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.

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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 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 23 : Make Or Break

I smiled and said simply: “for life; the freedom of living.” 

I left the wards and headed to my appointment. It was on the ground floor of the same building and an elderly doctor in a long white coat and a pair of glasses greeted me. He was considerate and helped where he could to make sure I was comfortable; I still couldn’t turn too easily so he helped me onto the bed.

The appointment was for an echocardiogram and blood pressure check; the same test I had several times by now, so I was used to all the wires and bleeps.  After the test was done he explained there would be a 30-minute wait while the results were sent over to the surgeon to review and I would then chat to him about what they revealed.

I sat up and cleaned the gel off my chest with the same coarse blue tissue paper that’s everywhere in hospitals, and thanked him for his time. I got ready to leave and shyly he said: ‘’If you don’t mind me asking, why did you go for the tissue valve?’’

I smiled and said simply: ‘’for life; the freedom of living.’’  He acknowledged my point, nodding his head, and I left.

I went outside to the central courtyard where I sat on a bench and contemplated what had just happened and where I was. I sat there with a buzz of activity swarming around me. I was in the central crossroads of the hospital hive with people rushing back and forth, frantically discussing their woes. I looked across the courtyard and tears started to creep out the corners of my eyes and down my face. A load of pressure had been released, which I hadn’t even known I was carrying. Like lifting a lid off a boiling pan, the pressure had dissipated and I felt both happy and sad at the same time. There was a sense of relief and I realised how far I had come in such a short space of time.

I gathered my thoughts, composed myself and went up to the where the appointment was. I was in the same waiting room I had sat in the first time I visited before the operation. The décor hadn’t changed and this time it didn’t bother me, in fact I barely noticed the gloom of the room.

I could feel myself passing through it like air, the room no longer portrayed how I felt. I was called and greeted by the same female doctor who had been assigned to me when I was in hospital. Wearing a bright red over coat she lit up the room and welcomed me with her characteristic big smile once again, asking how I was and leading me into a room.

We spoke about lots of things and I could sense having an open, two-way conversation with a patient was a rare thing for these practitioners, not only discussing my progress but also life and how she was.  She explained that the surgeon wasn’t here as there was no need and the results had come back fine.  I was free to go and carry on getting well. The elation of what these words actually meant only really hit me some time later.

The appointment had seemed like the make or break check-up, and I could now start to let go of the hospital, all the pain and confusion that had gone with it, and focus on full recovery and living my life.

I handed the doctor my last card and asked she made sure all the theatre team saw it. I wanted to give her a big hug as I felt the need to share the overwhelming joy I felt from the news, but it seemed as though it would have been deemed inappropriate, so I smiled and walked out on Cloud Nine. If I could have jumped up in the air I would have with a Tigger style bounce.

I went to Tiana’s office to meet her afterwards and catch the bus home together. She asked how it all went and I told her how incredible I felt and the wonderful discussions I had with the nurses on each ward.  Learning over I rested my head on her shoulder and tears of joy gently fell from my eyes and made their way down my face.

I MADE IT.

Chapter 24 : Fawlty Hospitals

‘‘You’re five foot and twelve inches’’

 

My next appointment was a week after my trip back to Bart’s, and it was at the local hospital to meet with the nurse who would be working with me on my rehabilitation programme.  The hospital wasn’t too far away from where I lived so I decided to walk to it as part of my daily exercise routine, and my friend Ben came along to support me.

As we got nearer the hospital there was a low mist covering the streets. Despite being daytime the streetlights were on and added an orange tinge to the fog. It was the height of winter so there was that grey gloom in the sky that’s typical of British weather at that time of year. With the mist, orange haze and grey sky overhead it all added up to an eerie atmosphere as we walked.

The hospital was a lot smaller than Bart’s so it didn’t take long to find out where to go.  I wasn’t sure what to expect; I’d been told that we would be discussing an exercise regime with meetings on a weekly basis.

We settled down in a small and cramped waiting room and a nurse came along shortly after our arrival and called my name, gesturing that we should follow her. She was quite short and had an air of bewilderment about her. We stopped in a hallway next to the waiting room and she said:

‘‘ooohhhh you’re very young, are you still at college?’’

I was surprised and not sure if she was joking or trying to be nice.  I responded playfully with ‘‘I’m thirty years old, do I look seventeen? That’s quite a difference,’’ and glanced at Ben who was chuckling to himself. 

She responded abruptly with “oh, well you never know these days!” before going on to say: “you Western lads have it all; cars, houses, mortgages and so young. It’s not like that in Africa.’’

I turned towards Ben who was looking back at me with a bemused expression to match my own as we wondered what she was going on about and where the comment had come from.  Hesitating I asked what she meant: “It’s easier over here and I’m just never sure, as you do look so young. It’s the way things are,” came the response.

I stood in the hallway not sure what to expect next and felt an awkward pause. Not knowing what to say I remained silent and waited for her cue.  She continued without a fuss as if the previous conversation hadn’t happened: “ok, I need to measure your height and weight, please stand here against this wall,” she said, gesturing accordingly.

I turned to have my back against the wall and she got out a measuring tape, lining it up against me and in a definitive tone said: ‘‘You’re five foot and twelve inches’’.

I paused, then chuckled and coughed at the same time in amazement, looking at Ben who by now had his head in his hands, and I said: ‘’do you mean six foot? I thought I was five foot eleven inches so maybe I gained some height in hospital!’’

Muttering under her breath she said: “oh yes, well, it’s all the same,” and rolled the tape measure up quickly. She then asked me to step on some scales and I wondered what she was going to come up with next.  Thankfully she confirmed my weight as 67kilograms.

‘‘Right, follow me into here please,’’ she said and we went into a long but small room which had a low ceiling. It felt like an afterthought in the architect’s design.  By now I wasn’t sure what to expect so thought I’d let this play out and see what happened.

We sat down and she asked me how I was and what procedure I had.  I paused for a moment in shock and despair. I could feel the disbelief in Ben who was standing over in the corner.  She had carried into the room and placed on the table next to her a big folder with my name on it, which clearly contained all the notes from the past few months.

“Don’t you know?  Haven’t you read the file and been briefed?  Isn’t it all in there?’’ I asked, pointing to the folder.  Nonetheless, I was taken aback by this and immediately thought I had better tell her to save any confusion. So I summed up the operation, the type of valve and what had lead to all this.

“So you went for the tissue valve and not the mechanical one?  Oh dear that’s not what is recommended.’’ She said.

I chuckled and refrained from reacting to her. I suppose it made sense for this to carry on in the same the manner it started.

‘‘It’s a personal decision and I felt this was best for me.’’ I replied.

I think Ben was banging his head against the wall at this point and about to demand that we saw someone else.

She told me the rehabilitation sessions would take place at a centre nearby and didn’t feel that I needed to start at the hospital with the first round: “the majority of patients start at the hospital where you have lots of help and go through all the different exercises very slowly to begin rebuilding the movement and strength,’’ she said, but as I had walked to the hospital she could see that I was already beyond phase one and so I could start at phase two.

I quizzed her more on this, not feeling too comfortable with the advice after the charade that was the previous fifteen-minutes: “It’s fine, you needn’t worry. The sessions are every Tuesday from 14:00 and here is the address,’’ she said.  Handing me a letter she continued: “the exercise routine is followed by a discussion from someone who comes in to speak on various topics, a medical expert, psychological expert etc. to help and offer advice.’’

The idea of meeting people who had gone through the same thing as I had, and then experts in different fields helping with advice on medication, adapting mentally to the situation and how to deal with things emotionally appealed to me greatly.

Ben and I then left and walked home, discussing and laughing about the last thirty minutes: ‘‘it’s a good thing you didn’t go there for any confidence building or support, because that’s the last thing you got! I mean, what the hell was all that about?’’ he said.  All we could do was laugh in amazement between ourselves. If Ben hadn’t been with me I would have thought I had imagined it all.

We walked through the fog and as it started to lift we mentioned how the whole situation could almost have been another reality that the fog had taken us to, it was so surreal.

The meeting reminded me of scenes from the TV show Fawlty Towers, so I decided to nickname the nurse Manuel.

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.

Chapter 26 : Rehabilitation

“I didn’t know how far from total recovery I was but it didn’t matter because I felt good and appreciated every step.”

 

My first rehabilitation session was now due and I was looking forward to it. The idea of being more proactive with an exercise routine, seeing professionals and being surrounded by people who had been through the same torment, felt reassuring. It could be a positive environment to be in, helping each other to get well, I thought.

I was hoping to be able to connect with them as they had been through something similar to me, so they would know certain things that I couldn’t explain or relate to people. I knew everyone would be a lot older than me, but it didn’t bother me. The nurses seemed to think it would be an issue as they wouldn’t want to communicate with me; I struggled to think why, on a logical basis of other than my age, as there would be a lot that could be discussed. We had a shared experience and that’s what was important.

The programme was scheduled on a rolling basis for every six to eight weeks and would focus on the same group of people.  I was greeted at the sports centre by Manuel and signed in.  We had a room on the ground floor that had been allocated to us and it was large, with mirrors from floor to ceiling on two walls and a series of long, thin rectangular windows on another side to allow anyone to see in before entering the room. On the fourth wall was a projector screen, a set of speakers and cages on the floor containing various bits of equipment.

Right down the centre of the room, from one side to another, was a stretch of monkey bars spaced at different distances from each other, fastened along the ceiling. Looking at the bars I pondered on when I could have bounced up there and swung enthusiastically between them pulling myself up with ease.

Next to the wall with windows there were chairs lined up for us to sit on and wait for everyone to arrive.

Two older gentlemen, who barely acknowledged me as I said hello, were already there.  I sat down next to one of them who was quite large and seemed bothered to be there, almost in a huff as if he had better things to do with his time. I introduced myself and after a moment of silence leant across to him and said: “that operation was fun eh?!” hoping to ease into a conversation or at least get a smile.

He looked at me puzzled, frowning as if he had no idea what I was talking about and turned his head away, ignoring me. I said nothing and didn’t take it personally. Perhaps he found it hard to talk about the procedure and was still going through his own emotional journey of recovery.  I was a stranger and very young by comparison, after all. We waited and a few more people arrived.

The fitness instructor in charge specialised in After Operational Medical Care, and she took us through the first set of exercises. She was from New Zealand, the slight twang in her accent gave it away, and in her late twenties or early thirties.  She had a slender build, brown hair and a very attractive bum in tight joggings, which no doubt helped. Quite the opposite of Manuel who was short and slightly overweight.

We did simple stretches with some movement and walked in circles, like horses in a ring on a lead rope, round and round with the instructor at the centre.  We would switch directions and then finally do some more stretches.

To say it was basic doesn’t even come close, for anyone else it wouldn’t have even been a warm up.  The hardest part was a standing up press up which involved standing facing a wall and placing both arms out with our hands against it, then leaning in and pushing ourselves back again; it was a press up standing up. I could feel the lack of strength and wanted to stop after a few repetitions.  Even a simple movement like that was hard and tiring.

The muscle pain was evident, but I didn’t mind. I was happy to be away from home, taking part in an activity and knowing I was getting stronger every moment. I was happy to feel like I was living.

We also had 0.5-2kg weights for arm pumps of thirty seconds each. Even these felt heavy and after a few movements of raising my arm up and down a kilogram soon turned into a tonne. The main point of the routine was to build the heart rate up slowly over a period of time and then slowly bring it back down again. It was a long warm up and cool down process; a gentle hill of exercise gradually sloping up and then down again.

We took our heart rate and blood pressure at the beginning and end of the session for a record to be kept throughout the course and to see the difference at each session. Placing our first and middle fingers on the wrist facing upwards and feeling for a beat, then counting it for fifteen seconds and multiplying it by four to get the rate for one minute. Some of the other members struggled to find their heartbeat, and looking at them throughout the session I could see why. They were frail and old. The results were quite interesting and varied due the medication and also different amounts of it. Some of the heart rates were very slow thanks to the beta blockers; I was very thankful to not be on those anymore, I remembered how exhausted they made me feel, which makes sense if your heart rate is forcibly slowed down.

At the end we sat on chairs and Manuel started to talk about all the different types of heart operation, the signs that lead up to them and also what to look out for.  After a while I couldn’t help but ask: ‘’why are we going over all this?’’ Continuing with, ‘’everybody in the room has had symptoms, seen a specialist and then had an operation. I’m confused about why we are going over all the signs when we have been through it. We are on the other side of this, shouldn’t we be be learning about recovery tips?’’

She didn’t seem to understand what I was saying so I rephrased the question pointing out that this is old news for us and you become a bit of a mini expert throughout the surgery process, so learning about the symptoms didn’t make sense, to me at any rate.

Manuel stood in silence for a moment, I was half expecting ‘’que?’’ to come out of her mouth.

‘‘It’s what we’re told to do and have always done at the start,” she said.

With that response I realised I wasn’t going to get anywhere so I remained silent and let her continue.  The last procedure she went over was valve replacement surgery.  She summed it up quite well and when she got to the decision that patients have to make regarding a tissue or mechanical valve she said: ‘‘you would only go for the mechanical valve as it’s silly not to,” and glossed over the entire subject as if it was completely irrelevant.

If I hadn’t had the previous meetings with her and affectionately dubbed her Manuel, I imagine I would have reacted strongly at this point and challenged her opinion. Instead I realised that she simply hadn’t bothered to contemplate both scenarios and was relying on her medical notes or script to get through the presentation and interpreted them in this way without thinking for herself. 

‘Why would you willing go through another operation again?’ was the limit of her understanding. I chuckled to myself in disbelief, did she even read my notes?

Later I learned that the other people on the rehabilitation programme had been through a different operation to me. Most had a stent inserted into an artery having suffered either a heart attack or angina. The stent was inserted with an injection in the thigh and pushed up through an artery to where it needed to widen a blood vessel which was narrow. They would have been in and out of hospital in under twenty-four hours with no major trauma.  I suddenly realised this was why the larger gentleman had given me an odd look, it wasn’t anything to go through compared to open heart surgery. 

It then dawned on me that I would have to carry on not being able to relate to anyone or share my experience with them.

Despite all of this I still, I looked forward to the classes as it was a time when I would be exercising beyond the normal day-to-day routine and I could feel myself getting fitter and stronger. For some reason we only had two talks after the exercise classes in the end. The other speakers either couldn’t make it or there was a mix up. I was disappointed but didn’t let it bother me and focused on the physical side of improvement.

About half way through the eight-week programme, the New Zealand fitness instructor was swapped for another lady who I instantly connected with. She was older, probably in her mid forties and resembled more of a mother figure. Kind, understanding and always smiling I seemed to be able to talk to her easily; she always had time.

She took us through the last few sessions and then up into the gym.  On the last session I managed to jog gently on the treadmill and I couldn’t stop smiling on the inside and out. I never thought I would be able to run again or even want to, and here I was jogging!  I knew for certain if I had gone for the mechanical valve I wouldn’t have been able to, that choice would have been made for me because of the risk of bruising, but here I was with the freedom to choose for myself.

Throughout the whole process of getting stronger I always felt good. The sense of achievement at doing the smallest thing was so rewarding.  Every week I could do something I simply couldn’t in the previous one.  Each day I would get up and make sure I did just that little bit more than the day before; one more step on my walk, a deeper breath, anything I was doing I improved on what I had done previously.

Throughout the third month of recovery I felt the happiest I had ever done in my life. I was feeling well and could really sense the progress I was making. I had nothing to do but get up, feel good and carry that with me throughout the day.

It was a wonderful period of calm and joy, the simple discovery of just feeling well was all I had and that brought tremendous peace and presence into my life.  The simplest tasks were a joy and I did everything with the utmost care and attention, partly because I was still taking time to do things but also because I could. 

I didn’t know how far from total recovery I was but it didn’t matter because I felt good and appreciated every step.

Chapter 27 : Understanding It All

“Again, with acceptance I found release.”

 

I began to notice that my body felt different and it would reject certain foods and drink quite quickly. My sense of taste had changed slightly; one of the comical sides to this was that I seemed to be going off dairy which was of great amusement to family and friends as I was now part cow after all. I have always been a big fan of cheese but I didn’t have the desire or taste for it any more.

I found myself not wanting milk and started to have oat milk instead.  My body would let me know instantly if something was wrong or if I was in discomfort. I felt very in tune with every aspect of how I was feeling on a physical level, more than I ever had done before. My senses seemed heightened and quicker to react, as if I was coming to life with extra feeling.

I thought this could have been down to having gone through so much pain and torment, now my body is on hyper alert for anything that wasn’t good for it, and it was reacting dramatically or rather, with a sense of urgency. 

Everything felt exaggerated, perhaps now that I was finally well anything other than that normal feeling reminded me of not feeling good so it induced signs of alert.

Without knowing it, there was a lot I hadn’t dealt with. For the most part I maintained a sense of being in the now and I found that total acceptance was key.  The better I got physically, the more I noticed my emotions and internal struggles were starting to come forward. It seemed like they had been put aside while my focus and strength was on the immediate task at hand, which was physical as it was all I could do. Now that I was able to do practical things, the emotional pain and confusion required healing.

The situation and events hadn’t just involved me; the ripples had dispersed beyond my knowing.

Physically it may have been happening to me and I had the weight of the decisions to make, but my family and the people around me had been going through their own emotions, questions and internal angst.

It became apparent that it was the time after the operation rather than during it that would reveal the most about the relationships around me; showing who would actually care and be there when things got hard.  In one sense I felt lucky as all I had to do was simply get on and get well. 

Before the operation all I had to focus on was that I would either wake up or not. I didn’t have to contemplate anything else.  Once the decision for the valve was done it became that ‘simple’ for me. I was not on the other side, watching someone go through it, seeing their health deteriorate before my eyes and having to deal with the potential loss, so I had no way of understanding how anybody else felt.  In that sense, perhaps it was similar to the way I felt about not having anyone to empathise with about the operation itself.  At the time I didn’t have the emotional strength to see things from their side and used all the strength I had to remain positive and free from turmoil.

I realised the relationship I was in with my girlfriend wasn’t good and ultimately it wasn’t going anywhere.  I didn’t love Tiana and it seemed as though she felt trapped by the situation and couldn’t cope, or at least that’s how I interpreted her behaviour. Whether I had misread everything or not I didn’t feel the same as I once had done, and decided to speak to her about it.

Breaking up is never easy, especially after what had happened and I was still on the road to recovery, building up my strength. It felt right to break free and it became clear it was part of the process of healing and moving on.

For the following two weeks I entered into a very deep depression. I had never felt like that before; I was like a zombie; half asleep and never quite there.  I was going through the motions of my daily routine, plodding along but my feet felt stuck to the ground as if I was dragging them everywhere, tied to a heavy boulder; I felt like I was always being held back. I went out on a nearly constant thirty-six-hour binge and subsequently felt extremely ill. I had now aided my depression with twenty-four hours of vomiting and an extensive hangover which took a week to recover from. I had reverted to my old ways, dealing with things by lashing out, and it turned the cloud of depression into a thick, dark overbearing thunderstorm.  I felt hurt, tortured, heavy and twisted inside.

Going through the motions was all I could do. I would get up, eat, and walk, like a puppet I felt my body moving but it was like I wasn’t doing it myself. I was a few feet behind the movement, pulled along, observing, disconnected from the reality I was living.

Breaking up with Tiana had in part brought on the realisation of what had happened over the previous nine months; the lead up to the operation and everything else, and it all came crashing down on me.  The enormity of it all had finally hit me and it was a dark few weeks that seemed all encompassing.

I am grateful for the daily meditations and continual reflection I did on everything which then allowed that feeling of heaviness to dissipate, freeing me up to realise how good I actually felt and focus on the positive progress I had made.

Again, with acceptance I found release.