On February 17, 2005, I learnt that I had a year to live. Maybe two if I’m lucky. The doctor who explained my predicament was a lovely, gentle man, who had a look of embarrassment on his face, as though he felt in some way to blame for my chronic deterioration.

Actually, the doctor never said it in quite those terms. I was too afraid to ask: “When do you think I will die?” and opted for the slightly softer: “When will I hit serious problems?” But as he was seeing me to assess me for a double lung transplant, which is a last-ditch attempt to save someone who has had their lungs ravaged by disease, we knew what I meant. New lungs aren’t easy to come by; I’m still waiting.

I had cystic fibrosis diagnosed at birth. As I was able to start treatment immediately, my childhood was fairly healthy, interrupted only by the occasional hospital admission and course of intravenous antibiotics. I had a busy social life, took regular swimming classes, played the flute and piano, sang in the choir and did lots of drama.

I don’t actually remember when I was told that I had the disorder. There was no big, dramatic, sit-down speech: I just always knew. I accepted that I had to have physiotherapy twice a day, use a nebuliser (a device for inhaling drugs) and take 50 tablets daily, just as most people accept that they have to clean their teeth before they leave the house. My parents answered each question as I asked it, and I wasn’t allowed to feel sorry for myself or to think of myself as ill or different.

Dying was not something I ever let myself think about. When I was 10, I found a magazine in my parents’ bedroom which contained an article about cystic fibrosis. One of the lines that jumped out at me was: “Most people with the condition die before their twentieth birthday.” It was the first time I had realised that my condition would shorten my life. My dad came up and found me in tears. He sat me down and explained that the media likes to sensationalise things and that the magazine was out of date, anyway. He said that the average life expectancy was 80-odd, but not everybody reaches that age and some people just drop down dead, so I shouldn’t take too much notice of statistics.

I realised that the only way to live was to take it one day at a time. Otherwise, there’s no point doing anything. So I worked hard at school, got good grades in my GCSEs and A-levels, and went to university to study drama. Any problems that my condition caused could be surmounted: work could be caught up on, tests and essays done from my hospital bed.

Cystic fibrosis is a progressive disease and my health began to deteriorate from the age of 16. My lungs collapsed twice last year and I spent several weeks in hospital. I also learnt that I had joined an exclusive club of young women sufferers who experience a sudden and rapid decline. It was then that my doctors started to talk about assessing me for a lung transplant and I knew that I was facing the inevitable.

And so, last March, I joined the transplant waiting list and began to live a surreal kind of half-life. At first I felt completely numb. The line between life and death should be huge; one should have some sense of life slipping away, but that isn’t the case. I still feel fine, which is a ridiculous thing to say given that I need oxygen 24 hours a day and have a lung function of just 19 per cent. But I feel the same as I did. It’s impossible to accept, rationally, that without a transplant I have less than a year left of life.

We’ve all seen Hollywood movies and fantasised about what it’s like to be given a year to live; what we’ll do, what we’ll say. My reality is not like that. I to and fro, endlessly, between two paths of thought: do I live as if every day is my last and make the most of what time I have left? Or do I assume that I’m going to receive the transplant and get on with life as “normal”; in other words, live in semi-hibernation until that date? At first, I had the impulse to rush out and do everything I have ever wanted to do. Instinctively, I started contacting people I had lost touch with, writing letters to loved ones, and planning parties. I even wondered if I should rush to marry my long-term boyfriend Adam. But then the dull throb of rationality made me remember that after a transplant my life could go on for many years, and the above impulses suddenly seemed silly and melodramatic.

When you’re on a transplant waiting list you have to have a bag packed at all times and you can never be further than two hours from the hospital. You need to make sure you’re fit enough to receive new lungs should they become available. Living my life as if I won’t get the transplant could jinx my chances of receiving one.

But could postponing my life be just as foolish? There are about 250 people on the lung transplant waiting list but 50 per cent of us are sure to die before we receive a new pair of lungs. Organ donors are scarce and, as a result, the average wait for a pair of lungs is 18 months. Even if I make it to my transplant, the operation is dangerous. So if I cocoon myself until then, do I risk wasting my final months? I’d like a crystal ball; to know my fate and be able to plan my time accordingly. I still have ambitions. I’d like to be a TV presenter or to work with children, and I’m planning to fight, to prove the doctors wrong. There’s a Robbie Williams song with the line, “I’m not scared of dying, I just don’t want to”, that sums it up for me. The thought of dying makes me very, very sad because I love my life.

Emily Thackray, 21, lives in Ewell, Surrey. She has just graduated from Bristol University with a degree in drama. She runs a website for people with cystic fibrosis: www.pwcf.net. She was talking to Hilary Freeman

THE FACTS

UK Transplant, www.uktransplant.org.uk; organ donor line: 0845 6060400.