Zenia Selby- earlier diagnosed with WPW

Z well

I was out on a 5k run when suddenly my heart started beating several times faster than it should have been. I stopped, sat down, breathed deeply, but nothing would stop it. I was in the middle of a wood when it happened, exactly halfway through the run and so about 2.5k away from home. After about 10 minutes of resting, I made my way home, but even 20 minutes later when I got there my heart hadn’t stopped racing. My housemate told me to call 111; they told me to call 999. I was rushed to hospital, but no one could find anything wrong with me – by the time the ambulance got to my house, the palpitations had stopped. But they had been ongoing for about 40 minutes.

That sparked a whole series of hospital trips, ECGs and even an echo, all through my final year of university, when my dissertation was due and finals were looming. Two days before my Latin exam and a week before I had to move to London for a new job I was finally diagnosed with Wolff-Parkinson-White syndrome. My treatment was moved to London and there followed several more ECGs and hospital trips. During this time, I was very grateful for the support of CRY.

I was told that my condition was relatively mild, but would have to be dealt with. I had two options: to be on beta blockers for the rest of my life, which would keep me safe from the risk of further heart attacks, but would mean I could never run in the same way again. The second option was a catheter ablation, where they would simply cauterise the extra electrical signal in my heart that was causing all the palpitations. Keen to fix the problem, and keen to get back into training, I opted for the ablation. The cardiologists explained to me the minimal risks of the operation, and reassured me that they thought the extra signal was on the other side of my heart from the normal electrical centre, so the risks of damage to my heart’s normal functions was even more minimal.

I waited a few months for the operation date, but it finally arrived, and I made sure that I went to my favourite comedian’s show the night before, so that I was fully relaxed (for any other comedy fans out there, it was James Acaster – he really is incredible!).

Z illI ended up being in surgery for three hours, as they opened arteries in my groin to insert the catheter tubes that would lead to my heart. They then set off my palpitations, so that they could identify where exactly the extra electrical signal was (which, to be perfectly honest, was terrifying!). After an hour the surgeon came and told me that it was exactly where they thought it was, and they would ablate it. I was given a few extra doses of morphine, and after another hour or so (I lost track of time…) my heart was completely normal. They kept me in hospital for a further three hours, just for observation, so that they could be sure the bleeding in my groin had stopped.

I was very lucky to have the support of my mother, my friends, and my boyfriend all the way through the procedure. I was completely overwhelmed by the number of supportive messages I received, and the amount of cake that I was brought!

If I could draw a top three tips from my experience for anyone else going through the same thing, I would say:

  1. Don’t worry too much. The risks are minimal. Stay positive, and trust the doctors – they will take very good care of you.
  2. Equally, don’t downplay it too much. As much for my own peace of mind as for others, I dismissed the operation as nothing serious. It is serious. It is scary. Make sure you have a loved one with you.
  3. Accept the sedative they offer you! Trust me, you will need it.

Watch her video below of how she felt before and after her ablation.

Alessandro Miccoli

Alessandro Miccoli wrote his story to be included in the myheart booklet which was launched in November, 2013.

It wasn’t until the end of 2012 that a journalist first introduced me to the charity CRY. I quickly became aware of the amazing work they do in helping promote awareness of heart conditions in the young.

Since my early teens, heart conditions have affected my family in many ways. First, losing my grandfather to a heart attack, then shortly after my father was diagnosed with atrial fibrillation. At the time it didn’t occur to me that I may be destined for the same fate. I guess I was just like every other healthy young person, oblivious to the fact that heart conditions are not just limited to older people – they can affect anyone, young or old.

My siblings and I are in a band and we were playing a gig in Birmingham. Half way through the set I started experiencing severe chest pains. I became extremely light headed and my heart was racing. It felt like it was about to explode. To this day I still don’t know how I managed to make it to the end of the song (must have sounded terrible) but fainting in front of all those people was not an option for me.

In hindsight this was a very stupid thing to do, as I didn’t realise my life was in the balance! I collapsed as soon as I walked off stage and emergency services took half an hour to get to me (even though the closest hospital was only 5 minutes down the road). Their response for the delay was, “A young 25 year old with chest pains, how bad could it be”! My heart rate was by now at 235-250 BPM and at any point I could have dropped down dead. When I eventually got to the hospital I was rushed into A&E and they tried every drug they could to get my heart rate down, but nothing was working. Finding myself in intensive care and drifting in and out of consciousness, fear and panic had firmly set in – I thought my time was up!

They sedated me and then used defibrillation to shock my heart back into a normal rhythm. I woke a few hours later bursting into tears as the feeling of relief was immense. I was so happy to be alive. The cardiologist at Birmingham City Hospital diagnosed me with Wolff-Parkinson-White syndrome (WPW) in its most aggressive form, explaining to me that an ablation procedure was the only way to rectify the problem. The news of this diagnosis at first hit me hard. I felt so many emotions all at once – fear, anger, frustration. I was confused, uncertain about my future and constantly asking myself “Why me??!!”

The cardiologist prescribed me with flecanide acetate, which is a drug to maintain a steady heart rate, until the date of surgery. I waited 3 long months to have the procedure and within that time I battled both with coming to terms mentally and physically with my condition and the fear of having my operation which I referred to as D-Day (later finding out that my operation fell on exactly the same date as the D-Day landings). I underwent the surgery in June 2009 at the Queen Elizabeth Hospital in Birmingham and when I awoke was so relieved and happy. However, after a few weeks my symptoms returned. Later, an ECG revealed that the extra pathways that had been burnt out in the procedure had healed when they weren’t supposed to, making the operation unsuccessful. I was devastated.

I then underwent a 2nd ablation a month or so later. I experienced a few heartbeat skips now and again but nothing major, assuming it was just my heart settling down after the surgery; but then one morning I woke with a heart rate of 220 BPM and was again rushed to A&E. They tried every drug they could, just like before, to get my heart rate down but nothing worked and again they had to use defibrillation to shock my heart back to a normal rhythm. Waking for the second time from a major ordeal I simply couldn’t believe my ‘luck’, I was still alive! Tears of joy and relief followed.

By this time it was 2011. I had been dealing with ‘this’ for more than 2 years, undergoing my 3rd ablation, which would turn out to be my most extensive and aggressive procedure yet. At this point, the situation started to take its toll on me mentally and physically. The side effects from the drugs to maintain my heart rate started to become more apparent. My dosage increased and so did my anxiety attacks. The constant fear of dying in my sleep was always present.

The 3rd ablation was only partially successful – they managed to suppress the WPW so that it wasn’t life threatening. However, whether it was due to the aggressive heart procedures or an undetected condition, I was later diagnosed with persistent atrial fibrillation. Undergoing a 4th ablation procedure was the only way to cure the condition. My symptoms were unbearable as there isn’t really any drug out there that can regulate severe and persistent forms of atrial fibrillation. The 4th ablation procedure was mostly successful, I no longer experience chronic symptoms of atrial fibrillation or WPW and just the occasional skip now and again. I’m still awaiting my last appointment from my cardiologist to finally get the all clear!

The screening carried out by CRY for young people is imperative in detecting and thereby preventing an otherwise undiagnosed heart condition reaching its fatal conclusion. Having heard of the reluctance by some consultants to promote the screening programme CRY initiated, saying young people would not be able to cope with the diagnosis that might result, I would argue the opposite. Young people, with appropriate support, are more adept at coping with the situation, dealing with the diagnosis and having a positive / optimistic outlook.

Young people don’t carry life’s excess baggage. Having spent a lot of time in consultation and on hospital wards, I quickly became aware how the ‘older generation’ found it more difficult to cope and come to terms with their condition. Whether it was at the diagnostic stage, pre- or post-surgery or even just getting their INR level checked at a warfarin clinic. It would be very true to say this experience has taught me not to take anything for granted and to really appreciate family and friends. For me it all boiled down to two simple choices, cry or laugh. I chose the latter, accepting my condition and carrying on with my life – and not letting this potentially depressing and life threatening condition dominate my life.

This was the only way for me and my family to remain sane. To put it all into perspective, I am always humble and conscious of the fact that I have been allowed a second bite at life. I would have been so grateful, had I known about the screening programme, to have caught my condition in its early stages. Looking back, it would have made sense to get myself tested, since there is a history of heart conditions that runs in my family. It would have given me time to prepare, educate myself on my condition and be aware and save myself a lot of the hardship and ‘close calls’ that I endured. When I was eventually diagnosed with the heart condition, the rest of my family were screened, resulting in my twin brother also being diagnosed with WPW and atrial fibrillation.

My siblings and I look forward to the future and working closely with CRY to help raise as much awareness as possible to save lives and reduce the ordeal young people might be faced with under similar situations to mine. We want to bring awareness to the public that heart conditions are not exclusive to the older generation but can affect all ages.

Watch CRY’s myheart cardiologist talk about the reasons you might have to repeat an ablation below.

  • Alessandro Miccoli

Mallory Brand

Mallory Brand wrote her story to be included in the myheart booklet which was launched in November, 2013.

Mallory author

I discovered I had Wolff-Parkinson-White (WPW) syndrome by chance. I manage events and exhibitions for a marketing agency in London. In July 2012, I was flying to Boston when I felt unwell during the flight, collapsed and after receiving oxygen from the cabin crew was told to see a doctor once we had landed.

The medical centre recommended by my hotel asked about my general health and I told them I had experienced palpitations my whole life. They performed an ECG – luckily there was very little waiting around – and WPW was diagnosed. “Shit” was the first thing that came to mind! But then a sense of relief that the fast, irregular heartbeat I had been told was ‘safe’ for so long, actually was something. Admittedly, the next few hours weren’t fun. I was in Boston with colleagues, so couldn’t get the hugs from family or my boyfriend that I craved. Instead I called them, arranging to fly home early to visit my doctor.

My work colleagues bought me some delicious cocktails to take my mind off it and my flight home was upgraded to business class. I spent the entire flight back sipping champagne – every cloud has a silver lining! I began researching WPW on the internet, learning that Meat Loaf, Jessie J and Marilyn Manson were all sufferers. I figured if the ‘Bat Out of Hell’ could deal with it, then I certainly could!

In the UK, doctors confirmed my diagnosis and referred me to the CRY Centre for Inherited Cardiac Conditions and Sports Cardiology at St. George’s Hospital in Tooting, London. Over the next 2 months they performed more tests and scans, checking I didn’t have any further abnormalities. They then decided that because I had been experiencing symptoms my whole life, I should skip the drugs and go straight on the waiting list for an electrical ablation procedure.

I carried on as normal, although it was difficult at times having the diagnosis hanging over me and waiting for a date for my operation. My boyfriend had the patience of a saint and always put on a Patrick Swayze movie or cooked me a big bowl of cheesy pasta if I was feeling a bit down. I worked from my London office and exercised little in those months (a valid excuse for not being a gym bunny). I was anxious about my December holiday – in Australia, to meet my boyfriend’s family – so kept chasing the hospital until they confirmed my surgery date in November.

Before surgery I contacted CRY, asking to speak to someone who had been through the same experience as me and was put in contact with Chris Smith, who had been ablated a few years earlier after being diagnosed with WPW by CRY. It was incredibly useful, speaking to someone my age that had gone through the same feelings I was having. Was it weird that I was worrying about the scar I’d have? What were the nurses like? Did they mind if you swore? How long was it before you were walking around like normal? Chris was really candid and it made me realise the procedure wasn’t going to be easy but gave me a realistic expectation of what was going to happen.

The nurse testing me for my pre-op assessment told me WPW was a relatively new condition in the medical world. It got diagnosed about 20 years ago, which explained why doctors used to dismiss my palpitations as nothing to worry about.

The day before my operation I was so nervous. I watched a Christmas movie and baked a pie to keep my mind from it! I barely slept that night, getting up early to go to the hospital with my boyfriend. I was put on a day ward which was specifically for people having the same or similar types of procedure to mine. Being 25 I was the youngest, the next youngest person there was in her 50’s but everyone was really friendly and the nurses were super lovely.

I was first into surgery so didn’t have too much time to worry. I told the doctor in theatre that I was really nervous and wanted lots of drugs to calm me down! They happily obliged, setting me at ease and updating me throughout the procedure about what was going on. When they realised the abnormality was in a more dangerous place than they had originally thought, they needed to wait for the senior cardiologist to complete the next stage of the operation, which was definitely worse than I thought it would be. It took double the 2 hours that they had anticipated. I spent the day recovering on the ward with my boyfriend reading to me and forcing me to drink the many jugs of water the nurses kept leaving for me! I was allowed home that evening and spent the next week recovering from home.

Recovering was harder than I had anticipated. Because I knew I would be awake throughout and going home the same day, I had assumed it would be easy and I would be up and about in no time. Actually that wasn’t the case at all. The scar in my groin was painful but bearable, I was expecting that. However, I hadn’t realised that my heart had been ‘reset’ and would need time to recover. For 2 weeks I had a lot of tightness in my chest, getting out of breath easily and being uncomfortable sleeping on my side. I worried something was wrong and was relieved to learn this was normal and would continue for a few weeks, which put my mind at rest.

I needed 3 weeks off work. Mum stayed with me which was nice – a bit like when you were off school as a child! I found walking a short distance felt like I had run a marathon, so it took me a while to return to normal. However a month later, I jetted off to Australia on holiday with no issues and had the best time ever! Although experiencing the odd weird heartbeat, it was really strange not getting palpitations and out of breath like before when I exercised. Now I have no excuse not to exercise any more!

St. George’s gave me the all clear – amazing! I didn’t realise the complete and utter relief and happiness I would feel, knowing I had overcome and got rid of this little glitch. Heart 2.0 is a success! My cardiologist advised I would experience weird heartbeats for a year which was all part of the heart’s natural healing process.

Being diagnosed has put things into perspective for me. Life is short. I wish that I had gone to the doctors before, instead of being stubborn and ultimately putting my life at risk over the years. It’s made me realise that your health should be the most important thing to you and it also made me realise how gorgeous the people around me are – my boyfriend making me copious amounts of pasta; my BFF putting up Christmas decorations on the day I came home from the operation; and my mum coming to stay and watching crap telly all day with me.

When I read that Alison started CRY in 1995 and many consultants told her that she should not be starting a screening programme to identify young people at risk, because young people could never cope with a diagnosis – I thought “What complete bollocks!” Just because we are ‘young’ it doesn’t mean that we are incapable of dealing with something this serious.

Everyone I have spoken to about this has said how strong and brave myself and fellow young people have been in this situation, but for me that almost seems irrelevant. You get on with it because you have to. You just do it.

  • Mallory author

James Bailey

James Bailey wrote his story to be included in the myheart booklet which was launched in November, 2013.

James author

I was pumped up for the game. The adrenaline was rushing through my body. I couldn’t wait for kick-off but as soon as the whistle blew, my body reacted in a way it had never done before. My heart beating faster than it should have done, racing so fast I couldn’t count the beats. I had barely stretched my legs and sensed something was wrong. As the game progressed my body seemed to deteriorate. My vision became blurred; I struggled to chase the football down; my heart racing frantically during the second half. I didn’t score; we didn’t win and this incident was put down to a ‘panic attack’. I was lucky this incident didn’t cost me my life.

Two weeks later, the CRY screening team visited my school, QEH in Bristol. Even before the aforementioned incident I had returned my screening appointment form – which was more my parents’ choice than mine, as they wanted me to be tested. I did not expect anything to be wrong. The ECG was quick and simple. In fact too quick for my liking; I would return to learning about Desiderius Erasmus sooner than envisaged. However, my friend was sent back to class whilst I was asked to stay behind. I presumed, naively, there had been an error with the processing of my results and they had to redo it. No problem. Yet I quickly sensed that was not the issue as the doctor sat me down.

I’m not sure how you are meant to take bad news; it is not something you really want much practice in. Yet I don’t think my reaction to “You have Wolff-Parkinson-White syndrome” was the norm – I burst out laughing. Perhaps the combination of shock, irony and total disbelief caused this reaction to what was clearly not a laughing matter. My smile quickly faded as I realised the implications and it was very difficult heading back to class afterwards, seeing everyone who was ‘normal’ whereas I was the one who wasn’t.

Disbelief was followed by not wanting to know. I played football daily; I didn’t want to stop playing sport. I didn’t want to have to change anything. At 17, I was in the middle of my AS-Level year and had enough stress without thinking about heart syndromes. Why couldn’t I just forget I had ever had the ECG? Why couldn’t I just ignore the results? The revelation of the diagnosis was equally as surprising, shocking and scary for my family. As hard as it was for me to deal with it, likewise it was not something that they expected to encounter with me being so fit and active.

The cardiologist at Bristol Royal Infirmary tried explaining Wolff-Parkinson-White syndrome (WPW). I still don’t understand what an ‘atrioventricular reciprocating tachycardia’ is but the original diagnosis was confi rmed and he put me on medication. I had gone from taking the occasional paracetemol to having my own pill box reminding me to take my daily dosage of flecainide acetate, which made me sick. Having to stop the car to vomit en route to school was one of the more glamorous episodes of this period.

I felt in a significantly worse position than before CRY visited my school – taking daily medication which caused nausea and having to stop playing sport. However, I was reassured that the catheter ablation operation promised almost a 100% success rate and under general anaesthetic I would be oblivious to what was going on. Surgery coincided with work experience week, so whilst my friends were visiting hospitals to learn the tricks of the trade, I was visiting as a patient.

I remember receiving the bad news that not only had the operation been unsuccessful but there was no alternative. The surgeon had tried for 7 hours. It appeared I would have to live with WPW for life. This was without a doubt my lowest point; to say I was distraught was an understatement. I reverted to wanting to forget about it and the next day attended my school’s Sports Day despite being in tremendous pain, just to erase the problem from my mind.

As my stomach struggled with the flecainide acetate my surgeon gave me the news that he was keen to try a new approach – but I was wary. I couldn’t deal with another operation failing, plus this time I would be having a local anaesthetic.

I was stunned when the surgeon advised me I could listen to music on my iPod throughout the procedure and decided only the “Rocky” soundtrack would do. So as I lay on the operating bed ready to have heart surgery, I had the iconic “Gonna Fly Now” echoing in my ears and this time the surgery was successful! Returning home in a little pain later that day, I addressed my A-Level studies soon after.

Eight months after my diagnosis, the ordeal was over. That was it, I was ‘cured’. Having thought I would only have a coaching role in the coming football season, I returned to playing. Though I may not have won the Golden Boot, nor been able to go on tour to Holland, I knew I would be fi t for the following season and able to play to my heart’s content (that’s the one and only pun, I promise). After months of medication, two operations and much stress, the fact that everything was back to normal seemed more than strange. I had left hospital and the problem had just vanished. The slight scar from the operation had all but faded too, as if it had never happened.

It took time to stop worrying whenever my heart rate rose, even slightly. As a precaution I attended another CRY screening incognito – disguising my face from the one pictured in the CRY magazine, in case they recognised me! Fortunately, my heart really was fine and continues to be to this day. Since my experience with CRY, I have been staggered to read the multitude of cases reported in the press about young people who were less lucky than me. As I flick through the CRY magazines it is incredibly upsetting to see the vast majority of stories in memoriam. It is now that I see how fortunate I really was. There were times when I wished CRY had never visited my school, I had never signed up for the screening and I had never found out. However, without CRY, the reality is that I could well have been one of those sad stories; and through my experience my friends have also become more aware of cardiac problems.

When Alison started CRY in 1995, she faced opposition from consultants who told her she should not be starting a screening programme, as young people could never cope with a diagnosis. Realistically, receiving a diagnosis is hard, young or old. Learning you have a medical problem is always unwelcome news, yet without a diagnosis you cannot resolve the underlying cause. Those consultants with the negative view would be more credible if the diagnosis was for an incurable, untreatable illness. However, cardiac conditions that affect fit and healthy young people are treatable once diagnosed. Yes, I found the news hard to take and things did not go smoothly, but then life so rarely seems to. I haven’t sugar-coated my experience. It certainly wasn’t an easy time and there were both mental and physical obstacles to clear along the way.

Ultimately, whilst being diagnosed may cause changes to your life, it potentially saves your life. This is why I will always be thankful to CRY and continue to support their work. Although WPW is not thought to be genetic, both my sister and my mum were subsequently screened by CRY. CRY now returns annually to my former school.

Should any pupil find themselves diagnosed, I hope they too will realise they are in fact one of the lucky ones who found out before it was too late.

  • James author

Chris Smith

Living with Wolff-Parkinson-White syndrome

I underwent a catheter ablation procedure in November 2009 after being diagnosed with Wolff-Parkinson-White (WPW) syndrome in May 2009 following a CRY screening at Myerscough College in March 2009. I was a fit and healthy swimmer in my final year at school, I trained at my club 5 times a week and up until 2 weeks before the screening I had not experienced any symptoms at all. My first inkling that anything could be wrong with me happened during a training session where I experienced a rapid heart rate and chest pain, this was a frightening experience. I didn’t experience any other symptoms until after the screening. I went along to the screening not expecting to be told anything untoward. I was surprised to be called in with my Mum to see the cardiologist Dr Michael Papadakis and told there was an abnormality with my ECG, I was told it would be sent to London for Professor Sanjay Sharma to look at. I was then invited down to London for further tests and following these tests I was diagnosed with WPW.

20x30-SALA0419 Chris SmithBy the time I went to London in May for the tests I was experiencing more and more symptoms. These increased in frequency and severity that they were affecting my everyday life. I was having symptoms more and more often up to four or five times a week and not only when exercising I was having episodes when sitting at my desk at school. When Professor Sharma told me the diagnosis he discussed treatment options with me and my parents and recommended catheter ablation as he felt drug treatment would not be very suitable for me as the drugs would affect my swimming. I decided that the catheter ablation would hopefully offer me a permanent cure.

I was referred to Dr. Murgatroyd at King’s College Hospital London where he agreed to perform the ablation, I went in for the procedure on the 5th November 2009. It felt strange to be the youngest person on the ward knowing that there was something wrong with my heart; I would be lying if I said I wasn’t scared at the thought of what was going to happen to me. The doctors and nurses were very kind at putting my mind to rest. The procedure felt very strange and a little uncomfortable. It didn’t feel right being awake but less than 2 hours later I was on the ward. I was told to rest in the hospital bed for a couple of hours then I was brought something to eat and drink. I was then given an ECG which looked to be normal and was told he was 90% positive on a cure. I was then discharged from the hospital and allowed to go back to our hotel for an overnight stay. I was told to take things easy for a few days and apart from some bruising in my groin I felt fine and relieved it was all over.

I have now been discharged from the hospital and my WPW is completely cured. I have been symptom free for almost two years now. I am now back into swimming and have started open water swimming which I now use to raise money and awareness for CRY through sponsorship. I will be forever grateful to CRY for all the help and support they have given me and for saving my life. I am a very lucky young man, thanks to CRY. If anyone is told they need an ablation, I would say to them don’t be afraid and have it done. It will change your life, it did for me.

Louise Bees

Living with Wolff-Parkinson-White syndrome

Hi, I got diagnosed with Wolff-Parkinson-White syndrome (WPW) after nearly dying giving birth to my son.

I had suffered with palpitations for years, but nothing was done about it. Then, whilst I was pregnant, the attacks became more frequent and when I told my doctor I was given a 24-hour heart monitor to wear. After wearing the monitor, I was told that I was fine, so I just carried on.

27 hours into labour, my heart started racing. I couldn’t breathe and my lungs started filling with fluid. I was rushed for an emergency c-section and my son had to be resuscitated as his heartbeat had dropped because there wasn’t any oxygen getting to him.

The next thing I knew, I was waking up in intensive care on a ventilator, being told I had this condition WPW. What a shock that was.

I was put on verapamil for 3 months, and then I had a catheter ablation – which I might add was very painful.

That was 3 and a half years ago, I have been fine since and so is my son.

Ian Tunnell

Living with Wolff Parkinson White syndrome

I would like to recount the circumstances surrounding my son’s experience of Wolff Parkinson White syndrome (WPW) in the hope that other young people, particularly students, will take heed and (a) register with a GP, and (b) go to see them when they’re not well.

We had taken Ian back to Cambridge University the week before, where he was about to commence his post-grad year (PGCE) to train to become a teacher and everything went well.

He had new accommodation and was very pleased with his room. He had been attending lectures as usual and was looking forward to his forthcoming school placement. We visited him on Sunday as I was flying out from Stansted on Monday morning for a weeks cycling holiday and he was his usual bubbly self.

He went to a lecture on Monday around lunchtime and mentioned to a friend, Jenny, that his heart was beating in an odd way, sort of going in 3’s, but was not in any degree of pain. She insisted that he go see the College nurse and accompanied him there. The nurse thought it was odd too and recommended that he present at his GP’s surgery. The nurse, Francis, thought it was best that he got there quickly so instead of walking, she arranged for them to go there in a cab (best £5 they’ve ever spent!)

Ian saw the GP, who immediately sent him downstairs to have an ECG as they have the facilities at the surgery. He said to Jenny as he went in “don’t worry, I’ll be fine and out in a few minutes”. Whilst wired to the ECG machine, his max heart rate recorded was 310 bpm – and then a flat line……it just stopped.

The staff were experienced in cardiac massage and resuscitation techniques, including the use of a defibrillator, and brought him back to life. An ambulance was called and he was taken to Addenbrookes hospital, accompanied by his friend Jenny.

There, they used all the techniques at their disposal to ensure that he came through this episode, using a “freezing blanket” to slow his metabolism down and reduce any risk of damage to organs, then monitored his progress 24 hours a day and arranged for an ablation at Papworth Hospital the following week, which was successful.

He had no previous history of any heart irregularities and had he decided to go and lie down instead of going to the nurse etc, he would have been a victim of sudden adult death syndrome (SADS).

There were a chain of events here which saved his life –

  • Jenny insisting that he see the college nurse
  • Going to the GP
  • Having resuscitation equipment and personnel at the surgery
  • Care at Addenbrookes
  • Surgery at Papworth

This is a parent’s worst nightmare, a lump still comes to my throat when I think how close to losing him we were and I was in the South of France enjoying myself at the time.

He is now back on his teaching course and catching up with what he has missed.

Paul Tunnell (Father)

Francesca Maretic

Living with Wolff Parkinson White syndrome

My name is Fran and I’m an average girl except for the fact that at the moment I have Wolff Parkinson White syndrome (WPW). WPW means I have an extra pathway in my heart and sometimes my heart will beat really fast because of this.

The first time I found out about my condition was on my Prom night (Friday 13th – talk about unlucky!). My friend and I got ready and we were really excited! We left her house and then we had to face a huge hill, in high heels!

Anyway, we met up with our dates and we walked to the Prom. When we got there I felt fine – we all started dancing and having some food and drink and we were having a great time! Then about ten minutes before the end of Prom I felt so tired! I couldn’t understand why. Everyone was calling me over to dance and I did, but I was shouting “I’M SOOO TIRED!!” By then it was the end of Prom. I said goodbye to everyone and set off to my mum’s car to go home. I got in the car and that feeling came back, “Mum, I’m sooo tired. I have to go to sleep when i get home.” “Why, what’s wrong?” My mum said. “My heart, it feels weird – it feels as if its going 150 mph!” – And wow, I wasn’t wrong.

I got home and just lay on the sofa. My mum knew something was wrong so she called the doctor, who called the ambulance! I was so scared. I had never been in an ambulance before – what were they going to do to me?! Then they turned up. “Hi Francesca, what’s wrong? How are you feeling?” said the paramedic. “I just feel so tired and my heart feels like its going really fast!”

They took my pulse and listened to my heart. “Darn thing, why wont you work? Silly cheap NHS stuff!” said the first paramedic. There was another medic doing something else, taking my pulse. “No that’s right what your hearing!” “OK we need to take her to hospital straight away!”

My mum had no time to prepare, she was running around trying to get her things together. I went into the ambulance and on the way to the hospital there was a traffic jam. Because of the ambulance everyone was staring at me – it was like a thousand eyes were watching me.

When we got there the nurses wired me up and then I saw what my pulse was 250 per minute! I couldn’t believe it – I knew something was wrong as I did some work in school and knew my heart was supposed to go at 70 per minute. There were two people trying to inject each hand. One of them got the needle in but smashed a bottle by knocking over the trolley. The other couldn’t find a vein to put the needle into – it took him three times to get it right! Then I felt the drug go into me and it felt like I was about to pass out, except I didn’t and my heart went back to normal! I was so relieved. All I can remember after that was being in a bed falling to sleep.

Since then I have been on tablets called atenalol and they make me really sleepy. I have been feeling so ill lately, but I will soon be having an operation so it will all be over! And I’ve got my great friends and family helping me along the way!

Jenny Justice

Living with Wolff Parkinson White syndrome

I had Wolff-Parkinson-White syndrome (WPW) when I was a child. I remember waking up because my heart would start beating very rapidly and for about 2 or 3 years my parents thought I was exaggerating when I told them my heart was beating fast.

As I grew into a young teen I became very active in sports and found my WPW to be getting worse and worse.

My father finally took me to the hospital one day because I had a three-day long episode and my body was starting to turn blue. It was then I was diagnosed and put on medication.

Then within about a year I was in about eighth grade. I became even more active in sports and I started to black out in the middle of running exercises and such.

On a regular visit with my cardiologist I told him what I was going through and how frustrating it was for me. After we finished the appointment he basically told my father and I that the next time I had an episode where I blacked out like I had been doing, I could easily slip into a coma and not come out.

It was then we decided to have the ablation done. I was out of the hospital the next day and have not had any sort of episode since. It was pretty much one of the best decisions I have ever made.

Ellie Brogan

Living with Wolff Parkinson White syndrome

My name is Ellie Brogan, I am 15 years old and suffer from Wolff Parkinson White syndrome (WPW).

I really want to raise money for your charity and thought I would start by telling you my story and the reason why I want to raise money.

When I was 7 years old, I was experiencing heart palpitations but after a visit to the doctor they could not find anything wrong and all was well for 8 years!

Then, in March 2008 (aged 14), I went back to the doctors with the same problem and was admitted to hospital. I had ECGs, blood tests, ECHOs and X-rays. It was the scariest day of my life for me and my parents as we didn’t know what was wrong.

I was diagnosed with Wolfe Parkinson White syndrome and had to stay in hospital to be monitored. After this I had regular visits to Alder Hey Children’s Hospital in Liverpool and throughout the course of my many visits, was fitted with various heart monitors and a cardio call to take home with me.

I was going to have to undergo a cardiac ablation and thus was referred to Broadgreen Heart and Chest hospital in Liverpool to see a different consultant.

By this time I was quite used to hospitals and all that was involved and after many more tests and observations I received fantastic news – the WPW was not bad enough to have to undergo the procedure.

So, although I still have WPW and experience palpitations, I am really reassured knowing that they are nothing to worry about.

I still have regular visits to Alder Hey Children’s Hospital but I know it is nothing to worry about.