Chapter 7 : Putting It All Together

“My ribcage had to be cut down the middle and pushed aside so the lungs could be deflated to allow access to the heart.”

The official medical term for the condition was ‘bicuspid aortic valve’, which meant that my aortic valve had only two cusps or ‘flaps’ to pump the blood through the heart and around the body whereas a normal aortic valve has three – ‘tricuspid’.

This meant that my heart was constantly overworking itself to make up for the lack of parts. As a result blood was now leaking back into my heart the wrong way as the cusps had worn out and weren’t closing properly. Essentially they were flapping backwards.

As my heart wasn’t fully operational each pump was adding more pressure to it and requiring more strength to work, constantly over stressing it, and like any overworked muscle, making it bigger. It was a constant and dangerous cycle so the main reason for the urgency of the operation was that the heart had reached a critically large size and could stop at any moment.

I started to research online, seeking out forums to find as much information as I could about the different operations. There were many websites, forums and discussions but none of them felt relevant. They were talking and asking questions that I wasn’t interested in, it all felt too obvious. I wanted to question everything I was being told, not simply accept the diagnosis with no real idea of what it all meant.

I felt that some of the comments I found were from people who had given up and resigned themselves to what they had been told without wanting to know anymore. I also wanted to connect with someone who was going through the same thing or had been through it but I either found that people weren’t having the same heart procedure as me, didn’t think like me, were a lot older than me, or all of those things combined.

The trickiest part of the operation was getting to the heart. My ribcage had to be cut down the middle and pushed aside so the lungs could be deflated to allow access to the heart. The heartbeat would then be slowed down through cooling and medication so that it eventually stopped, with ice packs placed next to it so they could then cut into it and the whole valve could be removed and replaced.

The body needed to be prevented from starving of oxygen so a cardiopulmonary bypass machine (heart and lung machine) would be used to act in place of the organs. The machine would provide a constant pumping motion and push oxygenated blood through the body, much like the heart does, preventing any damage to organs.

Whilst all this would be going on I would, naturally, be dead with no heartbeat and not breathing. Only kept alive in a heavily sedated state by machines.

I found a few different operations for the procedure online. The first going in through the side of the body just under the ribcage to prevent opening the chest, but this wasn’t possible in my case. Another way was through a main artery in the leg by inserting a valve and pushing it up to the heart to crush the existing valve and replace it, again this wasn’t possible because it would only provide a temporary fix.

I was left to decide between a tissue or mechanical valve with a recovery time of six to twelve months.

The tissue valve would come from either a pig or cow’s heart (depending on the hospital you go to) or possibly a human heart if one was available. Once the valve was removed the tissue replacement would be sewn into place and start working just like a normal valve. After all the follow up appointments to make sure everything is going well I would be signed off with yearly check up scans (ECGs) to monitor the new valve, with no medication other than aspirin to be taken everyday as a precaution to help thin the blood. I would be free to carry on with activities as I wished, being aware not to over stress the heart too much. It seemed that life after the operation would be good and I’d be able to continue without any major restrictions.

The main reason for not having a tissue valve replacement is that it wouldn’t last and there would be no way of knowing how long it could be before it wore out, at which point another operation would be needed and the whole process repeated. However, I would be less likely to survive the operation the second time around. That valve may also not last long and so the same process is again repeated with much lower chances of making it through the operation. It would only be done a maximum of three times, with most people just the once.

I tried to get as much information as I could on the life span of a tissue valve, it seemed it could be anything from three to thirty years.

The mechanical valve however would be made from titanium and would outlast me, so only the one operation would be needed. The procedure is exactly the same. Due to the valve being made of metal however, there is a high chance that blood would get stuck to it as time went on, and form a clot which would either lodge itself to the value or break off and get stuck somewhere in the body resulting in a stroke amongst other things. To prevent this from happening I would take a blood thinning drug, the main one of which is Warfarin. This would be taken daily to control the blood clotting (production of vitamin K in the blood) with monthly hospital appointments for blood to be taken and the dosage altered if needed.

As the blood would be prevented from clotting I would not be allowed to do any contact activities as the risk of internal bleeding and damage to the body is high if not guaranteed (I’d bruise more easily and a small cut would take a long time to heal).

For example, that would mean no running due to the impact of the foot on the ground causing bruising, riding a bike because of the risk of coming off, and so on. There were some dietary restrictions as well; due to the medication I wouldn’t be able to eat cabbage or other green vegetables which are high in Vitamin K.

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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 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 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 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.

Chapter 15 : The Request

“Music has always been a huge part of my life……creating a playlist for the operation seemed natural.”

At one of the appointments my call on nurse Emma had explained that many people ask for a religious object or something of personal importance to have nearby while they are operated on. Some people have had a special handkerchief, a bible or a family ring on the pillow next to them as they are asleep. The surgeon’s would accommodate any request as best they could to help the peace of mind of the patient. So was there anything I would like? 

Music came straight to mind.

Music has always been a huge part of my life. As a child I always latched onto a song and had to find out as much information about an artist as I could.  I started clubbing at fourteen going to as many gigs and festivals as I could. It was an inextricable part of my life.  Music has always been my ‘go to’ retreat for anything that came along. It is the perfect companion for any mood.

I had been DJing and producing music for years so the idea of creating a playlist for the operation seemed natural.  I requested that music be played throughout the operation and asked if I could be the one to make the playlist.  Emma gave me a puzzled look and agreed to ask the surgeon, enquiring as to how it would be done.

“I could bring an iPod and speaker in with me which would just need you to press play,” I suggested, adding: “if at any point it distracted any member of the operating team they could turn it off.”

“You will be under general anaesthetic and won’t be able to hear anything,” said Emma.

I wasn’t so sure and imagined it being like a very deep sleep. If this was the case I had heard, read and was aware of things getting into your subconscious so I wanted to put together a mix that meant a lot to me to keep me soothed.

She got back to me with the news the surgeon had agreed, commenting it had never been done before, and I created a four-hour playlist of music that had affected me in some way over my life and felt appropriate at the time. I was producing a lot of dance music and wanted this to be reflected whilst the operation was happening in order to stay relevant in my mind and perhaps bring some new inspiration.

In the end it was more rushed than I would have liked.  Time had crept up very quickly, organising everything and everyone.  The week before the operation on one afternoon I sat in front of my computer and went through my collection. I drew from anything that had an emotional response.

The playlist is below and is called: Music for the Soul

Leftfield: Melt
Leftfield: Dusted
Massive Attack: Angel
Massive Attack: Teardrop
Leftfield: Chant of a Poorman
Leftfield: Inspection Check one
Leftfield: Song of Life
Leftfield: Phat Planet
Chemical Brothers: Saturate
Chemical Brothers: Setting Sun
Chemical Brothers: Galvanize
Chemical Brothers: Do it again
Mylo: Doctor Pressure Rmx
Kosheen: Hungry
Gossip: Heavy Cross
Gossip: Dimestore Diamond
Gorillaz: Dirty Harry
Timbaland: The way I are
Busta Rhymes: Turn it up
Busta Rhymes: Woo Haa! Got you all in check
Busta Rhymes: Gimme Some more
Timbaland: Oh Timbaland
Roni Size: Friends
Sia: Drink to get drunk RMX
Florence and the Machine: You’ve got the love (Mark Knight rmx)
Wolfgang Gartner: Menage A Trois
Wolfgang Gartner: Shrunken heads
Truegold: DAWN (test master) – This is a track I was producing at the time, which I never finished.
Leftfield: Storm 3000
Leftfield: Swords
Leftfield: 6/8 War
Leftfield: Rhinos Prayer
Mylo: Emotion 98.6
Bill Withers: Live at Carnegie Hall (Full album) (Best listened to on Spotify
Otis Redding: Love Man
Rage Against The Machine: Ghost Of Tom Joad

Chapter 25 : Cracking Chest

“I hadn’t realised…. I now had metal rings up my ribcage, holding it in place….These metal rings along with a cow’s valve are now part of me.”

 

During my recovery time I was concerned about how well my chest was healing. The wound looked fine, as fine as a scar all the way down your chest can do, but when I moved or got up it made a cracking sound which was very unnerving.  I would hear a snap coming from my chest and I was anxious that the bones hadn’t fused together and were jarring on each other or could split further and worse, pop open!  So I managed to arrange an appointment back at Bart’s to discuss this with the team.

I saw the same female doctor who greeted me with her big smile and colourful outfit as well as a practitioner who was the surgeon’s ‘number one’ in the operating theatre. He was a tall man in his late forties whose hair had started to whiten.  He wore square glasses that matched the square frame of shoulders and upper body. He looked stereotypical and without his shirt and trousers he would have been indistinguishable amongst the other staff.

Like all the professionals I had met he had an air of certainty about him, just like the surgeon.

I felt reassured seeing them, they both had a lot of involvement in my case and knew me well. They were welcoming, although a little unsettled about why I was there.  I explained my concern over the cracking sound coming from my chest. Placing his index and forefingers on my chest the  man moved them up and down around the edge of the scar in a clockwise motion, asking how it felt as he pressed down firmly on the skin.  I didn’t feel any pain and couldn’t even really feel the pressure he was applying, it was all still numb and the scar tissue was dense.

‘‘It’s fine,” he said with conviction, continuing: “with a procedure of this nature it takes the body a long time to heal. It feels good to me as there is no movement. Just allow the body to heal, it does take time.’’

He was reassuring and told me exactly what I wanted and needed to hear.  What I hadn’t realised was that I now had metal rings up my ribcage, holding it in place as it simply wouldn’t be held together by anything else.  They would literally spring open without the clamps that had been used to seal me back up. 

The below images show before and after surgery.

Pre surgery Xray
Pre surgery Xray
Post surgery Xray
Post surgery Xray

These metal rings along with a cow’s valve are now part of me.

It was a pleasant conversation and we discussed a lot of things. I had a fond memory of him checking on me on the third day after the operation and saying he would do his best to get me out within a few days, which was just what I had wanted to hear at that time, so I had instantly liked him.  He asked if I would like to come back to Bart’s for my yearly checks instead of the other hospital, to which I answered: ‘‘definitely!’’

The other hospital hadn’t instilled much faith in me, not just because of my meeting with Manuel but because when I had been there it felt like the whole place was full of crazy people.  Although, I should have been getting used to that by now.