In comparison with most of western Europe, Switzerland is not a good country for patients in need of an organ transplant.This content was published on June 27, 2008 - 12:03
Not everyone is as lucky as 24-year-old Sara Calzavara. Three years ago she received a new lung, and with it a new life.
Fifty people on the waiting list died last year, despite a law to improve the situation that came into force on July 1, 2007. With only 10.8 donors per million, Switzerland falls way behind Spain (33.8) and France (23.2).
Today no one would guess Sara's secret. She looks just like any other young woman of the same age, and she does the same kind of things – going to work, going out with friends, going off on holiday.
But unlike most of her contemporaries, she grew up having to face the fact that her life was unlikely to be long. At the age of five she was diagnosed with cystic fibrosis, and warned that she might not live beyond 20.
Even so, during the first nine years of school she was able to take part in most of the same activities as her friends, including gym lessons and riding. Taking pills and inhaling to loosen the excess mucus was just part of her daily routine.
But then her health took a turn for the worse. She had to spend time in hospital, and undergo intravenous treatment.
She was forced to abandon her studies at the riding school in Bern and embarked instead on an apprenticeship in technical draughtsmanship. She completed the first year, but after that could only work 50 per cent, since every day she was obliged to spend hours inhaling and having physiotherapy.
No plan B
"I couldn't breathe, couldn't walk, always felt exhausted, and didn't want to eat," she told swissinfo. An operation on her lung in the autumn of 2003 only made things worse. She needed almost continuous infusions of antibiotics and was on oxygen. Something had to happen.
She resisted the idea of a lung transplant for a long time, on the grounds that it would mean the end of the road. "The only thing after that would be death. There's no plan B. If it fails, that's it."
"I had to get used to the idea and come to terms with it," she explained. That meant a period of discussion and explanation at the Zurich University hospital, which gradually prepared her psychologically for the transplant.
"They made it clear to me that I was in the terminal stage of my illness. I've always been glad to be alive, I've fought for 20 years, and didn't want to give up now."
It was important to catch her at the right time, not forgetting the period she would have to spend on the waiting list, which can be up to two years. Calzavara was given a pager so that she could be contacted at any time of day or night.
From that point on her condition worsened. She bought a car, because going anywhere on foot totally exhausted her.
After a three-month absence she returned to her studies at the beginning of April 2005. The very same day she had a call from Zürich: "We've got a lung for you."
All the fears she had had about a transplant evaporated. "I realised that I was going to go on living. It was like a burst of adrenalin." Family, friends and colleagues, who for years had watched her suffering, were overjoyed.
Calzavara was flown by helicopter to the hospital in Zurich. That very same evening she received a new lung. She stayed in hospital for four and a half weeks, learning how to cope with her new situation and the foreign body inside her.
Since the transplant she has had to take medication several times a day. The most important are immuno-suppressants, designed to prevent her body rejecting the new organ. And every six weeks she has to go for a check-up in Zurich to make sure that the lung is functioning properly.
"I don't want to know who the donor was," says Calzavara. "If I could put a face to the organ I would feel bad about it even though the person died. Because I have benefitted from their death."
Calzavara doesn't know how many years of life she has ahead of her. Perhaps ten, perhaps more or even less. But at the moment she feels good. "I've never been as strong in my whole life as I am now," she says. She has lived so long in the shadow of death that now she is simply trying to forget and to live.
During the week she works part time as a technical draftswoman in St Gallen, in eastern Switzerland, where she comes from. She usually spends the weekend in Bern, where she has a room and has made new friends. When she is there she doesn't have to keeping thinking about her illness, and she herself isn't always the focus of attention.
She has plunged herself into her new life, and even booked a six-week trip to New Zealand.
"I have some catching up to do, and I need to soak up the beautiful moments. And if one day things take a turn for the worse, at least I'll have these experiences to look back on."
swissinfo, based on an article in German by Gaby Ochsenbein in St Gallen
2007 transplant law
The transplant law of July 1, 2007 established a centralised system for organ transplants.
Under the new law, the waiting list is also handled centrally. Allocation is done by computer, taking into account the urgency of the case, the benefit to the patient, and the length of time on the waiting list.
It is forbidden to buy or sell organs.
Organs can only been removed if the donor has agreed, for example by carrying a donor card. Otherwise next-of-kin must give permission.
The Federal Health Office estimates that 15% of the population carry a card.
At the end of 2007 there were 870 names on the waiting list for organs.
In 2007, 437 organs were transplanted in Switzerland.
Cystic fibrosis (CF)
CF is the commonest hereditary disease in Europe. Some 40 children are born with it in Switzerland every year.
It affects the mucus glands of the lungs and other organs, and leads to progressive disability.
The bronchial tubes narrow, the sufferer is subject to chronic coughing, and less oxygen is taken into the lungs.
It affects the pancreas, making it difficult to digest food. At an advanced stage it may result in diabetes, liver disease and other problems.
The prognosis for sufferers has improved in recent years, with more than 60 per cent of sufferers living to at least the age of 19.
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