For gift of life

The People - - NEWS FEATURES -

least 10,400 peo­ple in the UK have the dis­ease, which causes the lungs to be­come clogged with sticky mu­cus, mak­ing it dif­fi­cult to breathe and leav­ing sufferers far more vul­ner­a­ble to lifethreat­en­ing in­fec­tions.

One by one, the group be­gan re­ceiv­ing trans­plants, with Char­lotte hav­ing the first in Oc­to­ber 2011, and Josie the last in July 2016.

Those who had op­er­a­tions of­fered re­as­sur­ance to those still wait­ing, and they all checked in with each other reg­u­larly – de­ter­mined to keep their spir­its up and their bond strong.

Then, hav­ing all re­cov­ered from their trans­plants and ad­justed to their new nor­mal, the group were fi­nally able to meet in per­son for the first time in July 2018, toast­ing their health – and friend­ship – to­gether over a bot­tle of fizz in Lon­don’s Chi­na­town. Ge­orge said: “We chose Lon­don as that’s the eas­i­est place for ev­ery­one to get to. A cou­ple of us have met one-on-one over the years but we’ve never all been to­gether as a group be­fore. “It was so amaz­ing to see them all there in per­son and to laugh, drink and cel­e­brate life to­gether.” Now the group are all supporting the Sun­day Peo­ple and Sun­day Mir­ror’s Change the Law for Life cam­paign. They are call­ing on peo­ple not only to sign up as donors but also to share those wishes with their loved ones. Libby said: “I want to ask peo­ple, if your mum, dad, daugh­ter, brother, friend or even you were ill, would you take a donor or­gan? “If the an­swer is yes then you need to think about giv­ing one too.” Holly van Gef­fen, 26 HOLLY was di­ag­nosed at six weeks. With physio and sup­port from loved ones she felt rel­a­tively well un­til 14.

Then an in­fec­tion meant she needed in­tra­venous an­tibi­otics ev­ery three months. At 18 she suf­fered a col­lapsed lung.

Doc­tors raised the idea of a trans­plant but Holly, a print de­signer from Le­ices­ter, was afraid. Then, just be­fore she Sharon Brennan, 37 BORN with cys­tic fi­bro­sis, health jour­nal­ist Sharon suf­fered with per­sis­tent in­fec­tions.

Even­tu­ally they caused ir­repara­ble dam­age to her lungs, leav­ing her in need of a life-sav­ing trans­plant.

And five years ago, in Au­gust 2013, she re­ceived her new or­gans. Speak­ing of

Char­lotte Davies, 24 CHAR­LOTTE’S weight fell as a new­born and she failed to thrive. A sweat test at three weeks re­vealed she had cys­tic fi­bro­sis.

From two, she had three­monthly in­tra­venous an­tibi­otics at and she was tube-fed from three.

She said: “I tried my best to get on with things. My fam­ily were al­ways care­ful to teach me that my health shouldn’t hold me back.”

At 13, Char­lotte, now a TV pro­duc­tion as­sis­tant, be­gan to lose weight and her lung func­tion de­clined. By 16, it was just 26 per cent. Af­ter Josie Ste­wart, 25 AF­TER chest in­fec­tions and a strug­gle to gain weight, Josie was di­ag­nosed aged two.

Ini­tially doc­tors thought she was just be­hind in hit­ting mile­stones be­cause she had been born pre­ma­turely with her twin Tommy, who does not have cys­tic fi­bro­sis.

At three she be­gan re­ceiv­ing in­tra­venous an­tibi­otics and was tube-fed.

“Child­hood in­volved chest physio and neb­u­lis­ers, even when I was well,” she said.

Aged 22 and a fash­ion stu­dent, Josie started to de­cline – which she knew could hap­pen but never thought it would be so rapid.

Be­fore she knew it, she was on oxy­gen 24/7, cling­ing to life.

In March 2016, Josie was listed for a trans­plant and put on an ECMO ma­chine, was 21, a friend and fel­low cys­tic fi­bro­sis pa­tient died.

Holly said: “I wasn’t far off be­ing as poorly as her so it re­ally woke me up.”

She went on the list at 22 and had the op in 2015.

“It’s been a long re­cov­ery but I feel so lucky to be here. I’m an or­gan donor my­self. I don’t know what I’ll be able to give but my fam­ily know that, when the time comes, that’s what I’d want.” the friend­ship she has forged with the other women, Sharon, from South Lon­don, said: “It was in­cred­i­ble to meet my tribe – we are all at dif­fer­ent stages of life but all de­ter­mined to make the most of our sec­ond chance.

“And it’s nice to be re­as­sured on the tough days that they are all there to talk to, when­ever needed.”

spend­ing the last five weeks of her GCSES in hos­pi­tal, a trans­plant was men­tioned in Fe­bru­ary 2010 but she did not feel ready. Her lung col­lapsed two months later. By Septem­ber she was on oxy­gen 24/7. She went on the wait­ing list and got the call ten months later. Doc­tors showed Char­lotte, of Dover, Kent, her new lungs on a screen. She said: “My old ones had been black­ened, these were pink and healthy. I re­mem­ber the first proper breath I took. “I’d never known what it was like to take a prop­erly deep breath be­fore.” where blood is re­moved and then pumped back into the body so it by­passes the heart and lungs, al­low­ing them to rest.

Then in July that year Josie, from South East Lon­don, got the call for a lung trans­plant.

“I know false alarms hap­pen so I’d re­signed my­self to the fact it may not go ahead,” she said. “Then, sud­denly, doc­tors were in my room, telling me we were good to go.

“I’d been hav­ing panic at­tacks but be­ing wheeled to theatre, I felt re­mark­ably calm.”

Medics later found a bleed on her lung they wanted to mon­i­tor so Josie was kept asleep for a few days af­ter surgery. On com­ing to, doc­tors switched off her oxy­gen to see how she’d re­act. She thought she was still hooked up to the ma­chine un­til they told her: “It’s you. You’re breath­ing.” Josie said: “It was re­ally emo­tional.”


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