Chapter 6 : The Surgeon

“you know how you hear of young people just dropping dead? Well this is why!”

One day a letter arrived in the post from the hospital, I was getting used to these by now but this one was unlike any I’d had before.

As I read through the opening paragraph the words ‘bicuspid aortic valve with severely dilated left ventricle and regurgitation’ jump out the page at me. I carried on reading to see that a meeting with the surgeon would be ‘soon’. What did that mean? It didn’t make sense to me, what were they talking about and what did ‘soon’ mean?

The letter went on to mention that the size of my heart was a major factor in the decision to operate as it was now larger than what they considered to be a normal safe size.

I didn’t know how to come to terms with this information, I still didn’t really know what was going on. It was now obvious none of the tests had brought back good results and it became clear that it was a major problem.

The next day another letter arrived. I sat down and opened the envelope as if I was going through the same routine, although I felt nervous. What would this letter reveal after the shock of yesterday’s news. I started reading and found that a date was set to meet the surgeon to discuss options. It appeared ‘soon’ was in fact ‘very soon’.

I made my way to St. Bart’s Hospital in central London. It was an old building with big stone walls at its flanks and a courtyard in the centre adding to the grand feeling of the place. It was like an old relic of the British Empire standing tall and mighty in a fast moving and developing city.

Barts
Barts

I had been here once for an examination and as I had done so many times before at other hospitals I navigated through endless corridors to find the level, and then the room, that I need.

The waiting room had an old musky smell and feel to it. The decor didn’t seem to have changed since the sixties. The walls were a dull, pale brown. The seats were large with faded pink plastic covers and there were two large tall windows with a view straight out onto a wall. The air was thick with sad and bad news.

I settled in a seat hoping I wouldn’t be there for long and played on my phone. The room felt like the embodiment of depression, and I felt the occasional glance from the other people waiting. They were old and seemed inquisitive about why I was there, sitting on my own in the corner.

I didn’t wait long before I was called into a room where I was introduced to Dr Li and Nurse Emma.

The room was small and narrow with a bed on one side. It was in stark contrast to the grand exterior of the building. Dr Li was directly opposite me and Emma to my left as I sat down.

Dr Li introduced himself as the surgeon and quickly went into the results from all the tests, saying they needed to operate and remove my aortic valve as its was not working due to a defect, so open heart surgery needed to take place. He came across as a firm decisive man with a strong presence in the room.

He went on to briefly explain that I needed to make a decision on the type of operation they would perform. The valve could be replaced with either a mechanical titanium valve or a tissue valve. If I chose the mechanical valve I would need to be on a drug called Warfarin for the rest of my life and the valve would ‘outlast’ me, whereas if I decided on the tissue valve it was not certain how long it would last and so they would need to do the whole procedure again, facing the same decision further down the line.

The difference with a second open heart surgery operation is that I would be less likely to make it through due to the trauma. This all rolled off his tongue like he was reciting it for the thousandth time and it was all perfectly normal.

He then explained that Emma would be my one-on-one twenty-hour nurse throughout the process. I could call her at any time to ask questions. She would see me a few more times for various tests and help prepare for the operation. Despite the dominance of Dr Li in the room with his authoritarian knowledge, Emma added her own subtle presence which I felt strongly. She was a soft and gentle soul who sat patiently in the corner.

“Oh. Right OK…” was all that I managed to say.

He asked if I had any questions. In a confused and nervous state I said, “have you done this many times before?”

In a quick unfaltering way he chuckled to himself and told me he has been doing it for many years.

“There is lots of information about me and the procedures online. It would be best to check it all out and then come to a decision.” Pausing for a moment he continued; “we want to get you in in eight weeks’ time.”

This final sentence felt like he was putting an end to it and the matter had been dealt with. It was time to move on, ‘pack your bags and get on with it lad’.

The first thought I had was of my parents who I knew where arriving back from a holiday on that date so I naively asked, “can we move it?”

He gave me a surprised look. I could sense his disbelief at requesting the date be put back.

“How about the following week?” he said.

“Ok thanks,” and it was done, the date was set.

I asked if there is anything I should be doing or not doing. By now it seemed he felt the need to impress the seriousness of what was going on and calmly said, “you know how you hear of young people just dropping dead? Well this is why.” A sudden weight of air slammed down on me and it became very real.

I realised then I should stop riding my bike and do everything I could to help ease my heart on any level.

The meeting took no longer than fifteen minutes. It was quick and to the point which I appreciated, although shaken up by it. At last I had someone who was being upfront with me and had laid it bare in simple language; no covering up with medical terms or test results.

In a nutshell he explained, “your heart has had enough. It’s over stressed and we need to operate on you ASAP otherwise it will stop working, and that could be at any moment.”

I thanked them for their time and got up to leave in a haze. I walked down the corridor like I was gliding smoothly along, a few inches above the ground, sailing along on an air of uncertainty. People were moving around me and I was in the same space, although I felt like a distant shadow.

I unlocked my bike from the hospital railings and gently rode home.

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Chapter 9 : My Parents

“The shock on their faces was evident and I knew it would take time to digest.”

So far only my girlfriend and sister knew what had been going on. I had six weeks to decide on the operation, tell everyone and to prepare for an unknown outcome. What would life be like after the operation? Did I know what life I wanted after the operation? Would I even make it to the operation? Where did I begin with all this?

I knew the choice I would make would ultimately determine the life I would then go on to live and I wondered greatly what that would be.

Each procedure had a different set of answers and many other questions which is why it was such a hard decision to contemplate. It was also impossible for me to know the answers as, quite simply, I hadn’t had the operation yet. Everything was based on (assuming I survived) how life would be after the operation.

The first conundrum I faced was how to tell my parents.

I was on the train heading home to Devon from London and feeling lonesome, almost spacial. I kept thinking that people get older and you accept that things happen. They go into hospital and your parents come to you with life events ‘such and such isn’t well and will need an operation’ or ‘ such and such is struggling to walk so now needs constant care’. This was the other way round. How was I going to say to them that my heart was in really bad shape, that I had to make a decision on what operation I had, I may not survive and ultimately may not even make it to the operation date?

I didn’t go home much so my parents were inquisitive about the surprise visit when I got there. We started talking about the normal how things are and then my mother wanting to get to the real reason I was home said “so what’s going on?”

I broke down in tears as the emotion hit me. I curled up, leaning forward in the armchair and tried to speak but through the tears I spluttered a few words with short sharp breaths. The realisation of telling them had now taken over. They rushed to my side hugging me and offering comfort as loving parents. With a few steady breaths and a moment’s silence I composed myself and started to explain.

The shock on their faces was evident and I knew it would take time to digest.

It was an emotional day full of silence, contemplation and utter despondency. My parents were doing their best to remain strong and keep that brave parent face on when it was clear they were more fragile than I was. I could sense there were questions they wanted to ask but didn’t know how. I managed to get a bit out of Dad when Mum wasn’t there, although as soon as she was back in the room his Yorkshire front and closed Britishness came back over him.

We spent the weekend going over it all as I explained both procedures and the decision I had to make over the valve. I felt relieved to have told them and could now move onto the next thing. I was one stage further along in the preparation I thought.

Chapter 13 : Ghosts

“I felt as though I wasn’t talking to a person; I was talking to a screen, a shell of someone I once knew”

Back in London and with only a few weeks to go until the operation I was feeling incredibly drained both physically and emotionally. I felt weaker and weaker and I was permanently operating at fifty percent.

I quite literally needed a shoulder to lean on and very often a simple hug.

It was a strange period where it felt like I was surrounded by ghosts – everyone was just a blank screen to me. It was clear that people were putting on a front with me and were hiding how they truly felt about everything that was happening.  They were not allowing their real thoughts, fears and anxieties to come to the surface for me to see.  I could only presume they thought they had to put on a brave face; keeping up the appearance of being strong in order to be there for me.  However, nothing could have been further from the truth of what I actually needed and put even more of a barrier between us.

I couldn’t get anything out of anyone which made me feel more alone. I felt as though I wasn’t talking to a person; I was talking to a screen, a shell of someone I once knew – like they were ghosts.

I kept thinking that I wished they would just scream if they needed to. Punch, cry, yell, say, do whatever they wanted. I needed feelings and emotions. I wanted them to tell me how they felt not present this false shadow.  I wanted them to show me they were human, show me who they were so we could do this together by helping each other. I wanted them to be honest and break down if they needed to. I could handle that; I could handle them being real. 

Ghosts

I concluded I would have to work this one out on my own.

There was only so much advice anyone could have given me. It was having the choice of operations that made it so hard. A friend of mine commented: “you wouldn’t wish that choice on your worst enemy; it’s such a decision I can’t even begin to imagine.”

I wasn’t in a situation where they could say ‘this is the case and this is what we’re going to do about it and you’ll get better’. I was given a choice and I had to work out what was going to be right for me.

It’s an almost unfathomable decision until you are given it; it meant deciding what sort of life I may have after the operation, depending of course on how the operation went.  I had to base my answer on unknown factors. What was life going to be like and what life did I want?

I arranged to see people as and when I could, generally during the day as I was too wiped out in the afternoon and evening.  I was and still am grateful for the loving friends I had around me who would come to see me. It became quite strange when we were saying goodbye as it could potentially have been for the last time and I had this feeling that I was preparing them for what was coming.

Chapter 17 : 11/12/13

“….she knew what was coming; the silent horror was written in front of me.”

 

I was partially awake when the nurse came over at  five am to wake me.  Feeling a little slow, I sat up and began to come round.

She came back a few moments later and took me to the nearest shower room where I sat on a plastic fold down chair that was stuck to the wall and she started to shave my chest; I didn’t have a hairy chest but you have to be squeaky clean for surgery. Once the chest has been ‘opened up’ in surgery any loose hairs pose a threat to getting lodged under the skin and causing infection.

As the nurse focused on my chest I could tell she was nervous, she didn’t look me in the eye once. Perhaps it was shaving a thirty-year-old’s chest instead of an eighty-year-old’s for a change. It was clear this was not a part of her job she liked and that she knew what was coming; the silent horror was written in front of me.

I was now in a hospital gown and went back to lie on my bed. I checked my bag and belongings were all together, ready in a bag to be collected, and placed the iPod and speaker at the end of the bed by my feet. I did this three times to be certain everything was ready.

I could hear my phone ringing and saw it was Tiana.

“Hey, morning,” I said. 

In a hesitant, soft and distant voice she asked: “are you OK, what’s happening?”

“Not much,” I said, and I explained that I had been prepped and was now ready for surgery.

The conversation had more silence than words and lasted for thirty seconds at the most. I was tired, spaced out and didn’t want to drag it out. I had nothing further to say. Words seemed pointless at this stage. I was here and it was happening.

“Ok, speak later.” I said, finishing the call and going back to methodically checking that I had everything I needed.  I was sure that I did but I checked again anyway as a form of distraction.  I then sat on the edge of the bed looking out of the window at the wall, doing my best to meditate and keep a sense of stillness present.

The curtain was still drawn around my bed, and a nurse came over to open it and ask me a few more questions. The lights were soft and dim, adding a sense of solemnity to the mood, as if they could feel the atmosphere and had adjusted themselves accordingly.

The other gentlemen were also up by now and I gently greeted each of them good morning.

It wasn’t long before a young doctor dressed in surgery gear came bouncing over.  Putting both his hands on the end of the bed and looking up at me he said: “Ready!” – it wasn’t so much a question as a statement, and the effervescent tone made me chuckle to myself as he and another nurse started to turn my bed and wheel me out as I lay there. 

I passed my roommates and one by one they each nodded and said “good luck”, “all the best”, “see you later Guy”.  There was a wonderful sense of camaraderie in the air, a mutual understanding of what each other was going through, which was comforting.

We went along the corridor and into a small and narrow lift which felt akin to the type you find in an old warehouse.  I pointed out the iPod and speaker at the end of the bed to the young doctor and as I did so I noticed that he had a full sleeve tattoo, which I started to discuss with him. 

I remember a curious look on his face as he smiled as if to say ‘you have no idea what’s about to happen and I’ll entertain your small talk.’

We got out of the lift and into the anesthetist’s room, which was very brightly lit in contrast to the low lighting of the ward and the old rickety lift.  There were three people ready to welcome me; the lady I met previously who was my anesthetist, an older man and a younger man – neither of whom I knew.  They introduced themselves and asked if I would mind if the younger man administered the drugs as he was a student in training.

“Yeah ok,” I said, and the student grinned at me and started to play with my left arm.

Meanwhile, I was talking with the older man and scanning the room, having a good look at the surroundings.  There were notes stuck to the wall and various medical instruments on the shelves.

I carried on chatting to the doctor and it became clear that the student was struggling.

There were a few glances between the doctors as if to say ‘‘he should be out by now, what’s going on?’’ which gave it away. The anesthetist hurriedly came over, pushing the young student aside and taking over. I noticed another door to my left which would take me to the operating theatre. I carried on chatting with the older doctor and then, mid sentence, I was out.