Fragile Lives Read online

  We unpicked Stefan’s skin stitches, cut through the sternal wires and carefully inserted the retractor amid the many pipes. As with all sternal re-entries there was blood clot and fibrin sticking to the heart and tubes, so we peeled all of this off and sucked it away, then washed the heart and pericardium with warm saline solution. Everything needs to be clean – a tidy house for its new occupant, not a rubbish tip – and we had to find space for the cardiopulmonary bypass tubing. Once this was attached, we could switch off the Berlin Heart, cut through the tubes close to the heart and remove them from the surgical field.

  But we weren’t about to do that without the donor heart being in the room. There could still be a disaster en route – a road-traffic accident, a puncture, anything. Or someone might drop the heart on the theatre floor. This had happened before, with Christiaan Barnard in Cape Town. His brother Marius dropped it while taking it from the donor in one operating theatre to its recipient next door. Oops!

  At 9.15 am the heart arrived in its box, surrounded by bags of ice. We set it down on its own table and unpacked it carefully one bag after another, finally allowing it to rest in a stainless steel dish. It sat there in its salt solution at 4°C, cold and floppy, like a sheep’s heart on the butcher’s slab. But we knew how to revive it, and had full confidence that it would start again and do its job. So I told Brian to switch off the Berlin Heart and go onto cardiopulmonary bypass.

  Stefan’s own heart emptied out for the very last time, then flopped down completely useless in the back of the pericardium. Marc started to trim the donor heart while I chopped through the four plastic cannulas. Katsumata pulled them out of his body and threw them away. It was now time to chop out Stefan’s sad heart ready for the new one. Out it came, leaving the empty pericardium – a curious sight. No heart. It must have been really scary when Barnard did it for the first time, like peering beneath the bonnet of a car and finding no engine.

  The donor heart was implanted in a strict sequence, and it was essential to align it correctly without distortion. This may sound obvious, but donor hearts are slippery, wet and not easy to hold in position.

  It helps to have a clear, three-dimensional vision of the finished product. I’m lucky in this respect as I inherited co-dominant cerebral hemispheres, meaning that I use both sides of my brain’s motor cortex. I can operate with either hand. I’m a right-handed writer but a left-handed batsman, and I preferentially kick a ball with my left foot. Co-dominance helps with many things but especially surgery, being more important than the ability to study and pass exams.

  But a heart transplant is quite simple. Take deep, full-thickness bites of the donor and recipient atrial tissue and keep stitching very carefully so there are no leaks. With the atria and aorta sewn together the aortic crossclamp can be released. This marks the end of the ‘ischemic’ period – the critical time that affects survival, during which the heart doesn’t have coronary blood flow after removal from the donor. We know that the hearts that do best come from young donors with a short ischemic time and blood group compatibility. But that doesn’t help much. The patients have to take what they can get – they’re lucky to receive a heart at all. That’s why even ‘marginal’ donors are accepted these days: the over-sixties, smokers, even those with some types of cancer.

  But it was all looking good for Stefan. Blood coursed through the coronary arteries and brought the heart muscle back to life, turned it from flaccid and pale brown to almost purple, stiffened and fibrillating. As it began the recovery process we stitched the last join between the severed pulmonary arteries, then made further efforts to remove air. Air in the brain wouldn’t help him.

  At Marc’s suggestion we rested Stefan’s magnificent new heart for an hour on the bypass machine. This precious organ might easily have gone into the bin with the diseased lungs. Its continuing life is one of the wonders of modern medicine. It defibrillated spontaneously and started to eject blood, gathering strength with time, then separated easily from the bypass machine.

  There were now two main risks. First was the rejection of the donor heart, should the immunosuppression prove inadequate. To balance this was the second, that excessive immunosuppression might lead to serious, even lethal, infection. So when Stefan recovered he needed to go to the experts at the transplant centre at Great Ormond Street. We’d done our bit by keeping him alive. Marc would let us know as soon as a bed became available.

  Archer and the paediatric intensive care unit helped us to take care of Stefan over the next week, then he was transferred to London. We kept in touch and followed his progress. After a few transient rejection episodes that soon got better, he enjoyed a virtually uncomplicated recovery from what was an almost impossibly difficult starting point. We’re still following him nearly twenty years later. He now has his own little family and is reaping the benefits of an ideal donor heart transplanted quickly, thanks to my friends in Berlin and Great Ormond Street.

  Those few balmy weeks in summer were epic pioneering days. We’d achieved the UK’s first bridge to recovery in viral myocarditis, then the first bridge to transplant in a child. These were dire emergencies undertaken on the hoof and worked through in the dead of night with my dedicated team of overseas colleagues. Great Ormond Street adopted the Berlin Heart for their heart transplant programme, initially with charitable funds. Then it became the only approved system to support babies and children with severe heart failure in the United States. It still is. Needless to say, we never got to use it again in Oxford. Children with heart failure either reached Great Ormond Street in time or they died. Julie and Stefan emptied out my own research funds. But what price can you place on two young lives?

  10

  life on a battery

  We will now discuss in a little more detail the struggle for existence.

  Charles Darwin, On the Origin of Species

  It was a warm summer’s morning in the first week of June at the turn of the millennium. At 11 am there was a tentative, almost apologetic knock on my office door. And there stood Peter, his large frame filling the doorway. He leaned on a stick, swaying unsteadily, and he was sweating profusely, his head bowed, his lips and nose blue, panting for breath. Out of pride he refused to be pushed through the door in his wheelchair. Only weeks before he’d received the last rites, but such details still mattered to this man. Desperately trying to disguise his distress he slowly lifted his head and stared straight ahead through the doorway. He couldn’t see me yet but – like Stefan – he reminded me of a concentration camp victim, a dead man walking, all hope abandoned.

  My secretary Dee was visibly shaken by Peter’s distress, so I broke the silence.

  ‘You must be Peter. Please come in and sit down.’

  Hidden behind the stooped frame was Peter’s foster son, who parked the wheelchair in the corridor. I tried to make them comfortable with a little joke.

  ‘Did you pay for that parking space? This is the NHS, you know!’

  They didn’t get it.

  Peter shuffled slowly through to my room, and began staring at my certificates, awards and other surgical paraphernalia on the walls. He was checking me out. A religious man, he worked as a counsellor for the terminally ill with AIDS. But life had come full circle and he faced death. His existence had become that of an intelligent mind attached to a body rendered useless by heart failure. He was expecting the end to come soon, the sooner the better. I gestured to the armchair. He set the stick aside and sat down with a grunt.

  Now I was checking him out. He was breathless on the slightest exertion, his belly bulged with an engorged liver and fluid, and I could see that his legs were swollen and purple. He wore oversized sandals, with socks stretched over massively swollen feet, and there were stained dressings on leg ulcers that the socks failed to cover. I didn’t need to examine him. This was gross end-stage heart failure. I was amazed that he’d made the effort to leave home as he could die at any moment.

  Some months before Peter’s visit a colleague and I
had written an open letter to members of the British Cardiac Society (as it was then) to announce that we were ready to test a revolutionary new type of artificial heart – the Jarvik 2000. We needed to recruit terminally ill heart-failure patients who were not eligible for cardiac transplantation. Peter fitted the bill perfectly.

  I’d already read his medical notes from the cardiologist. Peter had first been diagnosed in March 1995 with dilated cardiomyopathy that had been triggered by a viral illness affecting his heart muscle. He’d had a bout of influenza, which turned to myocarditis, but initially recovered. Or so it seemed. Now he had an enlarged, flabby heart, an irregular heart rhythm and a leaking mitral valve. Such patients usually die within two years of diagnosis, and Peter was well beyond this. He’d been admitted to hospital on many occasions, gasping for breath and coughing up fluid, and without rapid treatment with diuretic drugs this ‘water on the lungs’ would be his terminal event.

  On each occasion his drug treatment had been escalated, with modest yet short-lived relief. Now he’d reached maximal levels of all useful drugs and his single kidney was failing. Months earlier his cardiologist had asked the surgeons at a London hospital whether they’d repair his leaking mitral valve, raising Peter’s hopes. That was until his outpatient visit, when the surgeon was thoroughly dismissive, saying it was quite impossible, being far too late and far too risky.

  The hospital correspondence described him as grossly fluid overloaded, breathless and exhausted on minimal exertion, unable to lie flat and only able to sleep propped up on pillows or sitting in an armchair. This was exactly as I remembered my poor grandfather.

  Back in my office Peter was still sweating, as he tried to regain enough breath to speak. I remember thinking that this man would be lucky to survive a haircut and was amazed they were really expecting me to operate on him. But that’s what mechanical hearts are for. This was precisely the intolerable existence they were meant to improve, the symptoms they were designed to relieve and the life they aimed to prolong. By now Dee was less flustered and had brought tea. Peter thanked her. Now we could talk.

  I thanked Peter and his son for making the huge effort to come, then asked him the circumstances of his referral. He’d been working as a psychologist at London’s Middlesex Hospital and ironically was writing a book called Healthy Dying. Just a few days earlier, he’d struggled to a meeting with his co-author, Dr Robert George, a palliative medicine consultant at University College Hospital.

  Peter wanted to say a last goodbye but was in so much discomfort that Rob went to find a cardiologist to see if anything could be done. While waiting for his colleague to finish with a patient he glanced at the cardiologists’ notice board and saw a cutting about the heart pump project in Oxford. He recognised the name of the surgeon, Steve Westaby, as he’d known me as a junior doctor. Both he and the cardiologist then wondered whether I could help Peter.

  Coming directly to the point, I suggested that we could both help each other. I’d just been given the opportunity to do something that had never been done before, something that had the potential to help hundreds of thousands of patients worldwide if it worked. I bluntly told him that I needed a guinea pig and that he’d be perfect.

  I took the Jarvik 2000 out of a desk drawer to show them. The titanium turbine was the size of my thumb or a C size battery, and I explained that the pump would fit inside his own failing heart, implanted at what used to be the pointed apex. His left ventricle was now so large that there was plenty of room, so we’d sew a restraining cuff onto the muscle that would hold the pump in place, then punch a hole through the heart wall and slide the pump in. The high-speed turbine would empty his struggling heart through the graft and into his aorta, the major blood vessel to his body.

  I showed him how the torpedo-shaped impeller spun within the tube. It went at an unbelievably fast rate – between 10,000 and 12,000 rpm – pumping five litres or more of blood per minute, as much as a normal heart but with continuous flow. It didn’t fill and empty to eject blood as the normal heart did, as there would be no pulse. The only potential problem was that the right side of his heart would have to cope with the boosted circulation, but if the right ventricle coped well enough this manmade pump could be as good as a transplant. If it didn’t, he’d die.

  Peter winced at the word ‘transplant’. No one should underestimate the profound psychological trauma of being turned down for a transplant, a patient’s last hope when life appears to be approaching its end. He was bitter, as he’d been through the selection process twice. The first time he’d been told that he wasn’t sick enough for a heart transplant. The second, when he was fifty-eight, that he was too sick.

  I tried to put this into context for him. Assessment for a heart transplant is a brutal process. To describe transplantation as the ‘gold-standard’ treatment for heart failure is equivalent to claiming that a lottery win is the best way to make money. First of all, heart transplantation is ageist. In the 1990s patients older than sixty were not even considered. There were around 12,000 severe heart failure patients younger than sixty-five in the UK but fewer than 150 transplants. Clearly it was the transplant physician’s responsibility to select patients who’d accrue most benefit, and there were very few of these.

  What I wanted to do was to help patients in Peter’s position – the desperately ill who’d never get the transplant opportunity, and those of all ages who were abandoned to ‘palliative care’, narcotic drugs blunting the misery of their unpleasant, lingering death. Peter had refused these drugs. He informed me that he was all too familiar with death, having comforted more than a hundred patients during the last days of their life, ‘telling them the things they need to do, can do, the stages it will take, things like that’. It wasn’t the time to compare body counts. I’d already dispatched more than three times that number to the afterlife.

  Now rested, he had the measure of me and was more animated, an extraordinary character beginning to shine through his morbid preamble. His smile penetrated through his grey facies and purple nose, and I warmed to the man. So traumatised was he by repeated rejection that he had absolutely no expectation from our meeting. Quite to the contrary. He expected to be turned away.

  I had serious doubts whether he’d survive a general anaesthetic, but if we took him on no one could claim that we’d picked an easy patient or one who didn’t need the pump. Both my own hospital’s ethics committee and the Medical Devices Agency had requested independent verification that the first patient to be given the Jarvik 2000 should be terminally ill, with a very short life expectancy, and Peter wouldn’t fail on either of these criteria. So the decision rested with me. Impulsively I told him that it would be a great privilege if he’d allow us to help him and that if he wanted the first pump it was his. There followed a look of astonishment that quickly turned into a broad grin. This was his lottery win.

  He asked about the odds. I said around 50/50, but knew that to be optimistic. Like many patients his main worry was that he’d be left brain damaged and worse off than to start with. I reassured him that if the operation didn’t succeed he’d definitely die. A strange way to reassure someone, perhaps, but he was quite taken by the concept that failure spelt death. Life at present was unbearable, but as he was a Catholic, like most in his position he wouldn’t contemplate suicide for his family’s sake. Surgery was an option for euthanasia without the moral debate.

  I asked about his wife. Why had she not come with him? Diane was a teacher and couldn’t come away at short notice. Together they’d founded the National Association for the Childless, written the book Coping with Childlessness and had looked after eleven foster children. As a younger man he’d played rugby, something we had in common. I felt that he was a good person and would make the best out of his extra life.

  I showed him the equipment and asked whether he could cope with life on a battery. He’d have to carry the controller and batteries – fitted into a shoulder bag – at all times. There was an alarm that sounded whe
n the batteries were low or disconnected, and he’d need to change them twice a day. Overnight, he’d plug into the electricity mains supply at home. Very futuristic.

  Now the next surprise. Dr Jarvik and I had worked out a revolutionary new method to bring electrical power into the body. The big issue with electrical power lines that emerged through the abdominal wall was their propensity for infection, as constant movement of the cable through fat and skin allowed bacteria to enter, and sometimes even the pump became infected. Seventy per cent of patients were eventually troubled by this and many needed further surgery. Instead we planned to screw a metal plug into Peter’s skull. The scalp skin is virtually fat-free and has a generous blood supply. The plug would be rigidly fixed into bone, and we believed that this combination would minimise the risk of power line infection.

  So Peter would have an electric plug in his head carrying electricity to the pump via a cable passing through his neck and chest. Magic! I’d be the real Dr Frankenstein.

  Peter laughed. His mood was changing. I explained that he’d have a large, painful incision around the left side of his chest to implant the pump. Not so funny. There would be additional small incisions in his neck and scalp to fix the electrical system. Peter asked whether this had ever been done before. It hadn’t.

  ‘So, is it going to work?’ he asked.

  ‘Yes. I’ve done it in sheep.’

  He laughed again, then enquired whether he’d hear or feel the pump in his heart.

  ‘Well, the sheep never complained.’

  It occurred to me that I should warn him that he wouldn’t have a pulse. The impeller – the moving part of the pump, which spins at high speed – would simply push blood through his body continuously, like water through a pipe and very different from the pulsatile ejection of the biological heart. So his nurses and doctors would never feel a pulse or be able to measure his blood pressure? Yes. Life would be different but arguably preferable to the inevitable alternative. He was the pioneer in this respect.