“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.
“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.
“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 : ‘ :) ’
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 inSt 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.
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.
“it’s a good thing you’re here, you wouldn’t have made it to Christmas.”
After the operation I would need someone to take care of me for at least a month, so we had worked out who was going to look after me on a week-by-week basis. I would need help with everything from showering, to cooking and getting dressed; any activity required supervision as I would be totally dependent on whoever was there that week.
My parents were going to do the first week to ten days, my girlfriend would be with me the following week and my sisters were each allocated a week thereafter.
Things had been tense in the home for some time; my girlfriend and I were not communicating well and no doubt I was coming across as distant.
Mum and Dad were on their way up to stay in the flat with us and the lounge had been turned into an impromptu bedroom for them.I was getting the room ready and went downstairs into the bedroom to grab some sheets where my girlfriend was watching a TV show, and as I grabbed the sheets I made a passing comment along the lines of “you’re not watching that crap are you?” and was very firmly told to: “shut up, I want to watch the program in peace before putting up with all the family.”
I stood there in stunned silence and we both paused for what felt like a long moment.I had overstepped the mark and cautiously apologised, realising there was something else going on. She sat and focused intensely on the screen and I could sense that she wanted to say something but perhaps was in shock at her own abrupt outburst, as if she didn’t know where it had come from.
With no acknowledgment from her I left the room and unfortunately that horrible air lingered without getting resolved. It made for a tense environment and once I had finished preparing the new bedroom I wanted to go and talk to her to clear the air. All of us were under pressure and the situation wasn’t easy. I desperately wanted to see what the real reason for the outburst was but felt I should give her space, it wasn’t long before my parents arrived and we hadn’t managed to speak.
The next day I had arranged for friends and family to have lunch near the hospital. I was told to have a big meal before going in as I wasn’t allowed to eat anything from then on.I coined the phrase ‘the last lunch’ for the meal. We had a table booked in a gourmet burger diner nearby which seemed like a nice and easy option. I sat at one end with my dad opposite me and two mates either side. My girlfriend’s sister had come too as she worked close by.
My mates were chatting with Dad about what they do and sharing their stories while my mum, sister and friends giggled at the other end of the table. This was the first time my parents had met my girlfriend’s sister so there was added excitement to the meal.
There were no toasts and no announcements made, we carried on as if everything was normal. It was so lovely to hear general chatting and laughing and no mention of the operation at all.
When we were done and it was time to leave we all hugged and said good bye. My family, girlfriend and two friends walked over to the hospital with me.
At the entrance to the doors of the lift, which would take me up to the ward, I said goodbye to my mum, sister, dad and mate Ben.
I turned to embrace them and tears were flooding as I hugged them individually.My sister rushed over and gave me a desperate hug whispering: “it’s ok, this had to happen to you as you are the strong one of the family and only one who will survive”.
It was an incredible, loving embrace that paused the surrounding mayhem and gloom for a moment. As we hugged with heads planted firmly on each other’s shoulders with eyes closed, the blackness offered some peace and calm.
I could feel the tears building behind my eyelids which were doing there best to act as dams, although the pressure was mounting to release the floodgates.
Ben came over and told me softly: “don’t cry, it’s OK” and gave me a kiss on the cheek as he hugged me.
My Mum couldn’t bring herself to come near me: “this isn’t goodbye’’ she forced through spluttering tears and a jittering jaw. Dad was quick, saying: “OK Guysee” before patting me on the arm smiling as he rushed back to Mum to offer some support.
There was no point dragging out the moment any further so I got into the lift with my girlfriend and my mate James, I was staring vacantly at the lift, eyes fixed on the space between me and the doors.As we went up I laughed and joked with them both saying: “I’m glad I am not in the taxi with them. Poor Ben!”.
We got out of the lift with our tears dried and went into the ward. The nurses greeted us and showed me to where I would be staying for the night. It was a room with four beds and the other three were already occupied by older gentlemen. It was an old room which, like all the other rooms in this building, needed a good coat of paint and some life brought into what is otherwise a depressing and sombre environment.
I settled down and took in my new surroundings. My girlfriend, James and I joked and laughed about things for a while, filling the time with what conversation we could muster. Occasionally a nurse would come over and check on us to see if I was settled in. Then came the time when James felt he should leave so Tiana and I could be alone for the last hour or so. I was perched on the side of the bed and stood up to embrace him.We hugged, patting each other twice on the back.“See you later” was all I could muster as he left.
Tiana and I hadn’t really spoken at all since the night before. There was a lot going on with people coming and going and the impending circumstances hadn’t left any time to clear the air.When we had spoken there was no substance to it, just simple offerings of help and discussing times of events to come.Even without the incident the night before, what do you say in that situation?
The distance between was palpable. I was putting some of my things away when she turned to me and in a soft, anxious voice asked: “are we ok?”
Not knowing how to respond I looked at her and said: “yeh… we’re fine,” and smiled to offer some reassurance. I meant it, we were ‘fine’ although I felt confused and disappointed and I wasn’t really sure how I was supposed to respond. I was perplexed by the timing of the question and then quickly realised she needed to know and feel at ease with ‘us’ before leaving.
There were two times for the operation the following day, either 7am or early afternoon.
I was hoping for the 7am slot. I didn’t want to wake up and hang around waiting all morning. This in turn would have meant people coming back to the hospital to be with me.The nurse came over and said I would be operated on first so they would wake me up at 5am to prepare. I felt a small bit of relief, it wasn’t much but seemed a great deal considering the situation. There would be no more waiting.
Then came the time for Tiana to leave so I could settle in for the evening with various physicians coming to see me. We kissed, hugged for a few moments taking a last breath close to each other and then she left saying she would call me at 6am to speak just before I went into surgery.
I brought my laptop, book, iPod and speaker with me but before I had the chance to open my laptop a nurse came over and asked some questions followed by another physician and then the anesthetist who discussed the drugs and went over everything again one last time.
They were all friendly and good to chat to. I always did my best to have a conversation with whoever I was with so it wasn’t just medical speak and scenarios. I wanted it to be personal and to relate to who I was talking with.The physician went over the procedure one final time and in mid conversation he smoothly asked “which valve would you like?”
Here was the question I had been pondering on for so long, causing so much torment and making everything seem more complicated than it needed to be; the moment had finally arrived.
With ease and some relief, I answered: “the tissue valve please.”
A momentary silence fell inside of me; a pleasant void of stillness filled me and I couldn’t hear what anyone was saying. I realised that I had said it and it was done.
Abruptly I was pulled out of this peace, as if by an angry alarm clock early in the morning, and back to reality by a document thrust towards me titled ‘Consent Form 1’. Together we read the document word by word going over everything it had to say. It detailed what was about to happen, who the physicians were, the associated risks and that I wouldn’t hold anyone responsible in the event of it going wrong.I am providing my consent.
Right above where I had to sign my name in handwritten words it said ‘Death, Stroke, DVT, Bleeding, Wound Injection, Arnthynium, Pacemaker, Blood Transfusion and other procedure.’
Smiling at these words I chose not to dwell on them and signed my life away.
For a moment I contemplated the document and I realised the full consequences of what could happen. It was written right in front of me and I signed.I never thought too much about all the other possible scenarios, just that I would either wake up or I wouldn’t. This scared me slightly, although I took reassurance from accepting whatever would come. The decision, the choice, had been made.
We carried on chatting for a few minutes and the physician made this casual off the cuff remark: “it’s a good thing you’re here, you wouldn’t have made it to Christmas”.It was said in such a quick way, in the middle of flowing conversation, that I almost didn’t register what he had said. I then realised how lucky I was, to be here at the hospital and not dead already. It was the 11th November.
When things had quietened down for the night and the three gentleman and I were alone in the room, we started talking to each other but there wasn’t too much to say, I got the usual ‘you’re young’ tossed my way like so many times before.
We discussed our operations; they were in for various procedures. The gentleman to my right paid particular attention to me and came over to my bed to speak to me. He was Asian, younger than the other two and slightly overweight.We had a good conversation, talking mostly about business, and he told me this was his fourth operation, having had kidney and liver operations already. He was now in for the last time to hopefully get rid of cancer which had continually spread. I admired his spirit, he came across as a seasoned pro of operations, what courage he had to be back again I felt.
I then thought of his family and remembered how sad they looked as they left. They too were going through this for the fourth time, would he be ok? Would he survive?Would the cancer finally be gone?I felt their pain for a moment as if I was a member of his family and saw it from the perspective of being on the other side of all this.Watching a loved one go through pain and torment, wanting to help but not being able to and saying goodbye whilst wondering if it would be for the last time.
I lay on my bed and rolled over to one side staring out of the window next to me onto a brick wall, doing my best to clear any thoughts.
I mediated briefly and drifted off into a much needed sleep.
“….she knew what was coming; the silent horror was written in front of me.”
I was partially awake when the nurse came over at five am to wake me.Feeling a little slow, I sat up and began to come round.
She came back a few moments later and took me to the nearest shower room where I sat on a plastic fold down chair that was stuck to the wall and she started to shave my chest; I didn’t have a hairy chest but you have to be squeaky clean for surgery. Once the chest has been ‘opened up’ in surgery any loose hairs pose a threat to getting lodged under the skin and causing infection.
As the nurse focused on my chest I could tell she was nervous, she didn’t look me in the eye once. Perhaps it was shaving a thirty-year-old’s chest instead of an eighty-year-old’s for a change. It was clear this was not a part of her job she liked and that she knew what was coming; the silent horror was written in front of me.
I was now in a hospital gown and went back to lie on my bed. I checked my bag and belongings were all together, ready in a bag to be collected, and placed the iPod and speaker at the end of the bed by my feet. I did this three times to be certain everything was ready.
I could hear my phone ringing and saw it was Tiana.
“Hey, morning,” I said.
In a hesitant, soft and distant voice she asked: “are you OK, what’s happening?”
“Not much,” I said, and I explained that I had been prepped and was now ready for surgery.
The conversation had more silence than words and lasted for thirty seconds at the most. I was tired, spaced out and didn’t want to drag it out. I had nothing further to say. Words seemed pointless at this stage. I was here and it was happening.
“Ok, speak later.” I said, finishing the call and going back to methodically checking that I had everything I needed.I was sure that I did but I checked again anyway as a form of distraction.I then sat on the edge of the bed looking out of the window at the wall, doing my best to meditate and keep a sense of stillness present.
The curtain was still drawn around my bed, and a nurse came over to open it and ask me a few more questions. The lights were soft and dim, adding a sense of solemnity to the mood, as if they could feel the atmosphere and had adjusted themselves accordingly.
The other gentlemen were also up by now and I gently greeted each of them good morning.
It wasn’t long before a young doctor dressed in surgery gear came bouncing over.Putting both his hands on the end of the bed and looking up at me he said: “Ready!” – it wasn’t so much a question as a statement, and the effervescent tone made me chuckle to myself as he and another nurse started to turn my bed and wheel me out as I lay there.
I passed my roommates and one by one they each nodded and said “good luck”, “all the best”, “see you later Guy”.There was a wonderful sense of camaraderie in the air, a mutual understanding of what each other was going through, which was comforting.
We went along the corridor and into a small and narrow lift which felt akin to the type you find in an old warehouse.I pointed out the iPod and speaker at the end of the bed to the young doctor and as I did so I noticed that he had a full sleeve tattoo, which I started to discuss with him.
I remember a curious look on his face as he smiled as if to say ‘you have no idea what’s about to happen and I’ll entertain your small talk.’
We got out of the lift and into the anesthetist’s room, which was very brightly lit in contrast to the low lighting of the ward and the old rickety lift.There were three people ready to welcome me; the lady I met previously who was my anesthetist, an older man and a younger man – neither of whom I knew.They introduced themselves and asked if I would mind if the younger man administered the drugs as he was a student in training.
“Yeah ok,” I said, and the student grinned at me and started to play with my left arm.
Meanwhile, I was talking with the older man and scanning the room, having a good look at the surroundings.There were notes stuck to the wall and various medical instruments on the shelves.
I carried on chatting to the doctor and it became clear that the student was struggling.
There were a few glances between the doctors as if to say ‘‘he should be out by now, what’s going on?’’ which gave it away. The anesthetist hurriedly came over, pushing the young student aside and taking over. I noticed another door to my left which would take me to the operating theatre. I carried on chatting with the older doctor and then, mid sentence, I was out.