A 10-day hike in the Burren organised by a French film company highlighted how organ donation can change the lives of sufferers of cystic fibrosis
VINCENT GRÉGOIRE no longer takes the lift when he enters tall buildings. Two years after his transplant operation in Quebec, he now has a lung capacity of 103 per cent – 3 per cent more than normal for a person of his size and weight – and prefers to take the stairs.
The 27-year-old jogs and cycles and generally celebrates his new life after suffering from the debilitating effects of cystic fibrosis for most of his life. “You never want to be lazy again,” he says. “You can use your lungs now so you do it.”
In the run-up to the operation, he was losing his lung capacity before he was put on a mechanical ventilator.
Grégoire was one of an international group of six people who had to have lung transplants because of cystic fibrosis and who spent 10 days hiking in the Burren earlier this month.
As guests of a French film-making company, Magala Productions, the six, ranging in age from 17 to 47 years old, spent their time enjoying the Co Clare scenery while bonding with one another and relating their experiences to camera.
Director of the film project Frédéric Lebugle said he and his production team were surprised at their levels of fitness.
“We thought it was going to be very hard for these people walking and putting in a lot of effort. We said: ‘It will be really hard and we have to be careful not to walk too long in the mountains.’ But in fact it was very hard for the production team. We had to run all the time with the cameras and heavy equipment. We were very tired and they were better than us.”
The project is being supported by the French Gregory Lemarchal Association, which raises funds for research and building awareness of the hereditary disease. It is also being supported by the Greek-born, French film maker Costa-Gavras, whose films in English include the 1982 political thriller Missing.
“He supports the project. Because he is a very famous film director it will help to have him for the promotion of the film in France and abroad,” says producer Laurence Lafiteau.
Instead of focusing on how cystic fibrosis incapacitates, the documentary is emphasising the remarkable turnaround in people’s lives when they have a successful double-lung transplant.
“This film will show people walking and in good health and we see how they feel. It’s a new life for them: they can go travelling, they can go walking, they can go doing what they could not do before,” Lafiteau says.
“We wanted people from different countries to show that the illness is not only in France, not only in Ireland, but is a worldwide subject.
“Once we arrived here we found out that Ireland has the highest rate of cystic fibrosis in the world. At the beginning we did not know that.”
One of the project’s aims is to highlight the issue of organ donation, the rates of which remain low in many countries, although Ireland, at around 22 donations per million, compares well internationally.
“It’s to raise awareness of how people can live if they have a transplant operation and how they can die if they don’t. It will explain it without showing hospitals,” adds Lafiteau.
An added complication for people on lung transplant waiting lists is that there is a small window of opportunity for transplanting lungs retrieved from a donor. Lungs and hearts will not survive longer than four to six hours after retrieval.
The documentary was filmed in the Burren after one of the producers, Florence Masset (39), who also has cystic fibrosis, and had a transplant operation in Paris in 2003, visited the region last year and fell in love with it.
Her operation was complicated by the fact the lungs, from a 14-year-old donor, had to be flown from Nice and the surgeons were pushing at the boundaries of the safety margin.
Masset, who works for Costas-Gavras, developed a serious heart infection which required further surgery. “It was more difficult than the lung transplantation. Now I have to take antibiotics intravenously every day.”
Although cystic fibrosis patients always require a double-lung transplant, one of the group, Sabine Vast (31) from Paris, received a single lung that was divided in two in 2001 before being transplanted.
“I almost died. The doctor said to my parents in the morning that I was finished and in the afternoon he said he had a solution. And the next morning I was alive and I was breathing.”
The one Italian in the group, Gino Vespa (47), made medical history when he became the first HIV patient in the world to have a successful lung transplant. “We have many problems in Italy too to find organs for transplantation,” he said.
It is 26 years since the first successful lung transplant operation was carried out in Toronto.
In Ireland 21 lung transplants have been carried out over the past 10 years. Currently there are 34 people listed at the Mater Hospital for lung transplantation, 13 of whom have cystic fibrosis.
The Freeman Hospital in Newcastle has also treated many Irish people. Last year five CF patients underwent double lung transplant operations there.
“These have made an amazing difference to the people concerned,” says Philip Watt, chief executive of the Cystic Fibrosis Association of Ireland, who also points to the high success rate of the National Heart-Lung Transplant Programme at the Mater hospital.
But according to the Cystic Fibrosis Registry, 7 per cent of those on the lung transplant waiting list with the disease die.
The Republic of Ireland has around 1,200 people suffering from cystic fibrosis. People in the North live an average eight years longer, a measure of diverging levels of care.
But it also points to the need for transplant co-ordinators in hospitals and the establishment of a single transplant authority.
“At present there is no authority to oversee the process of donations and retrieving organs. That is badly needed,” Watt says.
He adds that the completion of dedicated treatment unit in St Vincent’s Hospital by 2011 will have a big impact.
“That will make a huge difference because Vincent’s is the national centre for treatment. But we need those kinds of services being replicated throughout the country.”