel like a hyperactive child on a sugar rush! Being sad just doesn’t enter my head. I’m embracing every minute of life and I have set myself some goals.”
Top of that list of goals is George’s determination to raise awareness about cystic fibrosis and organ donation.
She is urging people, businesses and clubs to take part in a social media campaign called the ‘Breathe With Me Strawfie Challenge’ during May. In fact she feels so strongly about getting her message across that she recently took part in a photo shoot with only drinking straws and a feather boa covering her modesty.
“I wanted to do the shoot because I know that many people struggle with their body image after transplantation” said George.
“Apart from the scars from my lung transplant, chest drains and feeding tube, I have gained weight post-transplant mainly due to the steroids I have to take. I have been through so much but if I can help people to understand the toll cystic fibrosis takes on your body, then doing the shoot will have been worthwhile. There are 70,000 people worldwide with this disease and we need the support of the wider public to raise funds and awareness.”
“I want people to take the Strawfie Challenge so that they can understand what it is like to have to struggle for every breath” said George.
“The challenge is very simple. You try breathing through a narrow drinking straw, with a pinched nose for 60 seconds – no cheating! Then you take a straw breathing selfie – a Strawfie – and post it online. Post a comment with your selfie about how breathing in such a restricted way made you feel, then make a donation by texting BWCF64 £5.00 to 70070 or visiting https://www.justgiving.com/TWF-breathewithme. The donation will go to the Cystic Fibrosis Trust in the UK, but people can take part in other countries and change the donation details to a CF foundation of their choice.
“As an added twist for May this year, we are asking people in the UK to wear yellow lipstick when they take their Strawfie (or purple for USA or Ireland)” said George.
“Yellow is the brand colour of the Cystic Fibrosis Trust in the UK and we are trying to ‘Get CF on everyone’s lips’ – which is also a great hashtag for when people post online. Other countries can change the colour according to their own CF brand colour.
“Alternatively, people can do a ‘Fight CF’ theme – with two yellow (or purple) stripes on each cheek – like camouflage stripes. Face paint is great for either the lips or the cheeks, so there is no need to splash out on a new lipstick!”
“The idea is to have as many people as possible posting their strawfies from 1st May onwards. We also want people to nominate their friends to take part – like with the Ice Bucket Challenge.”
Cystic fibrosis is a life-shortening genetic condition – only half live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
George was diagnosed with CF at 18 months old after many months of hospital admissions for bad chest infections. She spent much of her childhood in and out of hospital.
She was first considered for a lung transplant at the age of nine. She fought back and won a reprieve but found herself back in the same position in 2011. Her lung collapsed and she needed a chest drain. After seven months of rapidly declining health she was thrown a lifeline – she was given a new drug Kalydeco. This gave her a reprieve for a while.
“During that time I got engaged, moved house, got married, got a dog, had a few holidays and almost felt normal again – at one point I was completely off oxygen.”
“Two years later I started to decline again, Kalydeco doesn’t undo damage that has already been done and my lungs have a lot of damage to them. I was back on oxygen all the time and using my wheelchair again. After a very hard emotional decision I put myself back on the transplant list in September 2014.”
By the summer of 2015, George was spending most of her time at Frimley Park Hospital. Then in July her condition was suddenly dramatically escalated to critical, when a stent that had been inserted to widen a vein, slipped into her heart.
The only way to remove the stent was with open heart surgery, but George was too unwell for the operation. The only option was for her to have a double lung transplant, allowing the surgeons to perform the heart surgery at the same time.
She was transferred to Harefield Hospital in Middlesex, where she spent her 25th birthday.
She said: ‘I was deteriorating rapidly and worse still, I was called in for a transplant three times but each was a false alarm.”
George was literally clinging on to life – most of the day she was too exhausted to move. However, when the doctors visited her, she forced herself to be alert and lively, so that they would believe that she was well enough to cope with the transplant if an organ became available.
Finally, in August, she received a double lung transplant and had the heart surgery she desperately needed. Miss Compton said:
“The average wait for a transplant is around two years. But at only 4 feet 11ins tall, my size always went against me. Most lungs were too big for my body and in the end my new lungs still had to be cut slightly to fit my frame.”
George will have to take anti-rejection drugs for the rest of her life and she still has cystic fibrosis. But she is determined to grab this second chance at life and make the most of every day.