Keeping a healthy distance apart

By Jane Elliott BBC News health reporter

The twins can not be too close

James and Helena are an unusual pair of twins.

They are as close as siblings can be, but always have to keep a "healthy" distance between them.

They can never hug and always have to travel in separate cars.

They even have separate washing facilities.

For the 24-year-old twins from Wales were both born with cystic fibrosis (CF).

Three-and-a-half years ago James had a lung transplant, but his sister did not.

I am not allowed to hug him and that is the one toughie Helena

And because she still carries a bacterium called Burkholderia cepacia, which both twins had, the two must remain apart.

This organism rarely causes infection in healthy people, but can be a problem for persons with CF, and certain other individuals who cannot fight infections properly.

A few people who have B. cepacia complex may develop "cepacia syndrome" which can result in severe chest problems, accompanied by a fever and a rapid decline in health.

Because James' immune system is now suppressed, to prevent his body from rejecting its new lungs, he is particularly vulnerable to the germs still carried by his sister Helena.

B.cepacia can survive on the skin for up to an hour, on a moist surface for a week and in water for years.

So to limit cross-infection meetings with the twins are usually held in large open areas such as parks.

Helena said B. cepacia could have devastating consequences on James' health.

"There is nothing I could catch from him, it is just the risk of me giving him something. I do carry the CF bug so we have to keep apart.

"I have not really been able to mix with him since the operation and that is not something we were really forewarned about. "

Transplant

Helena, an actress, said that even at their 21st birthday party they had to sit at opposite ends of the room with the French windows open.

"If we are in the same room and I need to cough I have to go into another room to make sure I am away from James.

"We have to eat in separate rooms and he has his own set of cutlery, cooking utensils and towels."

But Helena, whose condition has not deteriorated enough to need a transplant yet, said they were small sacrifices to make for her brother's life.

"I am not allowed to hug him and that is the one toughie, but it is not the end of the world and I would rather we were living with these conditions than he was not here at all."

James' condition deteriorated while he was preparing for his A-level in photography.

He said he spent too much time working with chemicals in the dark room and that this combined with a unidentified tropical virus he caught in Rome, left his lung capacity at just 23%.

I was blue-lighted all the way to Harefield for the operation James

For 20 months he was placed on the transplant list and then while he and his sister were having a regular treatment session in adjoining rooms at the Royal Brompton he got the call to go to Harefield for his transplant.

"The last thing I saw as I left the Brompton by ambulance was Helle standing in a big T-shirt in the rain, without an umbrella, waving goodbye," he said.

"She was getting all wet and it was like a scene from a film. I did gulp a bit and then I was blue-lighted all the way to Harefield for the operation."

James had both lungs transplanted separately, a method which surgeons prefer to use if the patient is strong enough, because it lasts better.

James is vulnerable to infection

"I think I must have had a different surgeon on each side, because I had different sorts of scars. The operation was very quick. I think I was only in there about four hours.

"I was only in intensive care for one day, but then I spent two months in the ward recovering and was allowed home on Christmas Eve when I was able to go to midnight mass."

He said his faith, which is very important to him, had helped him through the transplant and said his priest Father Patrick Doyle had been invaluable.

Now a student at York University, where he is studying English, James said he feels incredibly healthy and has even been able to undertake a couple of long distance cycle rides, one to Paris.

Susan Madge, consultant nurse for cystic fibrosis at the Royal Brompton and Harefield, said the twins had a particularly difficult time when they were parted.

"They are very close and their mother has been very involved in their care. They have always been looked after together and have got a lot of strength from each other."

But she said that now James was at university that it seemed a more natural separation for the two.

She added that since the operation the twins' health status had been reversed.

"James had always been the sicker of the two, but following his surgery Helena is the one needing regular treatment for her condition."

The twins' mother Marianne said that she and her husband John were incredibly proud of their children.

"We have been told that they are the only twins in the world where one has had a transplant and both have cepacia and CF.

"They are amazing kids. They are quite remarkable and they do not make a fuss about their illness."

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