Content from: Alice Martineau's Article in the telegraph magazine.
Waiting For a New Life
Alice Martineau has cystic fibrosis. At the time of her birth, her life expectancy was 10 years. Alice is now 28. Even though her health has deteriorated to the point where she needs a heart, liver and lung transplant, she refuses to give up hope that she will live a normal life again. Here she tells her extraordinary story.
I am a young woman in my 20s, who possesses all the dreams, hopes and desires of any girl my age, and more. I like going out with friends, enjoy singing and dancing and would love, one day, to have a family of my own. I enjoy travelling, and this summer there is nothing I would like more than to go abroad and lie on a beach in the sun. But I cannot. I am waiting for a heart, lung and liver transplant.
And I live for tomorrow.
I suffer from cystic fibrosis, a genetic condition that was diagnosed at my birth. The minute I was born it was clear there was something not quite right. My parents heard the midwife say, 'there's something wrong with this baby.' My skin had taken on a bluish tinge and I was struggling to breathe. My poor parents were suddenly thrust into a terrifying and unfamiliar world. They had never even heard of cystic fibrosis (CF), let alone knew what it was. They had a new-born baby in their arms, yet they were told its life expectancy was roughly 10 years (medical advances mean that the average life expectancy for a cystic fibrosis sufferer is now mid-30s).
Four per cent of the British population carry the CF gene. If two carriers have a child then they have a one in four chance of giving birth to a child with CF. My older brother, Luke, was the lucky one - but not me.
Having CF leads to subtle changes in the body's chemistry. In the lungs, thick, sticky mucus obstructs the airways and forms a breeding ground for infection. Each infection leads to progressive lung damage. It is a similar story with the digestive system: thick secretions clog the pancreas. Not enough digestive enzymes are produced which leads to malnutrition and slowed growth and development. As the disease progresses, some patients may develop diabetes. (I did - I seem to suffer from everything) Some may develop problems in the liver, caused by cirrhosis. (I have that too. Not that I am bitter about it; it's just one of those things.)
Even now, I donít think of myself as being all that ill, but I suppose that I am. I am attached to a machine that gives oxygen to me day and night. The oxygen travels into my lungs via a transparent tube which rest delicately between my nostrils. When I first needed oxygen it horrified me; a year later, it has become my best friend. It accompanies me everywhere. It has a bath with me, it sits in the garden with me on a sunny day and as I sleep at night, it quietly keeps me breathing.
I only digest about two thirds of what I eat so I also have a tube in my stomach. Every night I attach this to a pump which feeds me extra calories to keep my nutrition stable. I have to have three lots of chest physiotherapy a day. This involves being thumped - or 'percussed' as the physiotherapists call it - on the chest to help bring up the mucus that fills my lungs. I also have a 14-day course of intravenous antibiotics once a month. This is boring and time-consuming because three or four times a day I have to mix a concoction of antibiotics and inject them slowly. I also have to swallow about 40 pills a day. Despite all this, I still tell myself I am not ill - but someone is trying very hard to tell me the opposite.
I wasn't always like this. Until I left school, I pretty much lived the normal life of any teenager. Everyone knew I had CF - I was always let off games, had to take pills whenever I ate and did physiotherapy every day - but I did not let it rule my life. So when I was 19, like most of my friends, I was determined to go away to university and ignore my illness. Before this, the longest I had been away on my own was for a couple of weeks with my boyfriend to Italy, the year before. Although I knew that the move would be a difficult one and might have far-reaching consequences for my health, I was prepared to take the risk.
I arrived at Warwick University to read English full of enthusiasm and excitement. It took my long-suffering mother just under two hours to unpack the car when we reached my halls of residence. Not only had I brought the usual plethora of student baggage - clothes, photographs, books - but I had all my medical equipment too. This included my nebuliser - a machine from which I inhale antibiotics and substances to make my breathing easier - and a fridge in which to keep some of my medication. As for my medication itself, well, that filled three huge cardboard boxes and I knew that would only be enough to last me for about a month. But it was the start of a different life, I was on the cusp of freedom and filled with anticipation.
I have always liked meeting new people. As I did not see myself as ill at this stage of my life, my CF insecurities had not taken a hold of me yet. I was confident of my ability to cope - probably a little too confident in retrospect. I was not unduly nervous, and had a room all to myself, with an adjacent bathroom. I felt completely under control.
The problems however, started immediately: my lecture rooms were a good seven-minute walk from halls and, although I refused to acknowledge it, in the first week I found myself struggling to breathe, making the distance on foot. How did people manage to look cool and sexy at the same time as walking, talking and carrying armfuls of books? I would, consistently, arrive at my destination looking like a dishevelled dog, sweaty and panting. Mmm, attractive. I developed a system whereby I left half an hour before an other student, enabling me to a) walk slower, resting at regular intervals and b) sit down and recover for a while once I had arrived at the lecture rooms. People must have thought I was a particularly keen learner, always waiting early for the tutor to appear, one of those swots you love to hate.
My mother suggested getting a bicycle, but I just thought it would create more problems. No, I was fine. I could manage. I had made a few friends but we were still on the early acquaintance level. Looking back now, my refusal to ask for their help reflected my inability to accept my illness. I was still very much in denial. And so I struggled on. The pace of student life was remorseless and the pressure to be on form both at work-time and playtime was getting to me. Fresher's week was a riot: copious amounts of drinking and flirting meant I got to know people pretty quickly, and was having a great time, but sadly my lungs were beginning to suffer. I had developed an infection; so, reluctantly, I had to concede that living away from home was a lot more difficult than I had anticipated. The infection meant it was time for a course of intravenous (IV) antibiotics. Time to go back home. I had been at Warwick only two weeks.
I was in and out of hospital for the next four months, and when I finally came out, I had to acknowledge the reality that life away from home was not going to work. I left Warwick and was immediately accepted by King's College, London. This meant that I could live at home while doing my degree. But I definitely feel I missed out on the whole university experience and made fewer friends because I was unable to cohabit with them. I worked on my own at home and was rarely able to attend lectures, but I came out with a good degree, so I can't complain too much.
In the first couple of years post-university, I do not remember being that unwell. I simply tired very easily, but I was never too tired to go to parties, or stay out late at night. I had many friends, some from childhood, some from school and some from the pub. I seemed to get a magic rush of adrenaline from somewhere when I wanted to have fun, where exactly it came from I do not know, but I am grateful for it's appearance.
In my gap year, I had some success being a model, and after university decided to pursue it in the vague hope I could make a career out of it. But anyone who knows anything about modelling will tell you it is the most unsuitable profession for someone who is not 100 per cent fighting fit. A junior model's life involves a lot of traipsing around London from one casting to another, most of which take place in a studio at the top of a building with no lift - not much fun if you have trouble breathing. I remember tottering down the street in the most ridiculous shoes, trying desperately hard to look sassy like the other girls . But after hauling myself up flights of stairs I would arrive red in the face and gasping for breath - not a good look.
This is when I started to develop little tricks to hide my exhaustion. One I used often was leaning on a wall to recover my breath while pretending to scour the A-Z for my next port of call. After the casting, I would wait for all the other models to leave so that I could get into my mother's car, which she had strategically parked around the corner, without anyone spotting me. These little acts have become my trademark; pretending to chat on my mobile while regaining my composure is the one I have used the most recently. Anything to prevent me looking vulnerable or in need of help and sympathy. I cannot bear that. Just as I now cannot bear people calling me brave. I'm not. I've just been dealt with a bad hand but I'm getting on with it the only way I know how. I have no option. And when I got out I hate people staring at me on my oxygen. That really irritates me. Just f*** off. I'm not a freak show. I'm exactly the same as you; I just have problems with my lungs.
Six months after abandoning my modelling I decided to take some singing lessons. Singing was something I had always enjoyed but I had assumed that having CF and breathing difficulties would somehow preclude me from taking it seriously. But to my amazement I actually had an extremely powerful voice. My choice of careers might seem odd to someone seeing me today, but five years ago, the damage to my lungs was limited, or at least it seemed that way. I began to write my own songs and it was not long before I was doing gigs in small venues around London. I have had some real success: I have sung with Blue, and Robbie Williams has shown an interest in my music and came to one of my gigs in the 606 jazz club in Chelsea. It is so exciting to be taken seriously for once in my life for something other than being ill. Also the element of escapism involved in the performing me as that, for the brief moment I am on stage, I can forget all the machines in my bedroom. I can make believe that I am fit and healthy. It is the thought of what I might be able to achieve after my transplant that will help me get through it... my name in lights... being up on stage... winning my first award... and the applause... I get quite carried away sometimes, and then I wake up.
It was a rainy, dull October day back in October 1998, three years after finishing at King's that brought me down with a really hard bump and I could no longer put CF to the back of my mind. I had a routine clinic appointment to see my doctor at the hospital. It was nothing that I had to dread; I was used to it. All it involved was a good deal of waiting around, being weighed, blowing into various machines and contraptions which looked as though they had come out of the space age, sometimes having the odd needle stuck into me and, in general, a lot of talking about myself, something I have never found too difficult and usually quite enjoy!
This day started no different from the others. I sat on the hard hospital chairs, trying not to stare at the other CF patients, but the inevitable questions and thoughts pervaded my mind. 'I wonder whether his lung function is as good as mine... My God, she's thin, thank God I don't look that ill.'
Illness is a funny thing; I guess it either brings you together with other people in the same predicament or it forces you to search desperately for disparity. I have always felt a certain amount of guilt about my refusal to recognise any affinity with other CF sufferers; I have never wanted to surround myself or go out of my way to be friends with them, maybe because in doing so I would be forced to accept that I was like them, ill and with no real future.
'Alice, please will you come in.' I rose nervously from my seat, and followed my doctor into his room. 'Hello, and how are you today?'
'Not too bad.' My standard response. The truth was I was not feeling terribly well, but then I never did nowadays.
'Fill me in on the last few weeks.' As I began to talk, he shuffled with my notes on his desk, clearly looking for something that he then found. I watched the concentration on his face, trying to read his every expression. It was always very important for me to make a good impression on him; I'm not entirely sure why, but ever since I started going to see him when I was 16, I craved his approval. This distinguished man in a white coat was my God: what he said had to happen.
He had my future in his hands.
'Breathe in. Breathe out. In. Out.' The stethoscope was cold on my chest. I sat up rather stiffly as he tapped my back and listened again. 'Now could you please lie down on the bed and undo your trousers while I feel your stomach.' The slightly uncomfortable prodding was followed by his ever-brusque comment, 'you can put your clothes back on now and come and sit down,' which always left me feeling a bit awkward. I walked back over to my seat, took a deep breath and sat down. I felt I was on trial; the tension was palpable, 'Well, Alice, there are a few crackles in your chest, and looking at your measurements over the last year, there is a basic decline in your lung function. How do you feel generally?' I hated this question, because I so wanted to pretend that I was fine, for my own sake as much as for his.
'All I can say with any degree of certainty is that I'm on IVs more than I used to be, which I suppose means that I must generally be a bit worse. But, apart from that, I think I'm OK.' I used to have the course of intravenous antibiotics for chest infections about once every three months, but the time between courses had now decreased significantly.
'Well I think you should start considering transplantation again.'
The word transplant came like a bolt out of the blue. It was a subject I had successfully placed in the back of my mind all my life. In doing so, its voice had been muffled so that it had become a barely audible whisper, but with my doctor mentioning its name, its full life-giving but also life-threatening potential was realised once more.
'At least think about it. With you, Alice, we never know what's going to happen. Youíre not an easy person to predict. I think you've definitely got two more years, but if you were to ask me whether you had five more years, I couldn't honestly answer.'
Had I heard him correctly? Was he giving me a 'best before' date? I felt I was no more than a product in a supermarket, with a shelf life of five years. I couldn't believe it. Did he know who he was talking to, how much fight I had in me? I wasn't going to let this disease, which had taken up so much of my life, defeat me yet. I was only 26; there was so much I still wanted and needed to do.
Facing up to your own mortality is never an easy thing; people might assume that if you've lived with a life-threatening illness all your life, then you must be prepared to reach a stage where death is inevitable, but nothing, however much you expect it, can prepare you for being told you are going to die.
It is a good thing that I had this obsession with keeping my doctor's respect, because it made me automatically switch into stiff-upper-lip mode. Instead of sharing my fears with him, I shrugged them off. I did not really confront what he had just said to me. I wondered if I would later. Anything but jeopardise his image of me as brave, someone who could cope with whatever life threw at me. My breakdown into a weeping heap of self-pity would be neither attractive nor ingratiating. But the words 'transplant' and 'dead in five years' circled around in my head as I left his room and walked down the steps of the Royal Brompton Hospital, out into the dripping darkness. I felt suffocated from all sides. Fulham Road was awash with rush-hour traffic and I suddenly found myself staring at people with resentment, thinking, 'God, you are lucky! Do you have any idea what I have just been told?' But anyway, why should they care? They didn't know me. They had their own worries in their own lives. Why on earth would my problems make an impact on them? And I suddenly felt almost intolerably lonely. I opened my umbrella and slowly walked to my car.
The next year and a half were a case of me putting off the inevitable. I kept telling myself that I was fine and that the idea of me needing a transplant was preposterous; but then there came a point where I could not ignore the situation any longer. I had gone into hospital for a couple of days to start another course of intravenous antibiotics. My chest infections had been getting increasingly worse and my doctor thought that a short stay in hospital might just get on top of them. I hated hospital and, once imprisoned, usually spent most of my energies trying to negotiate my release. This time was no different. I had perfected my plaintive voice and always worked out my arguments so well beforehand, that it was rare that my requests were not granted. I tried: 'But I sleep better at home and I don't eat in here.' But my consultant, who had seen me at work for years, was prepared for my arguments. My flirtation tactics had no power over him. 'No, I think it would be good for you to stay in.'
So I surrendered and decided that maybe a few days under the supervision of the medical team would do me good. It was always important for me to feel that I had made the decision to stay in, that I was somehow in control.
The following day I woke up, had my morning dose of antibiotics and was just beginning to eat my breakfast when I felt a 'bubbling' in my chest. It was a feeling I had experienced many times before, associated with bleeding. True to form, I soon felt a welling up of blood inside my lungs and grabbed a plastic container, which was fortunately sitting by my bed. The next 20 minutes was a bit of a blur. I just remember sitting with my head over a bowl while the nurses rushed around, replacing them as quickly as I was filling them. It seemed as if the bleeding was never going to stop. I was fighting for breath, desperate to get some air into my lungs, but the blood was gushing up, preventing me from doing so. I was panicking. Calm down. Calm down. It will stop. It always does You've just got to get through this. Fifteen minutes and eight bowls of blood later, I lay exhausted on my bed, an oxygen mask attached to my face. I had coughed up two litres of blood.
I had experienced alarmingly large bleeds before, but none quite on this scale. (I have since had an even bigger one.) I suppose that everyone, including myself, was rather shocked at the speed and amount that my lungs had managed to expel: so shocked that the subject of transplant was broached again and a decision finally made. I would go on the national waiting-list for a transplant operation straight away. and for the first time, I actually wanted to. I realised that this was becoming my only option. My health was definitely becoming worse and it was time to inject a modicum of hope into my life. I was 27.
The heart, lung and liver transplant for which I am waiting has been performed only five times in this country, and the success rate has been very low. I try to remain positive, however, that my operation will be different. I think about all the wonderful things I will be able to do, focusing on the 'will be able' rather than the 'might be able' to try and boost my morale during my inevitable dark moments. I imagine moving out of my basement flat in my parents' house and into a flat of my own, going to the gym every day, doing dance classes, going shopping without becoming exhausted after five minutes, just being able to lie flat on my back without being breathless - wow, how amazing that would be; something I have not been able to do for years.
As soon as I joined the waiting-list I was given a pager which I have to carry with me at all times. If it bleeps I have approximately two hours to get to the hospital. This means I am unable to travel too far from home and I cannot really plan anything. In the early days of being on the list, every time the phone rang I thought it was the hospital with a perfect set of organs. But 14 months later, I have successfully placed it to the back of my mind. Coming to terms with the fact I could be called at any time day or night is not easy. The call could come tomorrow, or in five years' time or it could never come. But I don't think about that. I have to get on with my life today, and the first duty to myself is to conserve my existing health so that when the transplant does arrive my body is in as good a state as it can possibly be. I spend my days watching television, writing songs, going out to recording studios when I feel well enough and, aside from that, I pretty much keep BT in business.
There is no doubt that I would not be as able to cope with my circumstances were it not for the incredible support and care I receive from my family and friends. What they must go through I often think is more difficult than my suffering. My life is in limbo, but so is theirs. I have a very close relationship with my family, in particular with my mother. She is the one person who understands what I go through and how I am feeling on a day-to-day basis without me having to utter a word. I also have a particularly close bond with my boyfriend, Al, who I have been with for three years. He has to deal with issues and circumstances that one would not expect in the average relationship. For instances there are times when I am very unwell and unable to get out of bed which obviously excludes us from having any joint social life. I also tend to have alarming episodes of coughing up a lot of blood which is very frightening. He copes with this and other things with great fortitude and patience.
I have been told that the operation could last up to 15 hours, a terrifying idea when I allow myself to think about it. Sometimes I torture myself with the operation itself and my mind goes into gruesome overload imagining all the things that could go wrong. But other times my approach is more pragmatic and philosophical. I simply think how incredibly blessed I would be to get that call and be given a second chance at life, considering all the unfavourable statistics. There are about 6,000 people with life-threatening conditions like myself in serious need of a transplant. Yet more than half of these people die before they have a chance of going through the operation, while scores, if not hundreds, of pristine organs are buried or cremated every month.
The problem is that the take-up of donor cards is still relatively small. Not enough people carry them, and the system is in desperate need of reform, I believe that the only people who should carry cards are those who do not wish to donate organs; such a scheme would make hundreds more transplants possible every year, yet still respect the rights of the individual.
Sometimes, I don't think my transplant will ever happen, other days I don't want it to happen, but most of the time I just exist in the knowledge that it could happen at any given moment. It is something I now desperately need. And although I am still hoping, I am not expecting. I just surrender my life to the powers that be and pray that my guardian angel will step in at the right moment.