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Diane Saunders story
Life after death
A heart and lung transplant was meant to mark a new start for Diana Sanders. Instead she went into mourning for the person she used to be - and the donor she never knewTuesday, 25 July 2006 I'm sitting up, it's Tuesday morning. I'm surrounded by bleeping monitors, drip stands, machinery. My last memory is of Saturday night - lying on a cold anaesthetic table, a sharp pain in my wrist. A group of white-coated doctors appear at the end of the bed. "Well done, it's over now," one of them says. "It all went well. You've got a new heart and lungs." I should be overwhelmed with relief and gratitude - the waiting is over, my new life is just beginning. Instead, I struggle out of bed, a scar running from sternum to belly, wires and drains coming out of my chest, intravenous tubing springing from neck and arms, and beg the surgeons to put my old organs back.As a child, when asked what I wanted to be when I grew up, I said I just wanted to be normal. I was born with a congenital heart condition, corrected transposition of the great vessels. My aorta and pulmonary artery were connected the wrong way around, with a large hole between the left and right ventricles.
My heart pumped deoxygenated blood around my body, causing me to get breathless and blue, and, over time, I developed high blood pressure in my lungs - pulmonary hypertension - and Eisenmenger syndrome.In the 1950s, surgery for congenital heart conditions was in its infancy, and the cardiologist I saw as a child could offer very little treatment. From the age of six, I decided to hate him. He was the enemy, stopping me doing what I wanted, and any advice he gave, I would try the opposite. "Don't run" was an invitation to go tearing around the playing fields, collapsing in a blue, breathless heap. "Don't get over-tired", and I set off on a long bike ride with my friends, which put me in bed for a week.Even though I tried to be normal, exercise was pretty challenging - running around, cycling, even laughing would leave me gasping, lips and fingers turning blue. I trailed behind my friends in the playground, trying to keep up, and, banned from games, sat in the school dining-room doing my homework. The dinner lady made me tea with lots of milk. When she saw me, she'd proclaim, "Ooh, there's the weak one!".As the weak one, I was not expected to live to my teens. When I got to 20 I was not supposed to survive to my thirties. In my thirties I was given, if lucky, another 10 years. My hatred of my long-suffering cardiologist made me dig in my heels, determined to prove him wrong. Knowing life was likely to be short, I tried to do as much as possible.
I went to university, trained as a psychologist, partied, fell in and out of love, and spent a year in New Zealand. Meeting my husband, Mo, gave me the best reason for wanting to live, and with his encouragement, I pushed against my limits, wanting to fit it all in.But I could not prevent the inevitable deterioration. By my forties, I could hardly manage to walk even a short distance - stairs were impossible. Every day was a battle. Then came the day when everything changed. I struggled in to work, to teach a group of medical students. I stood up in front of them, gasping for breath, and could hardly speak. I was admitted to hospital and given the shocking news that my only option was a heart and lung transplant.Mo and I went to Papworth Hospital in Cambridgeshire to find out whether to go ahead. We were told that there were no guarantees - only scary statistics. It could take anything from a day to more than a year for suitable organs to become available, if they ever did. If I was called for a transplant, my chances of coming round after the operation were about 90 per cent, a 70 to 80 per cent chance of living for a year. The survival rates five years after a heart-lung transplant are around 50 per cent. After that it's anyone's guess.
The record stands at 20 years.Part of me just wanted to give up, to do what I always thought I would - die young. But now, in my forties, I wanted a chance, whatever it took. I had so much to live for. I loved my work, my friends, my family. I wasn't ready to die. In the autumn of 2001, I went on the list.We waited. I sat at home, needing oxygen 24 hours a day, and a lot of help from others. I could only go out for a couple of hours at a time, Mo pushing my wheelchair around the park until the portable oxygen cylinder ran out. We lived in limbo, jumping each time the phone rang.Just sometimes I allowed myself to dream. What would it be like to have a normal life? What would it be like to walk upstairs, walk down the road? What would it be like, the dark thoughts replied, if I am never called for a transplant? What if I become too ill, or get as far as the operation but never wake up? Please, don't let me die.I was not the one to die. My donor died instead.In the middle of the night in June 2002, I was rushed to Papworth in an ambulance, thinking, all the way, does this mean my new life, or my death? The nine-hour operation was followed by two weeks in hospital. My donor was a 31-year-old woman who had died suddenly of a brain haemorrhage.In the aftermath of the transplant, I had everything ahead of me - my new life, my new chance.
The operation had been a complete success - "a textbook case", the surgeon told me. At last, I'd be able to breathe, I'd be a normal colour, no longer blue. I could walk, get rid of the wheelchair. I could go back to work, laugh again. So why was I overwhelmed with a sense of regret and grief?I needed time to grieve for my poor defective heart and lungs which had worked so hard for me. As a student in Edinburgh, we struggled to the top of the Pentland Hills. We learnt to ballroom dance, doing the steps at half speed. I had made it to my forties and felt enormously grateful to my old heart and lungs for giving me so long. I needed to grieve for my old life, the familiar life of illness.
However much I'd tried to be normal, I was different. Would I still be me if I no longer had a heart condition? If I was normal, if I was no longer special, the weak one?I needed to grieve, too, for my donor and her family, but found it impossible to take on board at first - the fact that my life was so intimately connected with her death. I heard my new heart beat like a drum, unfamiliar.The 34 pills I took each day caused terrible nausea. The high doses of steroids caused despair, when I wondered if it had all been worth it - I was never meant to live this long, I said to myself, and at times I wished I hadn't survived. The grief for my donor hit me three months after the transplant, the first day I went to the gym and saw a young woman in her thirties running on the treadmill. My donor could have been like that, I thought. I'd been waiting so long for my life to start, and yet hers had ended. Thirty-one seemed a terrible age to die.But during the months after the operation, everything settled down. The side effects disappeared. My muscles slowly built up - I walked down the road, then round the block, then a mile, five miles. My new heart and lungs grew familiar, comfortable, and part of me.I know now that my reactions were not unique.
All the studies of transplant patients show that most of us have some sort of psychological reaction. Anxiety is the most common feeling, anxiety about the new life ahead, the medication, getting rid of the props, the oxygen, wheelchair and constant help - and a terrible fear that, once we have the chance of life, it may not last very long. Grief and guilt towards the donor, depression, denial, joy, mania - in fact, the full range of feelings.Now, four years later, I am still me and very much alive. I've reached 50 and can walk miles, cycle, run and breathe. I'm back at work as a psychologist in the NHS, and Mo and I are living our new life together.I still grieve, not for my old life, but for those who do not make it. And I'll always grieve for that young woman who died in June 2002. On holiday in Crete this year, Mo and I went for a walk in the mountains and came across a tiny chapel built into the cliffs. Inside, we lit a candle for my donor and her family. Because of her generosity, because she thought to register as an organ donor, and because her family, while devastated by her death, agreed that her organs could be used, I now have a life ahead of me.'Will I Still Be Me? A journey through a transplant' by Diana Sanders is published by Day Books, £8.99. www.dianasanders.net |
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