Fragile Lives Read online

  One day two nurses were changing the bottom sheet on her bed. As they rolled her from side to side Anna’s recurrently dislocating right kneecap displaced, although no one apart from her recognised the fact. Leaving it dislocated was agonisingly painful for her but there was no way she could let anyone know. Eventually an observant junior doctor spotted the strange asymmetry of her knees and put the patella back in place. No anaesthetic. Nothing.

  Des and father David visited every evening after work, hoping to see signs of improvement. I passed by her intensive care bed several times each day as it lay on the route between my office and the operating theatre. My immediate thought was that she had severe and irrecoverable brain injury. But I’m no brain doctor.

  Anna’s uncle visited on the evening of Monday 5 September and, like everyone, sat there trying to talk to her. The tape that kept her eyelids down to prevent the surface of her eyes from drying out had been removed. Suddenly Anna opened her eyes and her uncle jumped up in surprise, shouting, ‘She’s awake, she’s awake, Anna’s awake!’ Not only that. She could follow the movement of a finger up and down with her eyes. This was the first indication of consciousness since her stroke a week before.

  Des and David had just left the hospital, having been there most of the day. When they heard the news they rushed back but by then Anna had fallen asleep. With the realisation that Anna was not brain dead it was reasonable to let her try to breathe for herself. Over the next twenty-four hours we managed to remove the breathing tube from Anna’s throat, a great relief for her, and making physiotherapy and bed changes easier.

  A few days later Anna was awake for most of the day, breathing well, with a stable pulse and blood pressure. There was the usual pressure on intensive care beds and, against the family’s wishes and my own grave reservations, she was transferred to a single room on the ward. With less frequent chest physiotherapy she soon developed pneumonia, which needed treatment with a combination of antibiotics. Still prostrate and unable to cough, this developed into a life-threatening situation, a high, swinging temperature, profuse sweating to the point of dehydration and uncontrollable bouts of shivering making her life intolerable.

  The pneumonia was getting worse not better. Then by chance Des saw the letters ‘DNR’ scrawled across the cover of the brown folder containing her medical notes – Do Not Resuscitate, written on the grounds that her projected quality of life would be unacceptably poor and without any permission from the family. It gave them all a clear message that the medical staff had given up.

  What it meant specifically was that Anna wouldn’t be put back on the ventilator if her chest infection proved overwhelming. David said about this, ‘I think it was put on her records when she was moved out of the intensive care unit. I’m not certain of the ethics but felt they should have discussed it with us.’ Of course they bloody well should have. Vets don’t let pets die without discussing the issues with their owners, and it would have been reasonable – to put it mildly – to mention it to her family. Scary.

  Now that Anna was in a single room on the ward she was solely my responsibility, not the intensive care doctors’. I called a case conference with my own surgical assistants, the ward nurses and the physiotherapists, then I brought in Des and David for a frank and open discussion. We’d come so far with Anna – she was awake and, although the prospects of neurological improvement were limited, the family wanted her to have the best chance.

  What did ‘Do Not Resuscitate’ actually mean? With the myxoma gone she had a normal young heart that was never going to stop, and no one was going to have to pound on her chest or zap her with the defibrillator. What she needed was physiotherapy and antibiotics for a while, together with loving care to make her feel human again. In no way was she just an inconvenient object in a bed who needed a bit more effort than usual. The pep talk served its purpose, the team pulling together and curing her of the pneumonia.

  Gradually Anna remained fully alert for longer periods and was soon sat out in a chair. Her breathing improved and she learned to communicate by blinking, making yes or no responses to questions. Well-meaning nurses worked out a system for others to communicate with her through winks and blinks, but unhelpfully they taped the instruction sheet onto a locker too far away for Anna to see. And no one thought to put her glasses on. In time she regained some ability to control her head movements, then she learned to use a specially devised ‘speech board’ to interact with visitors. The process was slow but began to give her a means of expressing her well-preserved intellect. In time she began to tell us her own story, the things that she remembered from the other side of the fence.

  I remember waking up in what I assume was the middle of the night. It was very dark. There was that intermittent beep all the time and what looked like lots of televisions lit up. I now know they were the heart monitors in intensive care. It felt like my neck was resting in a bowl. Someone was pouring lovely warm water over my hair and massaging my whole scalp. Whoever it was they were washing my hair! It felt absolutely wonderful.

  When they had finished, the bowl was taken away and I tried to hold my head up. I wanted to see where I was. My neck seemed to have lost all its strength and the back of my head felt as if it had been filled with concrete. I couldn’t speak and don’t remember being able to cry at all. I was frightened. There were curtain rails in a square above me and a painted ceiling. Unable to move or lift my head, I just lay flat on my back looking directly upwards. No sign of life in my vision but plenty of voices. One voice I recognised. A woman. My line manager at the bank. I was worried she had come to check up on me. To see why I was not at work. One person mentioned a funeral the next week. I thought it was mine. My uncle realised and reassured me. My brain worked fine. Where was my body?

  Often lots of people in white coats gathered around the bed. Always talking about me, not to me. Things I’d never heard of before. Then they just left. I wanted to ask them stuff. Where was I? Why was I here? How dare they talk as if I wasn’t there? I was indignant but I couldn’t get it across. Much of my confused state and dreadful thoughts could have been prevented if people talked to me. No one explained what had happened to me.

  One day a medical registrar called Imad came to see her from the Rivermead Rehabilitation Centre. He was kind and actually spoke to Anna. He asked if she would like to have the feeding tube through her nose replaced by one inserted directly into her stomach.

  ‘I hated the tube in my nose,’ Anna recalled. ‘I opened my eyes wide and smiled to indicate “Yes”. That was the first time I remember anyone trying to involve me in my own care.’

  Imad was there to assess Anna for a rehabilitation programme when she was fit enough to leave hospital. This was still three months away, as she needed to be much stronger and able to swallow before she could leave. Progress was slow but steady. She had a few more chest infections and further courses of antibiotics. At least they removed the Do Not Resuscitate order from the front of her notes. Anna was very much alive – and wished to stay that way. By the end of January she was sufficiently strong to move her head and blink, and was in a fit state to move on. Although she remained quadriplegic, being able to breathe without a ventilator was a great blessing.

  In all, it took almost three years before Anna could move back – in the Easter of 1997 – to her modified home with Des and start rebuilding her life. She remained physically dependent but mentally alert. On weekdays Des went off to work early, then two helpers would arrive. They got Anna out of bed, after which one stayed with her for the morning. At lunchtime a different carer came until around 7 pm. Then two others would arrive to help put her to bed. A rigid routine. She got out and about to the supermarket and local park in a sophisticated electric wheelchair directed by movements of her head. She liked to be treated as a normal person and have people talk to her.

  From a scripted box of tricks mounted on the wheelchair Anna could open and close the front door, draw the curtains and operate the television. The box was prog
rammed to operate with an infra-red controller. A nod pushed against a lever on the left side of her head and this triggered a cursor that stepped down a list of commands. When it reached the chosen instruction she nodded on the lever again to select it.

  Anna also had a computer room overlooking her garden. In it a receiver monitored her head movements via a white reflective dot fixed to the bridge of her glasses. This enabled her to direct a mouse around the computer screen, and with specially created software she could write emails and keep in contact with her friends. Like predictive texting on mobile phones, her computer constantly second guessed what she intended to write.

  Apart from loss of mobility, Anna professed that little had changed for her since the stroke. As a religious woman she accepted her situation and made the best of it. The local radio station ran a campaign to buy her an adapted van that could carry her wheelchair. Her father christened the blue Vauxhall Combo the ‘Annamobile’ after the similar Popemobile. And her main worry in life? That she might grow another myxoma that I couldn’t remove from her heart. She was content in her own body and didn’t want life to be cut short by another stroke.

  Dr Forfar kept her under surveillance every six months with an echocardiogram. The first myxoma had been radically excised and was unlikely to return. But I was aware of genetically based familial myxomas and was convinced that Anna’s mother had died from one. Patients with the familial myxoma gene can develop further tumours at different sites and I just hoped that this wouldn’t happen.

  But in August 1998 I received a call from Dr Forfar, who had Anna and Des with him in the office. There was devastating news from her latest scan – the myxoma had recurred. He told me that Anna was very frightened and asked when I could take it out.

  I assured him that if he could bring her into a cardiology bed that afternoon I’d do it the next day. It was a reoperation, so we’d need to have blood available. Reoperations are always more complex, and in this case the sac around the heart would be obliterated by inflammatory adhesions from the first procedure. As I’d learned years ago at the Brompton, the heart can be stuck to the back of the breastbone. But I’d done hundreds of reoperations since that first débâcle and it wouldn’t be a problem.

  Anna was sitting in her wheelchair looking petrified when I saw her on the ward. Des was crestfallen and her father David was on his way. We’d meet in the operating theatre the following morning, and I said that everything would be fine but I needed to go and change my operating list. In reality, the emotional black hole was about to pull me down and I needed to escape.

  Des came to the anaesthetic room with her. He stayed to keep her calm until she was unconscious. The first time I met Anna she was already paralysed but still had muscular arms and legs. Now, up on the operating table, I saw that these had markedly wasted away by three years of immobility. I listened with a stethoscope before painting the chest. I was convinced I could hear this one and, as I suspected, the origin of the myxoma was at a different site, towards what we call the left atrial appendage. There was no stalk – it simply had a broad base, which I chopped out, and then I sewed the atrial wall back together.

  I looked carefully around the rest of the heart to make sure there were no other tumours lurking in the recesses. Nothing. We came off the bypass machine easily, closed up again and took Anna back to intensive care. We knew that she’d wake up this time, so she had her communication mechanisms ready. The physiotherapists were on standby. It was all much easier after the dress rehearsal. Once again her family and friends rallied round, and I hoped for her sake that it would be the last time I saw her.

  It wasn’t. The third time Anna was thirty-two, and seven years had passed since the first operation. In April 2001 her follow-up scan showed another huge myxoma in the left atrium, again in a different position – directly above the mitral valve. This tumour was more solid, and plopped in and out of the valve orifice. A dangerous situation. Large myxomas can block the valve altogether and cause sudden death. Again Anna and the family were in a state of distress, having watched the echocardiogram unfurl on the screen.

  I took her straight back into hospital and to the operating theatre the following day. The third time through the sternum is always tricky. Again I entered the heart via the right atrium and opened the remains of the septum. The tumour lay directly in front of me, originating next to the mitral valve and partly from the atrial septum. I set about lifting it from the left atrium with an ordinary kitchen spoon, a useful implement for tissue that has the consistency of jelly. I’d never seen or heard of a patient needing surgery for more than three heart tumours, and soon we’d run out of places on her little heart to insert the bypass cannulas.

  Anna bounced, or rather crept, back again. Her spirit and the support of Des and David were extraordinary. She suffered the inevitable chest infection but the physiotherapists brought her through. We were assiduous about pain control and used the same communication mechanisms as before. This was the benefit of a consistent ward nursing team in those days.

  She spent three more weeks in hospital before going home. We learned that she’d been struggling with depression, but it would be inconceivable for this not to be the case – massive stroke and multiple heart operations, then the realisation that this must have been the cause of her mother’s premature death, and worst of all the persistent anxiety about the tumour recurring. It had come back twice at different sites, so would it happen again, and was a fourth operation indeed technically feasible? Could it be done safely? We all hoped that it wouldn’t come to that.

  Now Des couldn’t bring himself to attend the follow-up appointments. The strain of sitting there watching the echo images on the screen was just too much. Instead he went to the church to pray. Anna was painfully thin, so her echo pictures came out as clear as day, and on each follow-up she lay there, desperate to see empty chambers, atria that were getting smaller with each operation.

  In August 2002, just sixteen months after the last procedure, came another nasty surprise. Dr Forfar called to show me the monster – the largest tumour so far. I didn’t believe that a new myxoma could have grown to that size within months. I said nothing, but wondered whether this one might be malignant. I’d operated on a young woman with that scenario before. The first myxoma was benign, the second time it was a highly malignant myxosarcoma. We didn’t want that for Anna. I brought her back into hospital for an urgent fourth operation.

  To obtain written consent for an operation we’re obliged to explain the risks. No one could claim that the risks of death during a fourth heart operation could be any less than 20 per cent. Equally there were significant risks of a further stroke as there was a real chance that bits of myxoma would break off and visit the brain. But if we didn’t operate the tumour would continue to grow rapidly and obstruct the heart. The bigger it became, the greater the danger of embolism. We were stuck between the Devil and the deep blue sea, and I figured that we’d be better off taking on the Devil. Anna and the family would have divine help in that struggle. Plus she couldn’t swim.

  On the day of Anna’s surgery the church held a vigil for her. As always Des and David brought her round to theatre. I stayed in the theatre coffee room. For them it was an emotionally draining experience, just like when parents bring a young child to the anaesthetic room and have to leave it with strangers. Des had doubts that she would get through this one.

  This was the biggest and most aggressive myxoma so far, practically filling the whole left atrium. I did a radical excision, then took a long, hard look at this battle-scarred cavity. Was there anything I could do to stop further growths? I decided to take the electrocautery and kill the cells of the whole inner lining, the layer that was genetically programmed to terminate Anna’s life. I fried as much as I could see, the smoke rising like when stubble’s burnt in a corn field. I’d decided upon a scorched-earth policy as I simply didn’t want Anna to succumb to this curse.

  As we obliterated the cell lining I had an extraordin
ary and unexpected stroke of luck. I’d pushed open the mitral valve to look around the left ventricle and spotted a baby myxoma on one of the muscles of the mitral valve, too small to be seen even on the best echo but destined to grow large had we missed it. Out came the bastard and into the pot it went with the rest. Everything had to be analysed by the pathologist.

  The heart continued to look good in normal rhythm and frying the inside of the left atrium had provoked no adverse effects. I watched the rest of the operation over the drapes – my team was first class, so I wasn’t needed to finish off.

  When the sternum was wired together I went to call Des, wanting to put the family out of their misery as soon as was reasonable. There had been very little bleeding, so the whole procedure had been quicker than anticipated and I suspected that he might still be in the church. When I got through I told him the battle was over. Once again Anna was safe within the bounds of her ability to bounce back from the trauma of it all.

  But I was concerned that she might give up if she dwelt upon the recurrence issues. Anna needed an overdose of positive thinking, a massive morale boost to get her through the next few weeks and carry her past the pain, the fear and the uncertainty. So I asked Des to bring God back to the hospital with him.

  Anna recovered slowly, this time without a serious chest infection. Everyone rallied round once more to see her through – medical staff, nurses, physios, the chaplains, and especially her own friends and family – all with a gargantuan dose of positive thinking. By now she was a well-known character in the hospital and the community, and everyone was willing her better.

  Once again she went home, only to face the inevitable outpatient’s appointments and the much-dreaded echocardiograms. Months passed without incident. Then years. Two of them, at least.

  Then came the grey, wet November afternoon the day before Guy Fawkes Night in 2004, and Anna’s routine appointment with her cardiologist. She was with her dad, who helped her onto the couch for the echo. Gel was applied to her bony little chest to improve contact with the probe and both of their adrenaline levels rose in anticipation. But within seconds came that familiar sinking feeling as they saw yet another lump floating around in the left atrium like a goldfish in a jam jar. So much for my scorched-earth policy.