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 5 : The Heartbeat

“….standing in front of me, stiff as a corpse”

One day I was at home and my sister stopped me at the top of the stairs in the hallway as I walked past her bedroom.  In a cautious and caring tone she asked if she could have a listen to my heart beat.

Due to her profession she had various medical equipment at home including a stethoscope, so she placed the pad on my chest and listened. There was a pause before she said in an uneasy and nervous tone “Oh… right” whilst not looking me in the eye.

She stood there staring at my chest like a zombie, just listening, almost as if someone had flipped a switch and she had frozen in shock.

I took hold of the ear piece and listened, what I heard was dramatic and immediately apparent. There was a heavy thud followed by what sounded like a rush of water, a fast flowing river or a gust of wind, a whoosh sound. Then a sudden thud and a whoosh again.

Thud, whoosh.

Thud, whoosh.

Thud, pause whoosh.

My sister was still standing in front of me, stiff as a corpse. I gave the stethoscope back to her and she refrained from eye contact going back into her room without saying anything. I now knew why the doctor had jolted in her seat, this wasn’t the constant two beat sound you would expect. It was an unusual and strange sound to hear, the contrast from one strong thump to the opposite gushing sound.

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 8 : Questions

“He provided true care and attention when it was needed, for which I am eternally grateful.”

 

After dwelling on all this and researching as much as I could, I decided to arrange a meeting at the hospital to see the surgeon again and ask the many questions which had now come to me, so I called through to the department to get an appointment.

It wasn’t the easiest of calls to make as it appears the surgeons are kept at a distance from their patients. Getting past the receptionist took some time but she eventually agreed to my request and booked me in.

I was all set to see Dr Li to get as much information out of him and clear all the confusion I had (at least I hoped so).

I went back to St. Bart’s and waited in the same depressing room, although this time the decor and atmosphere didn’t bother me. I felt enthused to be here and get the answers I so dearly wanted.

I was called through to meet with Dr Hall who was the surgeon’s right hand man. He would be in the operating theatre working alongside the surgeon. I was fine with that, I just wanted to see a professional face to face and talk to them.

Dr Hall was younger than the surgeon and very open to all my questions, even the ones challenging the current medical view. He admired that I had come back to ask so much and felt it was the right thing to do, saying “it’s important you are as comfortable and as clear as possible, so if I can help in anyway, that’s good!”

My main concern was over Warfarin and what do they mean it’s a ‘blood thinning agent’? I wondered how this would affect the circulation of blood around the body and whether the organs may be slightly starved of blood. The idea of a getting a simple cut and being at risk of a haemorrhage horrified me, surely that was just lunacy!

Dr Hall went on to explain that blood goes through various stages before it starts to clot, these are detections the body has in place which need to occur in order to start the process. Warfarin prevents a few of these stages from happening thus slowing the clotting process but not stopping it entirely. It does not ‘thin the blood,’ that is just an expression that people use. There is no damage to other organs through taking Warfarin as the blood consistency remains the same.

I had written down a series of questions, what ifs and all possible scenarios that I could think of. How life might be afterwards and what options or limitations there would be for me. As we discussed the questions and went into more and more detail the doctor/patient relationship seemed to have blurred a little. It felt more like a discussion between two friends, one sharing his new found curiosity over a subject and the other providing knowledge and wisdom. We were like two old men sitting in their armchairs nattering away.

Without thinking I suddenly asked: “which valve would you take?”

I hadn’t written the question down and had never thought to ask but I immediately felt the need to reassure him that I would not hold it against him and understood if was not at liberty to say due to professional commitments.

Looking at me he gently smiled and said: “that’s OK. I suggest the mechanical valve to prevent going through the operation again. You are young and this is a major consideration. That’s what I would do”.

He went on to say that for the very elderly they suggest the tissue valve as they are likely to die before the valve wears out. This would give them a better way of life for however long they had left.

As the meeting came to a close I felt clearer in my understanding of the procedures and the positives and negatives of each. I felt relieved to have answers to all my questions and a few more I wasn’t expecting. If it came down to it I didn’t have to make my mind up until the night before the operation.

We had a wonderful flowing conversation which went on for about an hour and a half. I felt so much better for seeing him and I think he did too. I could sense he was open to my concerns and wanted to reassure me, not only because it was his job but also simply because he was a fellow human being. He provided true care and attention when it was needed, for which I am eternally grateful.

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 10 : The Email

“Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.”

I kept thinking I didn’t want to go through the same experience that I had with my parents every time I told someone about what was happening. It was emotionally draining and I could imagine it being the same; the looks on their faces, a silent pause while it sank in, followed by an awkward conversation. I couldn’t go through that every time.

When I got back to London I discussed the weekend and the despair I felt with my sister, and she suggested sending an email to everyone I wanted to explain things to.  It seemed like the perfect solution so I took some time and late one evening in my studio (I did a lot of music production and my studio had always been my sanctuary) I sat down and wrote the best email I could. I wanted to offer a clear explanation of what I was going through and what was going to happen so that everyone could come to their own understanding of it all in their own time and space.

Here’s a copy of the email I sent.  The subject line read simply :  ‘ :) ’

Yoooooo,

You’ll have to excuse the ‘generic-ness’ of this email but it’s the best way of emailing a bunch of people together to let you know of some news from me.

There’s no easy way of saying this, I have some serious issues with my heart and need to have surgery.

The medical term is a bicuspid aortic valve and servilely over dilated left ventricle.

In the heart there are 4 valves which pump blood from your lungs to the heart and then throughout to the body. On each of these valves there are cusps, think of flaps, which open and close to pump the blood.

You and like everybody else will have three cusps (tricuspid) on your aortic valve where as I have two (bicuspid).

This is something that about only 1% of the population have. It happened whilst ‘the process of life’ was going on in the womb and basically didn’t develop correctly.

As there are only two ‘flaps’ they have been working overtime to pump the blood around my body, they are now very weak so when they open/close they are not shutting properly to seal close and are in effect flapping backwards so blood is now re-entering the heart the wrong way, which is not good news. This means the heart is again working harder than normal to correct this, so whilst all this is going on the heart has increased in size (think of an overworked muscle getting bigger) to what is now a dangerous size. At least I have a big heart! :)

So the cycle goes on and on.

All this has come about after different tests and finally I saw the surgeon a few weeks ago who explain everything and the urgency to operate. I have known what’s going on but not quite how severe until seeing the surgeon.

As he pointed out, you know how you hear about young people just dropping dead, well this why. The heart will have a spasm and that’s it.

So this is where I am, the operation is on the 11/10 and ill be in  St Barts hospital in central (Farringdon)London.

I have done a lot of research and joined forums , checked blogs etc to speak with people who are in a similar way or have had the op etc. I do feel very knowledgeable and aware to all this, I feel a bit of an expert! ha ha

I have a few meetings with the hospital in between now and then and I have already been back to see the surgeon to quiz him on all my questions.

What’s left to decide now is I have two options for surgery. During this procedure they replace the whole valve not the just the cusps.

The choice I have is either a tissue valve or a mechanical valve replacement.

The tissue valve will be from either a pig/cow or human if available and the mechanical made from Titanium.

The titanium valve will ‘out last me’ which is good, although I need to take medication everyday for the rest of my life called Warfarin or another anticoagulant. The reason for this is the blood will form clots on the mechanical valve and for obvious reasons this is not good. They will either lodge there or break off and get stuck somewhere in the body which leads to strokes and other things.

Warfarin prevents the blood from clotting, the term they use is it ‘thins’ the blood. This way there are no clots to form.

This carries other issues as there are certain foods which you can’t eat, possible side effects and you have to change your life to a certain degree. As Warfarin prevents the blood from clotting ( basically stops the development of vitamin K) If I have a cut this could be an issue, bruises are three times bigger than normal, things like going to dentist are a problem and you can’t do anything that involves contact.

I would need regular visits to the hospital to have blood checks so the dose is constantly managed etc.

With the tissue valve I don’t need to take any medication after the post op tests etc.

The only thing with the tissue valve is they don’t last, somewhere between 15-20 years and then the process has to be repeated and the second heart surgery is riskier as you have already been through it so the body has scar tissue and will be going through the whole trauma again which is not recommended, again having to decide on a tissue or mechanical valve.

Having just turned 30 I am very young to be going through all this and to then have another open heart surgery in 15-20 years I still won’t be old! :)

Either way both options are huge life changing things to deal with and I have to make this choice.

As mentioned I have been on blogging sites and spoken with people who take warfarin etc as its not too uncommon.

I could go on and on, in a nutshell that’s it.

If you would like to go over any of this on the phone that’s fine as I am happy to speak about it, in fact I feel very calm.

I am really good and have had time to deal with this, to be honest I don’t think it’s sunk in yet, more the recovery its very long and I will need to be looked after for some time.

I’ll be in Barts Hospital from the 11/10 for a week to 10 days, depends how the body heals. If you do want to come to visit it would be great to see you, in terms of times etc that’ll be sussed out nearer the time.

From then i’ll be at home recovering, Tiana is going to look after me and then my parents. It looks like i’ll be away from work for approx. 3 months.

Whilst I am in hospital if you are looking for news etc Tiana can be contacted on……………….

I should have my mobile on me, not too sure how it will all go though.

I appreciate this will come as sudden news, I felt the best way to let you all know is via email as I can explain fully what’s going on and having this conversation face to face is not easy.

This way I hope you’ll have time to digest and get in contact with me if you feel you want to.

As mentioned I am more than happy to talk about this and the plans in place, if you have any questions etc etc.

Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.

BIG LOVE

Guy

x

I pressed send and the email was done. As people started to contact me in response it was pointed out that the operation date I had stated was in a few days’ time rather than the month that it actually was. Clearly my head wasn’t in the right space so I sent a follow up email correcting the date to 11/11/13.

Chapter 11 : The Collapse

“…..I felt a bolt of lightening in my chest, as if my heart had twisted itself into a knot with two halves turning in opposite directions…..”

Over the course of the next month I had many appointments and lots of preparation to do for the operation and whatever may come afterwards. Ultimately, I had to make a choice and needed to accept what the outcome may be.  My head was a whirlwind of information but I had a simultaneous sense of feeling separated from reality.

I felt increasingly distant from everyone and everything, as if I was on the sideline looking in.  I felt as though I was observing them all, a hidden presence watching the world go by at a distance. It was as though I was apart from the conversations.  I was physically there but not at the same time. I had a need to retreat within myself to come to begin to be at peace with the choices I made. I felt like a melancholy shadow, my world seemed to only exist within a metre around me. Unless something was immediately relevant and I needed to do something then and there, it didn’t exist to me.

By now my health was rapidly deteriorating, which I think had something to do with the release of emotions, letting go as best I could, but of course the physical decline was inevitable anyway.

The reality of it all dawned after lunch on what turned out to be my last day at work.  I started to feel very hazy; struggling to keep my eyes open as the world span before me and I felt increasingly weak.

To some degree this feeling had become the norm in the afternoon, they had started as small signs early on and had gradually increased in intensity and frequency. By the early afternoon my energy levels were depleted and I needed to rest. Some of this was due to the catalogue of medication I was now taking; the beta blockers in particular had drowsy and unpleasant side effects.  This time it was different though.

I got up and tried to walk it off, which occasionally worked. Gentling strolling up and down the corridor doing my best to ignore the swaying walls and the river-like curved shape of the floor. I put my hand out to prop me up when I needed it for extra balance.  I went into a vacant room and leant on the wall; I felt exhausted and thin, as if I was fading away. My energy had been switched off, unplugged, there was nothing left. I could feel everything draining away from my body, retreating backwards from my limbs towards my chest like water returning to its source; I was shutting down.

I had pins and needles in my left arm and I was losing balance. Part of me wanted to collapse and give up and another, stronger part prompted me to get my phone out of my pocket. With a sense of denial, I called 111, the NHS help line, explaining how I felt and my condition.  Immediately the operator told me to put the phone down and call 999.

All of a sudden I felt a bolt of lightening in my chest, as if my heart had twisted itself into a knot with two halves turning in opposite directions. Then two very hard powerful thumps hit me and my heart pounded with a huge shock, as if it was going to burst out of my body.  The second jolt was so strong that my legs gave way and I collapsed against the wall.  I managed to get my boss’s attention through a window in the door and he called 999 whilst holding me up.  With tears streaming down my face because of the shock, all I could think was ‘please, I don’t want to die at work’.

An emergency response biker arrived quickly, shortly followed by the ambulance. I was breathing heavily and quickly by this point and had now hyperventilated.  I was instructed to breathe slowly as they ran a quick test, calmed me down and then put me into the ambulance that hurtled towards A&E.  My girlfriend had arrived just in time to get into the ambulance with me and I turned to her with heavy weary eyes, dropping my head onto her shoulder and muttering: “that was terrifying.”

By the time we got to hospital I had calmed down and my heart had returned to normal.  I was put into a room and we waited for the tests to begin.  An Italian doctor greeted us both. He had small round glasses, a roughly shaved face and hair that needed a good brush; in a funny way he reminded me of a young Albert Einstein. I proceeded to inform him what just happened and the condition of my heart.

He got out his stethoscope and listened.  His eyes lit up like an inventor having a eureka moment and he got quite excited. The sound of my heart was abnormal, which to a doctor was most intriguing and quite rare. 

We went into the details of what was wrong and had a pleasant conversation about it all. It became apparent that my heart had started to fail but had, thankfully, kicked itself back into action so they had to do a few tests to check for tears and blood leakages from the heart.

A few minutes passed and the doctor asked if he could bring in one of his students to listen to my heart and see if she could form a diagnosis. I smiled and said; “sure”.  A young, female doctor with blonde hair and a white coat came in. Getting out her stethoscope she placed it on my chest. It was interesting to see the expression on her face change as she listened; a puzzled look came over her and I could see she was scrambling around in her brain for the correct medical term. Could she identify it?  Did she know what she was listening to?

Not being able to find the words the doctor asked me to tell her.  Nodding at me with recognition she offered a forced smile, wished me well and retreated out the room.  I chatted further with the doctor and asked if this meant the operation would be brought forward. He said it wouldn’t but if it happened again or had ‘gone the other way’ they would rush me straight into theatre and operate.

On reflection it made sense; there was only one thing that could happen and anyone who was in line for the operation would be in just as serious a condition so there was no reason I should be moved up the queue.  No one would be having this procedure unless it was absolutely necessary, I would have to wait my turn.

I didn’t remain in A&E long and made my way home feeling very shaken up.

Chapter 12 : Country Walks

“I had just enough air to keep me going but knew I needed more…..”

A week or so after I collapsed I went to visit my godmother for what could feasibly have been the last time.

She lives just on the outskirts of a village called Royal Wotton Basset in a cottage on a farm.  It is the epitome of typical English countryside and I love it. Being brought up in the West Country I always get a sense of respite when I visit her. It’s like going home and I refer to her as ‘Mum Number Two’.

When I got there we went for a short walk in the woods nearby to chat and go over everything that was happening. The main topic of conversation was whether I had made a decision on which valve to have. “It would be best to come to terms with that and accept the decision before you go into hospital,” she said.  I was leaning towards the tissue valve and could tell this was not what she thought was best. She did well to hide her thoughts but her reaction was clear to me.

Secret woods
Secret woods

We walked for about 10 minutes through the woods. There was a lovely autumnal air indicating that winter was well on its way. The trees had shed all their leaves and provided dominating skeleton structures against the foreground colour of tinged brown, red and yellow of the remaining leaves held on by a thread. Nature, especially woods and forests have a certain magic to them when the seasons are changing.   

We walked back to the car and I started yawning, normally to start with but it progressively increased. For every few words I uttered, mid conversation or after a couple of unsure steps I would yawn.  I just couldn’t stop yawning.

We drove back to the cottage and the yawning continued. I would take a deep breath of air and then yawn, like a fish gulping to be put back into water.  I was struggling to breathe and needed more oxygen.  My godmother asked if I was ok as something was obviously up but I didn’t feel tired and although I thought it was a bit strange just answered: “Yeah, I’m ok”.

It was an unusual feeling to yawn continuously and feel out of breath at the same time. I felt like I was underwater wanting to go up for air and not being able to, somehow I was held down. I had just enough air to keep me going but knew I needed more. Desperately I wanted to come up and take a breath, I could never quite take in enough air so kept yawning.  Eventually it stopped and I appeared to return to a normal breathing rate with much gratitude.

I spent twenty-four hours there and headed home to London.

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 14 : The Answer

I have decided to include an extra commentary on this chapter as I feel its important to remind the reader that the decision I came to is based on personal experience and the surroundings I had at the time. There is no definitive answer to the question ‘which valve would you choose?’ as the choice will always be personal. My wish is not to influence someone else’s decision, only depict the struggles and questions I was facing at the time and how I came to a peaceful resolution. 

No one was willing to give me their answer. What would they do?  Which valve would they choose?

I guess they felt their opinion may influence my judgement and they couldn’t accept the responsibility of that.  The entire medical world was pushing me towards the mechanical valve on the basis that an operation of that severity would only ever be given as a last resort, so the possibility of two should be avoided at all costs, which I did agree with.

I had three options as I saw it; I could have the mechanical valve, the tissue valve or no valve at all and simply see how long I survived.  Even if I had the operation there was no guarantee of surviving.  So in fact the part I had to make peace with was that in any scenario I would either wake up or I wouldn’t, and that I could be happy with.

It was something I meditated on daily.  I allowed this sense of calm to come over me and carried it on through my activities as best I could.  I couldn’t get my head around the idea of Warfarin and the restrictions I felt it would put on life.  The mechanical valve seemed like a great idea but nothing else surrounding it did. It was as if I was fixing one problem and creating another one.

I thought ahead in life as best I could, hoping to be able to go snowboarding again as I missed the mountains. I wanted to ride my bike and live life not feeling burdened by monthly hospital appointments with daily medication and injections.  Having just turned thirty I still felt the need to embrace a life of living.

The people I communicated with online who had a mechanical valve said it was fine and something they quickly got used to, life changes all the time and you adapt.  I felt as though the mechanical valve was like resigning yourself to a certain fate; a definite circumstance that could be avoided.

Medical advances are being made all the time in huge leaps. In ten or twenty years who knew where we would be and what the possibilities could have become?  Perhaps by then they would be able to grow my own valve, I thought.

My sister has type one diabetes so she constantly injects herself regularly to balance the levels of insulin in her body. A daily log is kept of her levels and the dose is altered accordingly.  Every now and then she goes to hospital or the doctor for check-ups.  We lived together for four and a half years so I was very familiar with the disease and how she had to change things because of it. It wasn’t something she was born with; she was diagnosed in her early twenties. Living with a type one diabetic brought the decision I had to make home to me, about what it meant to be continuously beholden to medication, and I imagined how it might be for me in a similar situation.

I had a choice about the future I wanted to have, and she never did. I could have the mechanical valve and be like that or not.

I kept thinking that it wasn’t just about the heart. There was all this emphasis on the heart and the valve but the body is a whole organism, all connected, not one part is separate from the other. It’s about a healthy whole, not just the heart. 

It was about two weeks before the operation date and I came to the conclusion I would rather have quality of life over quantity, so I decided to have the tissue valve.