Ablation and the Road to recovery

#TEDICATED – CHAPTER 3 –

CARDIAC ABLATION AND

THE ROAD TO RECOVERY

It has been some 8 months since my diagnosis of Wolff-Parkinson-White Syndrome. (see previous post) A lot has happened in this time, which have put a temporary hold on a few activities. This post is about my Catheter Ablation treatment, how it went and what happens next.

My already hectic family life leaves me little in the way of spare hours to formally dedicated to shooting and editing video material. I have used my free moments reading and learning techniques which I can put into practice in my next projects.

THE WAITING GAME

Wolff-Parkinson-White syndrome is a common heart condition which affects 1 in 1000 patients. It is congenital and means that sufferers have an additional electrical pathway in the heart which can cause palpitations and erratic heartbeats.

Following my diagnosis, a daily dose of 2.5 mg Bisoprolol was prescribed to slow my heart rate down.

This was to prevent any further episodes of palpitations. I suffered from overwhelming tiredness while taking these. I most often felt the effects coming home from work or in the early afternoons. I felt like I has no energy to do anything other than what was absolutely necessary. The tablets did work though, I could feel the odd occasion where the heart would start to beat faster, but the beta-blockers meant that the heart actually stayed at a normal rhythm. I remember a month or so ago, there were 3 episodes in one week.

Initially, I was told that treatment time would usually be around 2-3 months. I was hoping to be successfully “cured” before Christmas of 2017. It was agreed the best course of action was a Catheter Ablation procedure.

I had a follow up appointment in December in Bristol Royal Infirmary where the diagnosis was confirmed following a further ECG screening. I was then informed I could expect to wait a further 4-5 months. This coincided with the birth of our second child, Arlo Finn. To allow some time for him to settle in at home, the date was put back to 13th June. I was advised to finish taking my beta-blockers 5 days before. This was to allow the heart return to its normal state before treatment.

TREATMENT TIME

On the morning of 13th June, I made my way to Bristol Royal Infirmary. I checked in to the cardiology ward. Fairly quickly after I arrived, I was called in to the second internal waiting room while they prepared a private room in the ward for recovery.

I was shown to a small curtained room in the ward and presented with my hospital attire to wear for the day. This included a hospital gown, some gripped red socks and some rather fetching semi transparent disposable pants. My normal day clothes were put in a bag to be locked away securely.

After a short ECG, blood pressure test and a brief questionnaire, a cannula was fitted to my wrist. I was told how the procedure would be undertaken and told I was next in line. A few minutes later, the room was ready and I made my way to the operating theatre.

WHAT IS ABLATION?

The Catheter Ablation is a non invasive procedure. The Ablation is conducted under local anaesthetic and sedation. A tube is inserted into the groin and fed up through the artery towards the heart. The surgeons will use a form of dye and x-ray to track any irregularities which cause the arrythmia or palpitations. Once they have found the problem area, a high energy laser is used to burn/scar the abnormality. Scar tissue forms and therefore nullifies the issue. For Wolff-Parkinson-white syndrome (WPW) the success rate is 95% but does carry a low risk of complications such as;

Bleeding,
infection,
Damage to normal pathways leading to requirement of pacemaker
Stroke

The mortality rate for this procedure is believed to be <1:2000.

GOING UNDER

I was prewarned that I would be walking into a cold room, and they were indeed correct, the room was very cold. Given the limited attire I had on at this time, I was particularly chilly. I was ushered towards the bed and hopped up onto it to get comfy. Looking around the room, I could see a very large monitor to my left with a host of readings. On each side of the bed was an arm rest with cool, gel-like substance at the bottom. After a few last minute checks, a breathing tube was placed below my nose. It was time to get started.

I was told there may be some beeps and alarms that may go off throughout the procedure and not to worry as this is normal. The doctors asked me to lie still and I did my best to do so. If I’m honest, I think I started to get a little nervous and fidgety at this point. I don’t remember too much after that. I believe the sedative had sent me to sleep quite quickly.

I can recall a few moments during the procedure where I was aware beeping and alarms. My heartbeat fluttered on occasion. I believe they had triggered palpitations as part of the process. I could feel it happening, shortly afterwards, I felt a real tightening on my heart, a squeeze and a blast of pain. I let out a groan and I heard the surgeon say;

“It’s alright, perfectly normal, we’re working on it”

I felt some more pain and I think I remember hearing

“We’re almost finished”

The next thing I remember, I was coming round and they’d told me they’d finished. After I woke up a bit more, they wheeled me through to my ward room to recover. They’d been working on me for around 2 hours.

COMING ROUND

I later learned that I had actually slept through most of the procedure, but woke up during the actual ablation. This explained the pain I could feel, my goodness me, it was some pain. They applied some more sedative after that. I fell asleep again until it was all finished.

My parents joined me in my the ward shortly afterwards. They told me that the doctors believed the treatment had been successful. They are confident that they have removed the accessory pathway and I should be cured.

While I was in recovery, I was advised to keep my leg flat for 20 mins, then was briefly assessed. A short while later, the ward nurse came by to check the wound around the incision site (the groin). It was still bleeding so they had to apply pressure on it for about 10 mins. This hurt a fair bit.

Apart from feeling a little tired, drifting in and out of sleep for an hour or so, I generally felt ok. Apparently, I was making less when I was speaking. I had a bite to eat and felt much better.

A few hours later, I was free to move around, pack my things and prepare to leave. Getting off the bed for the first time, I was aware the extent of restricted movement due to the would on my leg, I reluctantly shuffled around, struggling to put clothes on and had to ask my dad to tie my shoelaces. I was soon discharged and I slowly hobbled down the labyrinth of corridors, heading for home.

RECOVERY

The following 24 hours were somewhat of a blur, fortunately, my family were on hand to help look after myself. I was advised in no uncertain terms that I was not allowed to be left in charge or lift either of my children for the first 24 hours after discharge. This was due to the effects of the sedatives. Sitting around and not being able to help care for my newborn son was a little hard to take.

The next day, I was able to walk a little so we managed to take the kids to the park to let off some steam. On the return home, I did feel the strain around the groin area, a reminder to take things steady in the early days.

As the days have passed, I have been increasingly more mobile. I can walk normally most of the time and can climb stairs without too much bother, I get the occasional twinge in that area so I will be taking things a little more cautiously over the next few weeks. I was advised to not lift anything heavy for 2 weeks. This has nearly passed now so I am more or less back to business.

The bruise on my leg grew over the first 5 days, but has now faded a bit in colour and is looking less angry.

I have had the occasional beat skip in my heartbeat and a few moments where I have felt as if I was about to have another episode of palpitations. According to all my discharge advice and research, this is entirely normal. It is usual to expect the odd blip while the heart heals.

As I am no longer required to take bisoprolol, I think I can feel some of my natural energy returning. I do however, have a new born baby in the house. With the interrupted sleep that comes with that, I do still have a bit of tiredness, but I suspect this is not relating to the treatment or my heart’s recovery.

BACK OUT ON THE STREETS?

As the treatment date for the procedure was far later than I was expecting, I regretfully had to withdraw from the #Tedicated 2 marathon challenge I set myself around this time last year. Although I have been told the treatment has been successful, I will have a follow up appointment where any further issues/complications will be assessed.

Due to the nature of the procedure, total success can only really be determined once the scar tissue has formed and the heart has returned to its new normal state.

I should be able to start gentle exercise shortly. Once I feel confident my leg has healed enough, I plan to lace up and go for very gentle jog for a mile or so and see how it that feels. I have sought advice from other sufferers of the condition through the Cardiac Athletes. The key point is not to over do it in the early stages of recovery. The journey back to full fitness may be a bit slow and steady.

Thinking more long term, I will find out if there are any restrictions on activities I can pursue. I will then re-evaluate my goals before making any firm plans concerning getting back to more serious event running.

Thank you for reading.

My condition made me realise how precious life is!

June will mark 4 years since I first discovered something wasn’t right. I was playing pool at the time in a competition match for prize money. There was a lot of pressure and my body could feel it. I was winning 1-0 and all of a sudden I started to go dizzy so I decided to have a drink and try and relax. I returned to the pool table to take my turn and next thing I knew the room went black and my heart was racing. I woke up around 10 minutes later not knowing what had gone on. After 2 hours of waiting I was taken to hospital via ambulance. After explaining all of my symptoms which consisted of my heart racing, sweating, dizzy and effected vision, I was discharged with heat exhaustion and dehydration. I didn’t know what to think other than something wasn’t quite right.

The next few days, I felt unwell and underwater so I called into work sick. After being off for a few days I returned to work to be told to go home. They later revealed I wasn’t allowed to return to site until I could prove I wouldn’t blackout again. This made the situation a million times worse. Nobody in the world can prove they will never blackout. My GP even declared me fit for work however my previous employer wouldn’t accept this, so I had to find another job.

From this day forward, I started to get palpitations quite often normally when I was stressed about something. I always remember the time I thought I was running late for work and I had palpitations then for around 5 minutes. I went back to the GP many times just to be told I’m stressed.

The second time I collapsed was at work’s Christmas party. I did not drink much alcohol, just a bit of dancing which led me to collapsing on the dance floor. I got checked out by paramedics who said I was fine and okay to go.

The day of a friend’s wedding was the next event and I attended the evening party. I was having a great time dancing and the next thing I knew I woke up around 5 minutes later in a pool of blood from my eye which I had split from the collapse. I was rushed to Nottingham Hospital and discharged the same day. A letter was sent to my GP. Each time tested my ECG was normal.

My GP finally referred me to hospital under the Cardiology department as I explained I was still getting palpitations. I was put under 24 hour ECGs which showed nothing and then a week long ECG which again showed nothing. My cardiologist made the decision to implant the reveal device. At this point, my heart was becoming progressively worse. Only 2 days later, I received a call to get to hospital right away as my cardiologist wanted to see me. He gave me a low dose of Bisprolol to try.

The tablets seemed to be working for a while however after some time the palpitations returned faster and harder than ever before. It was winter 2016 and it was cold outside and my heart began to palpitate whilst de-icing my car. From here I knew this was going to be a bad day. I was midway through my warehouse shift and I felt dizzy. My heart raced and I went blind. My vision returned blurred however I held my fingers close to my face and couldn’t see them. I knew this was serious, I was sweating like I had done a marathon.

I wasn’t thinking straight at all. I decided to call my doctors and ask for an appointment and I strangely got one! However, my team leader stopped me and made me ring 999. I’m one of the people who are very reluctant to dial 999 for some reason. I didn’t feel this was important enough. The ambulance arrived in super quick time with a cardiologist who plugged me in. It was at this point we realised how serious this was. My heart was racing at 288 beats per minute. I remember him saying to the crew get the stretcher this is serious. At this point my hands were blue due to lack of oxygen in my blood. When chatting to the cardiologist who told me the situation he said two sentences which will stay with me forever:

“If you were any older you wouldn’t have survived this”

“If you do go then I’ll do everything I can to get you back”

I asked questions like “will I be okay?” He didn’t reply to them.

    

We made the trip to the Royal Stoke and the Resuscitation team managed to calm my heart down and move me into the Coronary Care Unit. I was being observed for several days with the odd run of palpitations and odd beats here and there. After a few days had passed, I was moved onto a ward and then my tablets increased to the maximum dose with the view to go home. I wasn’t happy with this as the tablets were having a bad effect on me with the side effects such as feeling down and not wanting to do anything. I stayed in because I refused to be discharged, this proved to be the right thing to do.

Later that evening, my heart played up again with long runs of palpitations setting off the alarms connected to my chest. That same evening whilst resting, it happened again so the doctors decided to run an ECG whilst having a 1 to 1 supervision-this lasted for 12 hours. The ECG showed where the problem was and put me in for MRI scans first thing. The results showed a scar in between my heart and heart wall which created these palpitation beats.

My Cardiologist decided to put me in for a VT ablation. I was told this would be a short operation in which they would go through my groin in the artery leading to my heart ablate the affected area, which is burning on the area which was causing me problems. However when this was taking place, my heart went into overdrive which caused me to blackout twice which resulted in a shock from the defibrillator. I remember waking up and thinking I’m not coming out alive. This made me think of the people I love and the last things I did and said to them.

We discovered the operation was unsuccessful and we needed to act differently so he placed me on two drugs and offered me an ICD (implantable cardiac defibrillator). I accepted this and had the device implanted. Since then (touch wood!) things have been great and I’ve only had the odd run of palpitations. I’m still being monitored 24 hours a day by my device which transmits data back every day. Not only does it provide me with a shock if ever required but pacing to help my runs of VT.

Before leaving hospital, me and my fiancée analysed life and how precious it is. We decided to try for a baby when I was fit and well. Natasha was my rock and helped me every step of the way. We have since had our baby girl who is now 9 weeks old. Life couldn’t be any better-I was so lucky! Now my defibrillator sends daily data from my heart’s activity for them to analyse-this is so clever and impressive. If any problems are found, they give me a call. I now take 2 types of tablet (Flecainide and Bisoprolol). I take these 3 times a day, they are so good and I feel a huge difference.

Whilst I was in hospital, I had a text to say one of my friends had been rushed in too, due to his heart, but he didn’t make it. His brain was starved from oxygen for too long. The decision ­was made to switch off life support. I was thankful to the staff for letting me say my goodbyes even though it carried risk. I still carry Carl’s poker chip in my wallet as a good luck item. It’s working so far! Carl’s parents made the hard decision to donate his organs. Today he’s saved many lives. How amazing!

If my experiences taught me anything it is that life is too precious and short. So, live it how you want to! Any concerns you have whether it be your heart or any part of your body always get checked out. Sometimes the smallest symptoms can lead into something much greater.

I would like to give a special mention to the Cardiology team at the Royal Stoke University Hospital who looked after me every step of the way. Thank you also to Dr Morley Davis you has given me the chance to live a normal life which I will forever be grateful for.

If you’re in doubt about your heart and you feel the doctors aren’t doing enough or going in the wrong direction, don’t take no for an answer. I’m lucky enough to tell my story.

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My Heart Story By Rich Morris

Hi Everyone, It has taken me a long time to find somewhere to share stories, thoughts and experiences with others in a similar position. And it feels good!

I have been active throughout my life, playing every sport accessible to me. My first experience of any cardiac issues was at around age 18, I think I had over indulged on beer one evening and found my heart racing and struggling to catch my breath. It was only a brief episode and I soon recovered. A few months later, I was competing in a county Golf match. I had just sank a winning putt and suddenly my heart started to beat rapidly. A team member took me to the nearest hospital. They rigged me up to an ECG, and decided to blue light me to Gloucester Royal Hospital where my heart rate was slowed from 220 bpm in AF, back to sinus rhythm.

With no further diagnosis or medication, I carried on with my life, not thinking about it too much.
At 20 I successfully joined the police force, started my new career with West Mercia Constabulary. During my first year my cardiac symptoms started to repeat. With no official diagnosis, and the force doctor unable to pass me fit I was unfortunately discharged.

After this knock back I decided I needed a diagnosis otherwise my life would continue to be disrupted. It took years of 24 hour heart monitors, beta blockers, chest xrays, ECG’s, and cardiac imaging to finally get to see an electrophisiologist. Dr Rajappan was fantastic, looked at my notes, and could see it was having an impact on my life. Being unable to play football with my son and go trampolining with my daughter was heart breaking. He offered an ablation to study the heart and see what was causing my symptoms.

I did have a rough time leading up to the ablation, divorce and diagnosis of Ulcerative Colitis, however I was actually positive about coming out the other side even stronger.

I had my ablation on 21st Jan 2015 (then 31) and finally found out what was causing the symptoms. I had an ablation for Atrial Tachycardia and probable AVNRT. These tachycardias were degenerating into Atrial Fibrillation and causing a dangerously high iirregular heart rythym.

It took around 2 weeks to feel myself again, however the team at John Radcliffe were amazing.

I have since had lots of palpitations, I am unable to sleep on my left side and unable to push myself physically as it reproduces cardiac symptoms however it has not gone into an abnormal rhythm since the ablation 3 years ago.

I feel I need to see my electro-physiologist again soon as it is starting to impact my life again, however I have not given up hope in getting back to full fitness one day.

Thanks for reading, and look forward to reading everyone else’s story 🙂

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.

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.

Gary McElkerney

Living with my condition supraventricular tachycardia, struggling with my head

Limerick Vikings American Football Team were always going to be a tough team to play and making the 5 hour coach journey to Limerick University was always going to be a disadvantage.

It was the 25th July 2009. I got off the coach after a 6am start and remember saying “I don’t feel good about this”. At the time I put it down to nerves, playing in the semi-final of the Shamrock Bowl.

It was in the 3rd Quarter when I was illegally hit square in the back after the whistle, that I was rendered unconscious. It took the Red Cross 15 minutes to carefully place me on a spinal board and lifted on to the ambulance.

However, on the way over my team mate Matt Craig (ex-paramedic in the States) pointed out that I wasn’t breathing and then discovered I had no pulse. I was dropped immediately and CPR was performed sending emotional shockwaves through both teams.

I came in and out of consciousness and was immediately taken to hospital. I was accompanied by my parents and spent the next six days having a series of tests and scans; trying to get back on my feet and suffering from a series of panic attacks. I was then informed I had SVT (supraventricular tachycardia).

I wasn’t fazed that I had a health problem; I was, however, affected by the sudden limitations.

Everything initially became a struggle – walking long distances, even staying awake for long periods of time; and I suffered breathlessness and pains in my chest. I had gone from being a regular gym enthusiast, fit and healthy, an international athlete for Northern Ireland and Ireland, University Sports Scholar, first pick wide receiver in American Football for Carrickfergus Knights and had played for Team Ireland; to struggling to run the length of myself. Being both stubborn and determined, I decided to get back to being fit while waiting for heart surgery (ablation). I would get my fitness back up and get back on the pitch. Unfortunately I was cut short, as the League need confirmation that I was fit and healthy enough to play full contact – something that until after ablation was not advisable or possible.

I never really thought about being resuscitated or the extremity of the condition. However when it struck down a 16 year old GAA player, I started to get frustrated and depressed. My biggest struggle at the time was my own head. I resented being told I couldn’t do this or I wasn’t fit enough. I turned on team mates and found myself on the bench for my own safety – but not that I saw it that way. I became angry and constantly frustrated at the ‘concerned’ attitudes of others and the constant waiting for the ablation; all the while counting the young people in Northern Ireland who were losing their lives to Sudden Death Syndrome. Why did I have to live?

This was picked up by my friends and family and I needed focus. My housemate (who lost a friend a few years previous to Wolff-Parkinson-White syndrome) told me to get in touch with CRY and see if I could help raise awareness in Northern Ireland.

The Carrickfergus Knights where starting the 2010 season and decided to wear the CRY logo on our merchandise t-shirts (left) to raise support and awareness around the League as a reminder that even the fittest were vulnerable. I also started talking to people in CRY and reading accounts on the website and speaking to my local GP.

On 9th July 2010 I spent 4 hours in surgery. Everything went according to plan and I started rebuilding my fitness.

Again, my issue was my head running over the procedure that I had been told about and read about; but I tried to not let my nerves get the best of me. I’d never had surgery before and my first time being heart surgery had me worrying. The best way I could deal with the worry and nerves was that I had the support of family and friends and I was in the hands of professionals.

Just recently I travelled back to Limerick University and played my first match after two years – on the same pitch against the same team (right). There was no Hollywood entrance; it was a hard fought game and at times I struggled both emotionally and mentally.

I was fearful and hesitant, but by the end of the match I had made it back on the pitch and scored the Knights’ only touchdown of the day. To some it was just a game, but for others and myself it was a positive step to getting back to normality and closure.

I struggled emotionally and mentally over two years and at times I really didn’t deal with it too well, if I even dealt with it at all. I still have a lot of unanswered questions and some frustrations, but in all I owe my life not only to the Red Cross and the Royal Hospital Cardiologists (Dr Roberts); but also the non-professionals – my family and friends, the Carrickfergus Knights and most of all my girlfriend at the time, Mel, who went through the daily motions and emotions and sat through seven hours of surgery and recovery. Words can’t express my heart-felt gratitude.

Gary McElkerney

Pictures supplied by Paula Shone and Ariane Boudias

Abi

Living with right ventricle outflow tract ventricular tachycardia (RVOT-VT)

My condition came to light at the end of 2008 when I was 34. I’d been to the doctors to discuss these strange palpitations and dizzy spells I’d been experiencing, but was sent away and told it was due to “stress”. This seems to be the usual response from a GP the first time you report these symptoms. I remember thinking, I didn’t even know I was stressed but perhaps I was and this was how my body was coping.

Fitness wise, I was reasonably active. I swam and ran every week and generally felt well, so wasn’t worried that this was anything more serious than stress related palpitations.

After a routine trip into hospital to have four wisdom teeth removed under a general anaesthetic, the nurses told me they had trouble stabilising my heart rhythm when I was in recovery. Once back in my hospital room, I was advised to see a cardiologist to ensure that everything was fine.

Again I wasn’t too concerned but thought I would mention it to my doctor when I was fully recovered.  The next evening I was home, in bed recuperating when my heart started to behave very strangely. It began flipping, jumping, and felt like it was falling over itself. A strange way to describe it but it’s how it felt. It would flip and felt like it was stalling. I felt dizzy, sick, scared, as if I was going to fall unconscious. I rang the emergency medical line and they told me to call for an ambulance who took me straight into hospital. From there they referred me to a cardiologist who over a period of weeks carried out a series of tests; a stress test, ECHO an MRI of my heart and I had to wear a 24 hour Holter monitor etc.

The results were in – the good news was that structurally my heart was fine, but the holter monitor found something. It was a run of tachycardia around 250bpm – it was then that I received the diagnosis of right ventricle outflow tract ventricular tachycardia (RVOT–VT), a benign heart arrhythmia, although sometimes frightening for the sufferer. I was sent home and told to see how things go and to try beta-blockers.

For some people beta-blockers are great and work wonders, but they made me feel dreadful, tired and depressed so I came off them. As time progressed the symptoms got worse and having felt like I’d exhausted all routes of medical help in my local area I went online and came across the London Bridge Hospital website and from there contacted an electrophysiologist who felt confident that they could help me.

After my consultation and more tests, my first ablation was booked. I’d read up a little about what was involved but I can still remember shaking when I was getting ready in the hospital room. All kinds of things were running through my head; will it be painful, will I survive, what if it doesn’t work, how long will it take?

I was given a huge gown to wear, one that has loads of pockets that can be pumped full of warm air to keep you comfortable when you’re in theatre. I looked pretty funny and my husband and I were joking about it, he even took a picture of my theatre outfit!

As I walked down to theatre I remember thinking I hope this is the end of all the problems and that my life will return to normal. I couldn’t believe that my quality of life had changed so much in such a short space of time. RVOT-VT had meant I was no longer able to run or exercise without feeling utterly drained and ill afterwards. My arrhythmia was daily and left me feeling weak, ill and unable to concentrate on anything. I had chest pains and sleeping had become a problem too. I couldn’t sleep on my left side and would suddenly wake gasping for air. So, despite my fears of going into theatre I focused on my future, one that would allow me to go on to start a family without being plagued with these symptoms.

Everyone involved in the procedure were amazing. They helped me onto the theatre bed and began attaching the leads, which they use to monitor your heart throughout the procedure. I was warm and comfortable. They gave me a sedative to relax me and I actually fell asleep a few times during the procedure. I also had an oxygen mask.

They made an incision in my right groin into the femoral artery which is how they get the wires up into the heart chamber. I didn’t feel any pain. They would stimulate the heart with electrical current so they could see the problematic areas on the monitor and know where to ablate. I could feel some pressure in my chest when they were stimulating the heart but after some more sedative I drifted off to sleep.

Two and half hours later I was back in the hospital room and was elated that it was all over.

After about eight months it became apparent that my particular RVOT-VT would require a second ablation. So I was back in hospital again and this time the procedure took over four hours. I don’t remember this one as I was blissfully sleeping throughout, but was told afterwards that there were multiple sites that needed treatment. Recovery from ablation is very quick. I stayed in hospital overnight to ensure that my heart was happy and that the incision in the femoral artery had closed. The next day you’re home and on your way to a feeling better. I took a few weeks off work to rest.

It’s been over a year now since my last ablation and I’m very pleased with the results. My heart is so much better. It’s been a long emotional journey, not just for me but for my entire family. I’m due to have a check-up in the next two weeks but I feel confident about the future and know that I shouldn’t be frightened of this condition. I’m looking forward to starting a family and living a healthy happy life.

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.

George Ranger

Living with supraventricular tachycardia

I am writing to thank you so much for your kind help and support that you gave to me at the end of last year when I telephoned CRY extremely worried about my son George.

If you remember, George is at Lord Wandsworth College and I was having terrible trouble getting him diagnosed with any problem at all.

As a mother I knew that things were not right with his heart, so I was getting even more worried and frustrated every time I was told that there was not a problem at all and everything was normal.

The day I found that rugby ball outside George’s bedroom with the CRY logo on it and called you was the best thing that I could have done.

It was such a relief to be able to speak to someone that actually took me seriously! I am still disgusted that he was told by doctors that he was imagining his palpitations.

You were most helpful and supportive and I can’t thank you enough for pointing us in the right direction and advising us to see Dr Sharma.

I am delighted to tell you that it turned out that George did have supraventricular tachycardia (SVT) and I can also happily tell you that on Monday he had an ablation carried out by Dr Mergatroyd at the London Bridge Hospital. It all went very well and appears that it was a complete success.

We are one of the lucky ones, in that George’s condition isn’t life threatening and he can now happily go on to live a fit and normal happy life. However, I am concerned, as I know from CRY that there are so many young people that are totally missed because they don’t or can’t see the specialists with the specialist testing that they need.

I fully support the excellent work that you are doing and the awareness that you are creating for those with cardiac risks and as a way of saying thank you to CRY I have made a donation of £200 online to your excellent and most worthy organisation.

Keep up the good work, and be assured that CRY is mentioned by us not only to family, friends and acquaintances but to doctors too!

Julia Ranger

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)