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Patient stories

Cystic fibrosis transplant

 The hardest thing about life for James Machin in the aftermath of his lung transplant is not the “constant pill-popping,” but the need to maintain a ‘healthy’ distance from his twin sister.

 

James and his sister are thought to be unique – the only twins in the world with cystic fibrosis (CF) where one has gone on to have a lung transplant.

 

Because James’ immune system is suppressed to prevent his body rejecting his new lungs, he is particularly vulnerable to the lung infections that are still a feature of Helena’s life.

 

'Empowering challenge'

 

“The separate bathroom facilities, washing machines and washing up arrangements we have to have is one thing,” says James, “but imagine the scenes at Christmas: yes, thanks for my present Hellie – I’ll just go and disinfect it before I unwrap it!”

 

James has a keen sense of the absurd and a positive outlook on life, but a clearheaded acceptance of the realities of life with CF. “CF is a terminal illness and so it is like fighting a losing battle,” he says. “But I don’t see it as a disability. It might sound cheesy, but I see it as an empowering challenge.”

 

An unlikely series of events brought him to the point at which he opted for a lung transplant. Firstly he spent too much time in the dark room preparing for his photography ‘A level, and was hospitalised for two weeks after the chemicals he used adversely affected his lungs.

 

Worldwide contacts

 

Then, after his exams, he went to Rome and caught an unidentified tropical virus. “I went to Rome as a relatively fit person but came back in a wheelchair. I was rushed to Royal Brompton as soon as I got home. I think I only pulled through because Professor Hodson used her worldwide contacts to find me an antibiotic treatment that I wasn’t resistant to.”

 

James was discharged about two months later, but was constantly in and out of Royal Brompton in the months that followed until a CAT scan showed that his lungs were down to 20 per cent of normal capacity.

 

He recalls: “It was then that the doctors suggested a transplant. I didn’t want it at first. I was scared at the thought of it. But I spoke to my family and later the same day decided to go onto the waiting list, although at the back of my mind I thought I might still pull out when it came to it.

 

Transplant wait

 

“Life was kind of grim,” he says of his twenty-month wait for a transplant. “I was totally dependent on others, couldn’t walk more than eight yards and was mostly cocooned in bed. My whole life had collapsed. Thank God for computers, though! At least my fingers still worked.”

 

It was during one of his many stays at the Royal Brompton that a suitable heart became available. “I was whisked off to Harefield and by 10.00 a.m. was in surgery,” James remembers.

 

“The next thing I knew I woke up at 3.00 p.m. that same day and there was mum, Dad and the hospital priest Father Doyle. It had gone astonishingly quickly despite the fact that the surgeons had decided to transplant just the lungs, one at a time, making it a more complicated procedure than transplanting heart and lungs as one unit. I was so pleased – mainly for sentimental reasons – that I’d got to keep my heart!”

 

Lungs free from cystic fibrosis

 

James now returns to Harefield just once every four months for routine tests. Although he still has the considerable digestive problems that are associated with CF, his lungs are now a CF-free zone. His routine is free of the twice-daily sessions of physiotherapy, necessary to literally beat mucus out of his lungs.

 

“It means I can now stay wherever I want to overnight. I do have a whole new regime of pills, but it’s not a problem – I’ve done that all my life.”

 

He now walks or cycle every day, is planning a long-distance cycle to Paris and a trip to Spain before heading to University where he has a place to read English.   

 

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