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.

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.

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.

Lyndsay Morton

Living with Wolff-Parkinson-White syndrome

When I was 19 I was woken by a paramedic at 3am one morning. The paramedic had been called by my partner because I had stopped breathing and started fitting in my sleep.

Subsequently I was told that I was “stressed and its nothing to worry about”!

I kept getting severe palpitations – often out of the blue – which would make me pass out at times and feel quite sick.

I was still informed I was having severe panic attacks and learnt to deal with these symptoms.

On New Year’s Day in 2001, I collapsed with a severe chest pain and palpitations of 228 bpm. I was rushed in to hospital where they had to stop my heart beat and revive me. After several days of very frightening tests I was finally diagnosed as having what was then thought to be a very rare heart condition – Wolff-Parkinson-White syndrome (WPW). I was sent home to live ‘a normal life’ on two beta-blockers a day.

Two days later I was being revived by paramedics in my bed, as again I had turned blue with a heart rate going up to 200-240bpm and had started to fit. That night I was rushed into hospital and operated on within hours to undergo the cardiac ablation procedure.

After five hours in surgery and a week in hospital to recover I was informed how lucky I was to have gone through such a traumatic experience.

To this day I am grateful to still be here, and even more grateful to have had my daughter after being told that my heart may not be strong enough to go through pregnancy. I do still suffer palpitations and chest pains and continue to undergo tests and wear heart monitors several times a year.

Scott Fleming

Living with Wolff Parkinson White syndrome

I was 27 when I collapsed whilst playing Sunday league football. Little did I know I had been living my life with Wolff-Parkinson-White syndrome (WPW).

I survived this collapse and resulting coma and awoke to find the doctors still never knew what was wrong with me.

After a few tests they discovered what it was and were pretty surprised that I was still around!

A few days later and I was whisked off for the ablation procedure, after which I was told I could head home.  It wasn’t too long before I was building my strength up and leading a normal life again.

I am now back playing football, going to the gym and recently (February 2009) I just climbed Mount Kilimanjaro in Tanzania, raising over £3000 in the process.

So by no means does having had WPW have to slow you down.

The key part is getting it diagnosed first – in my case this could have saved the NHS thousands of pounds and a whole lot of precious work hours!