Fiction vs Reality of Brugada

When I read that Eastenders had done a Brugada Storyline with one of their characters, I decided to check it out on BBC Iplayer.

Many years ago Eastenders had a slogan ‘Everyone Talking About It’ oddly for me nobody was talking about it. I didn’t get messages or comments from friends or family, I came across this story via a Facebook newsfeed. My weekly phone call to my parents and not a word was mentioned, there was a time my mum would fill me in on what went on in the soaps. Maybe this story is not relevant to me anymore, it’s been 9 years since my cardiac arrest and my diagnosis of Brugada Syndrome is something of the past, though I live with it every day of my life.

So I sat down and watched these episodes with the hope that this storyline would raise awareness to my condition and enlighten people to the actual risk of sudden death in young people. Kush Kazemi suffered his cardiac arrest towards the end of Tuesday 12th September episode after Denise snubs the idea of them living together, he walks out onto the Square and collapses. Sonya Jackson jumps into action, knowing that the mini-mart as a defibrillator, which she demands Kim to get whilst she performs CPR.
Watching Kush collapse sent a shiver down my spine, since my cardiac arrest I avoid shows like causality ‘cause I don’t like seeing the use of defibrillators, so seeing Kush collapse was very distressing for me.
I liked that it happened this way because there were no warning signs, and that is the reality for so many with undiagnosed heart conditions.

Go back to 2012 and watch Fabrice Muamba collapse on YouTube or this powerful video from Cardiac Risk in the Young https://youtu.be/amULgZg6zEQ

My story is a little different, I suffered my cardiac arrest on the finish line of Hasting Half Marathon in 2008, my finish time was 1hr 49 minutes. I don’t remember running that day, I travelled to Hastings that morning with other runners from the Brighton Jog Shop. I do remember it being a miserable rainy day, I remember messaging a couple of people saying something wasn’t right, I will message everyone once I finished. Still, to this day it doesn’t make sense to me, I was a fit healthy young person, the year before I had run the London Marathon and I was part of a run group.

I should be thankful that it happened to me in Hastings where the Red Cross and emergency services were at hand to save my life, had it happened any other time, well you wouldn’t be reading this now.
I can only imagine what it was like for the people on the scene, the moment they realised that I had gone into cardiac arrest, and for all the people to witness such an event. My sister getting the phone call from the police, informing what had happened to me and that sinking feeling that they could possibly lose me.
Thankfully my sister was back home visiting my parents that weekend, so they all jumped in the car and drove to Hastings. They were warned that by the time they get to Hasting that I could be gone, the fear and tears my whole family went through, that car journey must have felt like the longest car journey of their lives.

I’m almost to tears writing this now, a cardiac arrest has an emotional impact on everyone. Then my sister having to go through my phone to contact people to them what had happened to me, trying her hardest not to break down and stay strong for me. My friend Charlie said she was at work when she got the call, and that she could not process what my sister was telling her.

Back to fiction and Kush is now unconscious in the hospital ( They mention that he is on drugs, which suggest an induced coma, this was not confirmed.) by the end of this episode he is awake. On the Square the rumour mill was running, some character questioning what happened, “he is young and healthy”, “he must have been on something?”, “It’s not right”. After my cardiac arrest, my room was searched by the police (This is hearsay by my housemates at the time) They were looking for probable cause to why a young person had a cardiac arrest. The police also went to my place of work and informed what had happened to me.

In reality a cardiac arrest it is different for everyone, personally, I was put into an induced coma (a deep state of unconsciousness) brought on by a controlled dose of a barbiturate drug, usually pentobarbital or thiopental. Due to having a cardiac arrest they were unable to carry out further investigations due to suffering from a chest infection (Pneumonia Postcardiac arrest syndrome). Kush to have no ill effect from his cardiac arrest didn’t ring true to me, I understand from a story point of view people want a quick conclusion, for me this story needed time to develop.

Coming out of my induced coma was like a scary movie, I was wired to the elevens, naked bar an hospital gown which doesn’t cover my modesty if you’re thrashing about, blurs of nurses checking in on me, family surrounding me, and the tears that followed. Thankfully my sister fetched my childhood cuddly toy Sweep from my house, she knew that I would want him to comfort me from this pain. I was informed very early on during my hospital stay that I would be getting an ICD (Implantable Cardioverter Defibrillator) at the time it felt like I had no choice in this matter.

One of the books that gave to me to read was called ‘When a Young Person Dies’, I do believe that there are better publications out there now. I remember taking everything in my stride, in truth I was numb inside and I wanted to put a brave face on for everyone, I didn’t understand what was going on. Being in Hastings I was mainly alone, my parents only stayed until I woke, my sister visited as much as she could and so did a handful of friends. I had lots of well wishes, from friends, including the TNT driver sent me a get well soon card, I didn’t realise how much this could affect people.

For 3 weeks I would stay at Hastings Conquest Hospital, My 3-week stay was due to the chest infection, that took nearly a week of antibiotics to clear that up. Then there was lots of consultants consulting what to do with me, 100s of Ecg, so much blood taken, Easter Holiday and Bank Holiday all happened so everything took longer. I was punctured so much with needles, that one nurse severed a nerve in my right hand, that for 2 years I would suffer from pins & needles in the palm of my hand.

Having a cardiac condition I was in a ward surrounded by the elderly, old people with dodgy hearts.
One night the elderly guy next to me passed away, the nurses lied and said that he had been transferred to another ward. It was tough because they didn’t know what condition I had some nurses who wouldn’t allow me to leave the bed for the toilet, in fear that I would have a cardiac arrest. So a commode or a piss bottle would be given and the curtains would be drawn, my dignity had been stripped.

In hospital after my cardiac arrest, with my finishing medal I did become something of a celebrity in hospital, BBC South News came to the hospital and interviewed me from my deathbed. The nurses wheeled in a TV so everyone could watch the news that evening. It was then decided that I would have an MRI scan at Royal Brompton Hospital in London, I remember this day being transported in an old ambulance with a nurse, we stopped at burger stand on the highway en route, that hot dog with onions never tasted better. After my MRI scan travelled back to Hastings Conquest and it was decided that I had Brugada Syndrome and I would finally be transported to Brighton Royal Sussex County Hospital to have my ICD implanted.

In Eastenders, due to having no ill effect from his cardiac arrest, Kush was able to go straight into consultation, and it was quickly determined that he should have the Ajmaline Challenge to determine if he had Brugada Syndrome. It was briefly mentioned what the drug would do, and the risk, but I was more surprised on how quick that it was decided on Ajmaline Challenge. It was confirmed that Kush had Brugada and that he will have an ICD implanted and that his family would need to be tested. They rush Kush into Theatre, Denise is afraid that she going to lose Kush so asks him to marry her as he is wheeled away, with a smile he says “Yes”.

Personally, I would have ended that episode without an answer, the drums, leaving people wondering his answer and if will he survive to give Denise his answer, but I don’t write soaps. Once I got my diagnosis, I was transferred within a couple of days to Brighton, and my procedure for the implantation of the ICD was the very next day. So I don’t have much of a problem with Kush getting rushed into theatre, though maybe a couple of days would have been more realistic.

The day of my procedure I could not sleep the night before, my main fear was that I wasn’t going to wake up after the procedure, I never had an operation before. I remember washing twice that morning before going to the theatre, calling my parents and trying not to cry. Scared that I may not hear their voice again and not knowing what life will hold for me after this day if I ever had a life. When they came to collect me, I wanted to say that I did not want this, I just wanted to go home, laying on the bed, being wheeled to the theatre, a solitary tear rolled down my cheek. The nurse tried to reassure me that everything was going to be okay, it really wasn’t.

The next episode of Eastenders and Kush is out of the hospital and in the cafe having a coffee with Denise. Later on in that episode, he visits his mum (Carmel Kazemi) in the hospital and she is also diagnosed with Brugada Syndrome and it is advised that she should get a defibrillator implanted, so she goes into theatre for an ICD.

There was a twitter outrage wondering if an episode of Eastenders had been missed, they hadn’t, I had to double check myself if I had missed an episode. After I had my ICD implanted I have to admit I was released from within hospital within 24hrs, so I guess Kush being out of the hospital in the next episode isn’t unusual. My problem is the actor movement after having a cardiac arrest, my defibrillator was placed under the collarbone. After having a defibrillator implanted, I was unable to lift my arm above shoulder height for 6+ weeks, my device is placed below the collarbone. The technology of ICD is getting better, and Kush may have received a side implantation which isn’t as intrusive. The thing is, I don’t believe Kush should have been able to hug or move in the way that he did after the implantation of any device.

Another aspect of this episode that I didn’t like was that Carmel and her other son were tested so quickly. I love the NHS, but to get the family consulted can take months, if not years. Then to be given an ICD is laughable, I have known so many people that have to fight for this. Cardiologists won’t give an ICD to people so easily, especially to someone who has shown no symptoms. This whole processed was too rushed for me and is far from reality, in other words, another missed opportunity for the storyline to develop. Carmel could have declined the device, gone into denial, which would have left Kush and brother distressed about their mother’s welfare.

I woke from my procedure with a room full of friends, people that couldn’t make it to Hastings and my sister, I was overwhelmed. I remember coming over funny after having my procedure, and being sick, it wasn’t because of the operation it was seeing everyone and being alive that got to me. Bruised & battered after my ICD implantation.

The next day I was released from the hospital, and this horrible ordeal was over, I was so thankful to be outside after 3 weeks. They told me to rest up for a few days, but I wanted to get out and walk, I wanted to breathe and see the world again. Go to the cinema, and do the things that I wasn’t able to, on this day we saw Son Of Rambow, on route to the cinema I remember seeing a ladybird, and getting teary-eyed because I had forgotten about such beauties in life, and that I was alive to witness them. If I could have gone out and danced on the dancefloor of a Revenge, I would have gone because I wanted to live.

A couple of months after my cardiac arrest I would go to Hastings to an award ceremony, to give an award to the people that saved my life. At the award ceremony, there was a clip of the ambulance that took me to the hospital, it was unsettling to know behind those doors I was fighting for my life. Every time I hear an ambulance siren, I freeze, why? because I fear that behind those sirens is death and the aftermath that follows. Did Kush thank Sonia for saving his life? No, he hasn’t from what I have seen.
I would like to see people acting funny around Kush, not knowing what to say to him or how to treat him. I would have liked to see Kush breakdown, or get emotional walking the Square where he collapsed, hitting home that his life had nearly ended. After an event, people want to treat you with kid gloves, don’t know what to say to you.

For me it got very suffocating, early on I was told that I should tell people my condition, for a few years my life was Brugada and not Joseph Richard Tanner. I would return to work 5 weeks after my cardiac arrest, I went back to work because I felt that I had too, the support was very limited at the time.
I would later find out that I could have had up to 6 months off work paid full but no-one tells you these things. On one hand it was a good thing because I wanted everything to go back to normal, but on the other hand, I needed time to process what had happened to me.

Kush then informs Stacey that baby Arthur may have Brugada because it is an inherited condition, they visit the consultant that informs them they will have to see a paediatric specialist which will take a week.
Stacey starts losing it, not wanting to wait a week, she wants to see someone now. Which in truth would mirror any mother or father in this situation. In reality, it can take months to get an appointment with a paediatric specialist, though the NHS will try to rush through in a situation similar to Kush. Brugada is hard to pick up on ECG and consultants are unlikely to perform an Ajmaline challenge on a child, so the best possible way to find out is genetic testing. With Carmel having Brugada and Kush it will help identify the gene, but it doesn’t mean they will, to get a result from genetic testing can take up to 6 months to a year.

If they can’t find the Brugada gene, unless baby Arthur show symptoms they won’t be able to do anything for him until his young adulthood, with a check-up every 6 months to a year. This could lead to a very interesting storyline for Stacey and the child that plays baby Arthur, but sadly I fear this will be ended and forgotten within a few weeks.

A month after being released from hospital my cousin Lenny passed away after drowning trying to save someone in a canal. I feared that maybe he hadn’t drowned, and maybe that he had a cardiac arrest when jumping in. A few years later his sister Marcelle was running a marathon, and posted about feeling sick and needed to rest after the race. I contacted her with my concerns and she dismissed them, personally, if I was her I would want to get checked out, not just for her own well-being but her kids. Only a few people within my family have been checked, some of these people nothing more than an ECG. The one fear that I live with every day is that one of my cousins, my nephews, or child within my family drops dead because of this disease and the amount of guilt I will feel for not pushing hard enough for them to get tested.

Throughout the last 9 years, I have met many families with various heart conditions, these conditions can break up families, bring them together. Family members that want to bury their head in the sand, at times it can be a never-ending battle. These conditions can affect us on so many levels if a driver you are unable to drive for 6 months after a cardiac arrest. If you receive appropriate shock therapy from the ICD you’re unable to drive for 3-6 months, if you receive inappropriate therapy you may be able to drive within a week. The impact of not being able to drive effects, people, day to day lives which can include their jobs. When you go holiday you have to make sure that your travel insurance covers your condition, with that in mind what will the treatment be like abroad and being able to explain. There are certain things that having Brugada I have to be cautious of like not eating heavy meals at night, not drinking too much, certain drugs people with Brugada should avoid, reminding your GP that you require a flu jab every year because high fever and sickness can be dangerous.

I’ve heard the horror stories of people suffering from inappropriate shock from their device. Thankfully I haven’t received shock therapy appropriately or inappropriate since the implantation of my device.
I had to get my device replaced after 3 years due to a low battery, they are meant to last up to 10 years so that was a disappointing setback. Will Kush or his family suffer any setbacks after their diagnosis and bring it to the reality that life isn’t that easy.

This condition changed me, after many years and personal battles I have achieved so much, like my counselling qualifications and training to be a Personal Trainer. After being diagnosed with Brugada I was told that I would never run a marathon again, well in 2015 I completed the Brighton Marathon in a faster time than my London marathon in 2007.

There is another fear that lurks in the back of my mind, and that is that I have been lucky not to suffer further with this condition. Yes, I had a cardiac arrest, but I’m lucky to have not needed my device since, I’m lucky that Brugada doesn’t affect me in other ways like fainting spells, or heart palpitations, that I’m somewhat able to live a normal life, but one day that may change and I’m not sure how I will deal with that.

People have said to me many times in the past that I’m an inspiration to other people, I’m not, I’m just me and I’m very fortunate to have survived a cardiac arrest… Fiction vs reality of Brugada, this is my reality.

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