Chapter 3 : The Appointment

“Goodness, has anyone ever told you you have a heart murmur?”

 

I arrived and sat at the doctor’s surgery feeling quite bemused and a little uncertain. Last week I had competed in the most intense environment I had ever been in and now I was sat here, feeling good but anxious. I told myself it was nothing and it was a good idea to have come so that the doctor could clear it from my mind.

I was called through for my appointment; I didn’t have a regular doctor as I did my best to avoid those places and I had always been fit and healthy.  She was in her mid to late forties with dark brown hair parted in the middle cut to shoulder length and wearing a black suit which drew together her hair and brown eyes behind large circular glasses.

She gestured that I should sit down on the chair next to her desk and said, “so how can I help?”.

I filled her in on what had happened over the last few months and why I was here, going into detail about the training and how I had been feeling; the exhaustion and those odd moments which had lead to being sat talking with her.

“Oh right” she said and asked me to lift up my shirt as she got out her stethoscope, placing it on my chest.  Within a split second she jolted back in her chair and her eyes broadened. She recomposed herself and focused intently.

“Goodness, has anyone ever told you you have a heart murmur?”

“No!” came my reply in a sharp, shocked laughable tone.

“Oh” she said, and I noticed a look of shock, terror and sympathy all hidden behind her professional appearance.

“OK, well what we’ll do is send you off to have some tests to see what’s happening. Give you an MOT as it were”.

I sat there in silence for a moment. It felt like I was being sucked into a void,  someone had turned the lights down and the room closed in on me.  Had I just been punched in the face during a sparring session?  I quickly came to and wearily said “Ohh K”.

“The nurse will send out a referral letter with an appointment for a follow up” she said whilst smiling at me as if to offer some reassurance. This smile was clearly hiding something.

There wasn’t really any more to discuss and I didn’t know what to say.  So I got up, thanked her for her time and left.  I was in and out in under ten minutes and it felt like the world was spinning.  Not knowing what to make of it all I walked home in a complete daze.

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Chapter 4 : The MOT

“there was an uneasy expression on her face as she said, “I am not at liberty to say right now”.

 

One day a letter arrived in the post saying I had an appointment at the cardiology department at Homerton Hospital and I had to allow up to two hours.

I arrived at the hospital and started to navigate my way through the endless corridors. A colour coded sign was used for each department and to my curious fascination the colour red was for cardiology. I found the receptionist and as I handed over the letter she gestured that I sit on the nearby chairs and wait to be called.

I made a point of being on time, in fact a few minutes early so I could get out of there as quickly as possible. I sat down and did my best to clear any thoughts. It was a hectic environment of impatient people rushing around, complaining they needed this or that person and asking why they hadn’t been seen yet. The first thing I noticed was that everyone was a lot older than me, double my age at least and I felt out of place.

Thankfully it wasn’t long before I was called forward.

“How are you today sir?” the nurse enquired.

“Very well thank you and how are you?”

“Oh yes I’m doing well thank you,” she said with a broad smile.

She took me through to sit on a chair behind a curtain where they weighed me, took my blood pressure and heart rate.

“Thank you, now please take a seat through there and wait for your name to be called,” she said and went on her way.

I moved to another waiting area and shortly after sitting down my name was called; it was a relief not having to wait long.

A different nurse then explained that I was going to have an Echo (Echocardiogram) and I needed to lie there and take off my top.

Next to me was a machine with lots of wires and I got the sense I was about to be plugged in. Lots of sticky plaster-like patches were positioned on various parts of my body, each with a connecting wire. I was then asked to lie on my side facing the wall so my back was to the nurse.

“There’s going to be a cold feeling from the gel,” she said as an instrument was placed on my chest which she started to move slowly around in small circular motions, pausing occasionally.

She has one hand on the instrument on my chest and the other on the machine moving a ball in the palm of her hand, which I presumed was similar to a mouse and used to focus on certain areas on the screen. 

Strange sounds were coming from the machine behind me, like rain drops in a bucket only more metallic and in a regular rhythm. Drop, drop. Various bleeps with a constant beat and a whooshing sound. I glanced over my shoulder to see the specialist staring hard at the screen, clicking away with the ‘mouse ball’. I couldn’t tell what any of it was although I gathered that on the screen was an image of my heart and the sounds were of it beating.

She took the instrument away and I then started to turn over when she said, “just a moment I need some more gel, we’re not finished yet”.

The small handheld instrument was being pivoted in all directions on or under my rib cage to get a clear shot of the heart. The process lasted for approximately 15-20 minutes when she then asked me to lie on my back to get an image of the top of the heart, for which she pointed the metal instrument down under my neck in between my collar bone.

The whole process felt very odd. My body was being prodded, I had patches connected to wires all over me and the remains of the gel on different parts of my chest and neck.

“All done,” she said and started to pull off the sticky plaster wire patches. Some were caught on the odd hair and I twitched as they were removed suddenly.

She handed me some blue tissue paper which was very rough on the skin, more like fine sandpaper then ‘tissue paper’, to clean up the gel which had now formed into a clear play doh like paste stuck to my body.

I put on my t-shirt and asked, “so… how did it all look?”.  She paused and before responding there was an uneasy expression on her face as she said, “I am not at liberty to say right now”.

“Oh, ok,” I said and I gathered up the rest of my things and exited the room.

Over the next few months a familiar pattern evolved. I had a test and then received a letter in the post from a specialist saying I need to go and see another specialist for more tests.

It started to become clear that I was getting escalated from one department to another, whilst not being made aware what was going on.

Some of these appointments were in the evening and there came a point when my girlfriend asked why was I leaving home at that time:  “where are you going?” came the question, and I didn’t know what to say to her. I wasn’t sure how to say it but I also didn’t know what was going on, I hadn’t really been told yet, just more tests.  I did my best to play down the symptoms and said that I was getting ‘an MOT’ as the doctor put it.

“It’s ok, they are just running some tests and we’ll see,” I said as I got my coat and left the flat.

I had a similar unexpected run in with my sister one afternoon. I was home early from work after an appointment and we met at the front door. Feeling flustered, I couldn’t think quick enough on my feet and so told her where I had been and what was going on.

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.

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.