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The National Heart Hospital the way I remember it

By Jamie Boyes

When I was a baby, I was diagnosed as having a congenital heart condition. Simply put, I suffered from Transposition of the Great Arteries though as many congenital heart patients will know, our `given' conditions are seldom as straightforward as they might appear! `Transposition', means that the main arteries come from the wrong sides of the heart: the aorta, which takes blood to the body, comes from the right ventricle in-stead of the left. This means that blue, deoxygenated blood (blood which has not taken up oxygen) is pumped around the body. The pulmonary artery, which takes blood to the lungs, comes from the left ventricle instead of the right. This means that red, oxygenated blood goes again to the lungs.

Even the exertion of crawling was impossible; so at the age of two I underwent a right-sided Blalock anastomosis. This operation increased the oxygen level of the blood going round my body and so helped me lead a more active life. As I reached my teens I learnt to hold my own as best I could, though I was unable to walk up a slight hill without having to take breathers, unable to run for a bus or take part in any normal athletic sport. I was 15 when I first met Dr. Jane Somerville at the National Heart Hospital. I'm not quite sure why she took me under her wing, but I'm very grateful that she did. I dreaded the various tests and consultations along with my second Blalock operation but slowly developed a great love/hate relationship with both the people and the building. In fact later on in my life, I remember thinking of it as a second home. It represented a family feeling and on the whole, there was a great deal of support.

The architecture was antiquated and much of the machinery would now be looked on as medieval, yet it was inhabited by a most extraordinary group of people (some are just a distant memory now) but they all had a dramatic effect on my life. `Outpatients' represented long waits in the corridors and cold rooms in which to change - or so it seemed. I used to gaze at pictures of wild animals, stuck up in the ECG room, while the technician spent an age trying to get the various-coloured leads to stay on my chest using suction. Then there were the cold rubberised bands that went round the ankles and wrists. I wasn't a great talker in that atmosphere so it was just something one put up with, though I hope I presented a pleasant countenance, if nothing else. X-ray was also cold, it always is, what with those metal plates and again the lack of clothing. There were other rooms, just as cold, which other `detainees' will probably have better memories of. Nonetheless, the nervous children with their nervous mothers (and' occasion-ally fathers) would sit for long times between tests.

There was a great art in trying to find a way of alleviating the boredom, the fear and the tension, in readiness for an interview with a consultant. Many of the cardiologists were doctors still in training, often from far way countries, and as a child it helped me to take my mind off normal hospital procedures to listen to their strange accents. Most appeared kind and smiled, which gave me courage - and so I felt secure. When a party of them, with others from `nearer home' gathered around my bed to prod, listen, and sound, it seemed quite normal. I'd empathise with them as they sought desperately not to make a stupid remark about my condition or over-look the obvious. Nowadays of course, the world is full of people from afar, who live next door, but then, it was not so usual and oh, how they suffered - sometimes in broken English.

Coping was the watchword in the children's ward as we confronted the fear of needles, the taste of medicine, the swallowing of tablets, the phobias of germs and the loss of school friends - while upstairs, in our own special room with a place to sit outside in the sun, were it to shine, a wondrous teacher kept us, our parents and the staff going mentally with hobbies, occupations and games. In the night, I might wake to hear a baby in a nearby cot crying while the nurses tried to lend it comfort. Sometimes, a day might bring new terror as we caught fragments of a conversation that might or might not have been about us and future operations. Yet all the time this caring community taught us to accept who we were as we struggled to learn how to cope with looking well, but being ill. Once, my father got permission to take me out to a friend's opening night at the theatre. Afterwards, he took me to the party that followed. Meanwhile, back in the children's ward, the night staff had changed shifts and phone calls began as to my whereabouts. When we returned, I told my dad I'd make my way to the ward without him. He drove off, leaving me on the steps. I waved, turned, pushed on the door and realised I was locked out. I could just make out a figure lying on the lobby sofa so I knocked, knocked, knocked. Eventually a bleary eyed porter let me in and I crept up to the ward. I tip toed to my bed, undressed, and tried to climb in under the sheets. Alas, the previous nursing shift had left me an apple pie bed - I was foiled. The night staff were not amused - they had to remake the bed without waking up the other children.

At 18, I developed a condition called secondary Polycythaemia. Because my oxygen levels were still reduced, the red cells in my blood would thicken, making it harder for my overworked heart to pump the liquid round my body. I began having the occasional venesection to thin the blood and so alleviate this problem. I would have a unit or more of blood taken out of one arm, while a 'replenishing' fluid was dripped in the other. I think it took a couple of hours to complete the process. With both arms attached to needles, I'd lie there and imagine I was being crucified in darker moments. One time, I remember trying to attract the attention of one of the busy nurses. I'd noticed the bag was extremely full but too late! It exploded all over the floor and my blood was everywhere. It always seemed such a waste to me that (as far as I know) they just chucked it away. I was told once that blood is very good for roses.

How often, when I rang up to ask a question, or report I wasn't feeling well did someone tell me that they were unable to find my notes. I would ask, "Have you checked The Children's Ward?" "Don't be silly" came the reply, "What would they be doing there?!" Ah yes, nothing was at it seemed. A year later, I was in for more tests for yet another Blalock when two of the nurses invited me and another patient out to dinner in China Town. We were terribly excited but we had to walk quite a way. It was bitterly cold and I wasn't sure I was going to make it before I collapsed. We did though, and the meal was fabulous. It felt so strange having dinner with these two `ordinary girls' who'd cared for us in uniform. Years and years later, after many routine visits back and forth to hospital, I was working as a theatre stage manager when I noticed I was having terrible trouble catching my breath. I was halfway through organising a new play which we'd finished casting, and I now found myself back in The National Heart. After a week, I went home with some new drugs and wrestled each night to find a position I could breathe in - but to no avail. The play did go on but I never saw it. Back in hospital, I watched them fight to find an answer as I slowly deteriorated.

ONE evening a group of us were sitting in a semicircle watching television with the nurses when the news came on. A photo was flashed up on the screen. It was a friend of mine; he'd been killed in a show jumping accident. I couldn't believe it. I went over to the public phone nearby and rang my mum. She'd already been on the phone to his mother. It was true. And all I could think was here am I, quite likely to die soon and he had been as fit as a fiddle. By now, I'd learned that a transplant was my only hope. One of the nurses had broached the subject with me, and with my permission, had organised for a young man who'd already undergone a transplant, to come and talk to me. He was very kind and told me a little of what he'd been through. I was getting worse and before long I left 'my' children's ward and moved up to the adult cardiac ward. It was very different without the friendship of the nurses I'd grown up with but they popped in now and then. I got to know the new staff but after some months, I'd become very ill in the ICU and time was running out. It was warm weather and the ward I was now in got terribly airless and hot. I'd reached the stage where my fluid intake was severely restricted, as my body was unable to cope with the build up. Because of this, I was put on a urinary catheter - very sore. In fact, I'd also got cystitis and during the night, my mum had to go to a nearby hospital for some potassium C, as the hospital had run out. I well remember the ice machine that was situated in the children's ward. I'd often used it in the past to add a bit of excitement to my orange juice. Now I found myself pleading for a sip of water - it was as if I was stuck in a desert. My greatest treat was to be allowed to suck a cube of ice. Sometimes, a tiny fluid soaked sponge would be rubbed around my gums.

Because my poor old heart was hardly working now, a balloon pump was put in my groin. I remember the sound of it 'clonking' in unison with my heartbeat. I was on a lot of morphine now and I used to have the strangest dreams and confess them to my dear night nurse. My communication level became non existent when I was put on a ventilator. I later found the 'letter cards' my father had made for me to try and spell out words by pointing. Apparently it was a bit of a failure as I was too shaky. One afternoon, one of my father's greatest friends, who had played the part of Jesus in the Franco Zeffirelli film Jesus of Nazareth, came to visit. It strikes me my dad needed to have someone important in his life share his son's near death before it occurred. Miraculously, not long after, a heart had been found and it looked as if I might be saved. The nurses were all very excited - on both counts. What was even stranger, my night nurse's friend (also a nurse) was caring for my eventual donor. But still there were complications. Professor Magdi Yacoub, who was supposed to perform the transplant, was out of the country. There was a suggestion, only he could perform the procedure. I was not in a very fit state to undergo the operation in any case. Luckily, Mr, Khaghani undertook the task, though I believe that at one point, he was on the phone to Magdi. As with any operation, it is those left waiting for the outcome who are most vulnerable during this passage of time.

Quite a few of my nurses observed from the viewing gallery above and when it seemed likely I might make it, they were all to be found in the pub across the road having a celebratory drink. What was difficult for all those who had worked so hard on my behalf, was that no sooner had the operation ended, I was whisked away to Harefield Hospital for aftercare. The ambulance was stuffed full of life support machines. It also contained my mother and an intensive care nurse (both gowned, masked and gloved) along with a doctor in old corduroy trousers and a sweater who wasn't. Mum isn't sure and I haven't established yet which machine it was, but during the journey, it crashed to the floor of the ambulance and they all scrabbled around trying to recover it. On arrival at Harefield Hospital, as I was lifted out, it all happened again. But this time the machine crashed to the ground and smashed to pieces, and what?ever I was attached to was left lying in a heap in the carpark as 'they' rushed me through the doors of ICU like an episode of ER. Sadly, everyone who had seen me deteriorate over the past months, could not now observe my long but successful recovery. As a result, National Heart nurses were forever ringing up to find out how I was getting on. Some of them, to my great delight, even came to visit. Over a month later, though I'd been home a couple of times, I kept being readmitted to Harefield because of 'rejection' and I was miserable. I'd heard The National Heart was having a Christmas party and I desperately wanted to go. I was told if my temperature stayed down for more than a day, my father could drive me up for an hour or so. Temperature taking at Harefield involved a plastic sheath over a stick sensor attached to a read out box. The thermometer had been superseded by something that went beep and relayed a digital read out as to whether or not you could attend a party. Luckily I could. When I got there, it was a quite extraordinary experience. All those people who'd kept me going and saved my life were hugging my very weak six stone body and asking me how I felt. Yet I could hardly speak (only whisper) as I'd lost my voice - it didn't come back till mid March. The devotion everybody there gave to me and my family was unforgettable. Some years ago, with a friend who'd nursed me during those dark nights, I went back to look at the National Heart. She and I had a drink at the pub where she'd celebrated my survival with the other nurses following the operation. We looked at the front of the hospital and felt very emotional. And now, though I have not visited the wards since 1988, I am pleased to think I was involved a little in the beginning of Professor Somerville's great triumph and that GUCHs will once more inhabit this fine building filled with memories both sad and joyful.

In writing this piece, I am very aware of the tremendous debt I owe to Harefield as well. In many ways both hospitals are/were unique and it saddens me to think we can let them go when they have accomplished so much and stand for such greatness.

Printed in GUCH News - Issue 31, December 2001

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