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 🙂

Brugada and me by Laurie Ketley

The 9th December 2016 isn’t a key date for me. On that day, I was with my Mum, Dad and younger Sister, who were finishing up from undergoing their Flecanide Challenges…which all fortunately came back clear, which was a huge relief.

At 18:30 I received a phone call from my Cardiologist, who went on to tell me I had Brugada Syndrome. I heard him conclude that we were to meet very soon and discuss how we moved forward, I agreed, emotionless really and quite matter of fact, I said my pleasantries and put the phone down and that is how I was diagnosed.

I looked at my Dad who I was with (at that time as I was splitting myself between the three) and I just simply said, “I’ve got Brugada.”

I had a few tears in my eyes, but I’m a ‘be strong’ kind of person. (I cried, lots that night though) Then I went and told my Mum and Sister whilst the doctor was there. It was such an odd experience, like a kind of a good result for my family really, an explanation, a strand of hope for a resolution of some kind perhaps. Almost I felt like I should be happy I’ve given my family the knowledge to move forward with this, but inside I felt lonely and a bit numb to be honest.

Why? Because my key date isn’t the date I was diagnosed. My key date is;

18th March 2016

A day that is etched in my memory for eternity. The day my beautiful, funny, vibrant and much loved younger Sister passed away.

Alanna Marie Ketley was full of life, which was stolen from her at the age of 18. When life is supposed to really begin and new paths are paved, hers were cut short. Prof Mary Sheppard and Cardiac Risk in the Young helped with Alanna’s heart personally, in the most needed CRY Centre for Cardiac Pathology and even came to her inquest in Coventry, which we are extremely grateful for.

So although I don’t want to take away the mental and physically daily struggle of having any health condition, in my case Brugada specifically. Personally, my struggle began 9 months prior.

I’ve been under cardiac investigation since 2012, I originally had one or two palpitations a week, increasing over time, until most recently being thousands a day. I remember also being pregnant with my little boy (now 4) and knowing that I was pregnant because of the extra strain on my heart and the palpitations dramatically increased. During this time I saw a Cardiologist who in front of 6 Students laughed, told me I was imagining things as I was probably suffering with pregnancy anxiety and left me on my way. If only she knew, perhaps if she had taken me seriously, done more tests maybe, my Sister would have also found out about our hereditary condition and she may have been alive today, also perhaps not. This is why my family had all their tests done together and at a different hospital and I had mine alone prior as I had been symptomatic and were already known to my Cardiology department, which at time also made me feel a little alone or perhaps isolated.

The tests became more extensive and invasive, albeit necessary and that I am grateful for. They were a little scary, often it’s more of a mental struggle that a physical one. I often put a brave face on, although sometimes it slipped slightly, I have to remind myself that it’s okay to sometimes not be okay, I’m still working on that! I pretty much had every test you can have, the most intrusive being an EP study, but be assured they look after you well.

Fast forward to my Ajmaline Challenge on 6th December 2016, I’m a nightmare to cannulate, so three different Doctors and 9 attempts later I was good to go! I kind of knew I had Brugada Syndrome straight away from the look on his face and the probable regret of him putting emphasis on how life changing a condition like Brugada could be in the pep talk to my Mum and I beforehand haha! Then there was a little awkward mumbled conversation about there being the Brugada pattern but he wasn’t qualified to diagnose and then he even special ordered me a full English breakfast to my bed?! Winner Winner!

Then 3 days later it was confirmed – partly to my harassment as I partly expected the result.

I’m not sure how I feel about it. Sometimes I feel like a normal healthy 26 (JUST!) year old and the Doctors are loopy, sometimes I feel a bit lonely, glum and the worlds against me. In March I was admitted to hospital after falling unconscious at my Mums, where I was then kept on continuous monitoring on the Coranary Care Unit for a week, which was erm, a bit lonely. Being the youngest by around 40+ years and watching all this poor people who had sustained heart attacks come and go, kind of hit home how serious Brugada is. On March 27th 2017, the day after Mother’s Day, I was fitted with a duel lead ICD and Pacemaker, this is where it gets weird!

So the morning of the 27th the am doctors walked in and announced I was to have my ICD fitted that day! I had initially been told it was expected to be later in the week, panic mode now fully on! My Mum and Sister, Kamarah visited that morning as they were off to the other side of the West Midlands to get Kamarah’s Implanted Loop Recorder fitted. So at that point I decided to keep my ICD surgery a complete secret. To the point that my Nan and Grandad came to visit me as I was being wheeled to surgery by surgeons in scrubs and I was going for an XRay!? I knew my little Sister would need my Mum there with her and also I didn’t want her appointment being cancelled or the upheaval on the family. So logically I decided that I would go at this alone, I remember then saying I was weirdly hyper that day – adrenaline for you!

Sometimes I’m guilt ridden, why did I get to stay alive and Alanna didn’t? I’m older? But I’m overall grateful and thankful. I do think about getting shocked frequently, I think I’m prone to worrying more when I’m a bit poorly, when my hearts playing up a bit, when I exercise in the gym, sometimes I think about putting the emergency stop rope clip attached to my top (which you’re supposed to) just in case I get shocked, fall and then have treadmill burn prints along my face – I’m not dramatic at all, needless to say, I don’t attach said pully cord as I’m 26 and that’s far too uncool. Mature like that too…..But if I was shocked…? Well aren’t I a bit lucky that I get to watch my little boy continue to blossom into a bigger boy.

Now, this is my worry. I worry about my little boy, Harlan. I often have nightmares. In fact pretty much every night. He has a 50% chance of having Brugada. It’s literally like flipping the coin of life. Mornings are the worst if Harlan has decided to sleep a little longer. Alanna was found in her bedroom you see, so I constantly worry that I will find Harlan the same way. But we will cross every bridge as we come to it. We are best friends my boy and I, a strong unit and for as long as we can be we will remain that way. If he was ever diagnosed, I honestly and truly don’t know how I would cope with that, but as with everything, I guess you just do.

I’m currently on 10mg of Bisoprolol. I find I’m constantly tired, drained and like I’ve never slept enough, my hair falls out too, that’s not very ideal now is it!? But I go to the gym and lift weights three times a week, I run 2.5 miles beforehand. So keeping an active lifestyle is important for me mentally and physically. Other than the big BS and Pacemaker my life after diagnosis hasn’t really altered because I haven’t let it! I do feel a bit like a loner in my family, although everyone has their own things to deal with and very similar they may be, they’re still not the same. The reality is, if I had been diagnosed with this prior to Alanna passing away, this diagnosis would have felt very different to everyone, myself included. It would have been a big thing, serious and important. I think I probably get a little bit less support now than I perhaps would have before, because that would have been the most heart breaking news our family had to deal with. It’s not now, for them or me. Sometimes I feel that I do have to deal with it all alone as I know that my parents are grieving their most horrendous and life altering loss that I don’t want to burden them with my problems, my Sisters are also the same. So I just keep quiet and I don’t really mention it. I also feel bad that my Sisters don’t have answers they perhaps want or need, so I feel like because I have an ICD and a strict diagnosis I am almost rubbing it in. It’s a bit strange. I think our family is struggling, with one thing after another so we just muster through by not talking at all about personal feelings.

This isn’t designed to be a negative or a morbid post, I’m just trying to be factual and honest, sharing my story, which is personal to me. I’m lucky to be here and I’m so thankful to the brilliant care I’ve received from my hospital, University Hospital Coventry and Warwickshire and the unbelievable support we have been able to access from Cardiac Risk in the Young.

CRY provide an abundance of support should you wish to seek it. I utilised the Sibling Counselling phone calls which allowed me to speak honestly and openly in private to a person who can appreciate the pain of losing a loved one and my lady could also appreciate the reality of diagnosis post loss too which helped me massively. I have recently raised ÂŁ1,630.00 for CRY, alongside putting their charity link on the well-known Wolf Run website and I aim to raise a lot more in the near future.

I do live everyday now with a ‘life’s too short’ attitude. Book that holiday. Don’t text that Ex back! Educate yourself. Do things for you and hey, be a little bit selfish. Life’s a gift and regardless of your circumstance, illness or situation know that there is always someone around to listen or to just be there. That you’re special, wanted and unique. I might not be wearing your shoes, lived your experiences or share your illness, but know that you can work through it, against it or perhaps even with it.

“A candle loses nothing by lighting another candle”

Laurie-Elizabeth Marie Ketley

Remembering  Alanna Marie Ketley 11.09.1997 – 18.03.2016

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I thought I had a flu but then I suffered a cardiac arrest! by Jake Fordham

On Tuesday the 21st of February I was sent home from work a little early as I was feeling unwell. My colleague had only recently returned to work after having the flu so I assumed I was coming down with something similar. My manager asked me to call in the next day if I was still feeling unwell but hoped I would be feeling better. Wednesday morning arrived and I was feeling worse. I had a dry cough and high temperature.   I didn’t think much of it; I got up and went downstairs, made myself some soup and got back into bed.

The next 24-48 hours are a blur to me however were the most life changing moments of my life.

I was asleep upstairs and my mum was in the kitchen making herself lunch. She had the radio playing whilst keeping an ear out for the dogs. After a while she noticed the dogs behaving in an odd manner, they were running up and down the stairs and barking at my door as if they were trying to tell her something. Mum could hear me making a noise and thought I was singing but when I didn’t answer she  went upstairs to find out what all of the fuss was about. Opening my door she found me having what she immediately believed to be stroke or fit. Without any hesitation the paramedics were called as the operator guided my Mum in what to do next.

At this point I could not talk or move, I was making noises but they were nonsensical babbles. While waiting for the paramedics to arrive my mum was checking to see how much function I had. She was asking me my name, if I knew where I was, and what my date of birth was. For my mum, the eleven minutes that the paramedics took to arrive felt like hours. When they arrived I was slowly coming out of what they thought may have been a seizure. My speech was returning, although a little slurred, and I was starting to appear fine. Then, out of seemingly nowhere my eyes rolled, I went limp and, what we now know is, my heart stopped. By this point my dad had arrived back home after being called by my mum. My dad told me that as the paramendics gave me CPR, he held my hand, but knew something was seriously wrong because as he held my hand he could feel me getting cold and lose colour, as blood stopped circulating around my body. I became limp and lifeless. Seeing that CPR alone was not working the paramedics rushed into action and proceeded to use a defibrillator to try and start my heart. After each shock, they performed CPR again and it wasn’t until 8 minutes later and on the third shock, that my heart finally began to beat again.

By this time another paramedic team had arrived and I was treated with an injection or antibiotics and antiviral, as they suspected it may be Meningitis. I was rushed to my local A&E and up to the critical ward where I was put into a medically induced coma while various tests were conducted to see why and what had happened. I was tested for several different illnesses. I had blood tests, a lumbar puncture and many many ECG scans.

As I was bought out from the coma 24 hours later I remember feeling dazed and very confused. I had tubes and machines connected everywhere there was space. My memory was awful and I would forget everything anyone told me seconds after. I didn’t know where I was or why I was there.  Also didn’t believe the doctors when they told me about what had happened.

I was transferred to the cardiac ward where I was monitored and assessed for three weeks before being transferred to a specialist cardiology hospital.

Once at the cardiology hospital I was diagnosed with Brugada Syndrome very quickly and was told I would and should have surgery to fit an ICD (implantable cardioverter defibrillator). A machine that would shock my heart and give it a sort of reset if this was to happen again. This was going to be fitted under my collar bone. I was scared and unsure but the fear of putting myself and my family through this all again was to powerful to turn down the procedure.

The hospital explained to me that I had suffered with Brugada Syndrome for all of my life but contracting the flu had raise by body temperature to a point that sent my heart into spasm.  They believe my first seizure was bought on by a cardiac arrest which I some how managed to come out of on my own.

I was 21 yeas old. I was fit and healthy. I had no cardiac problems prior to this incident and hope I have no more going forward. It was a shock to everyone and affected so many different people in so many different ways.

The first 6 months after the incident was tough. I was constantly scared of it happening again. I was terrified of going to sleep at night in fear of not waking up. Doing exercise was difficult as I thought that this may set my heart off again. 9 months later and I am still dealing with the affects of what happened but I am coming to terms with managing my diet and leisurely activities. I am now playing football and being active again.

Being diagnosed with Brugada Syndrome and having a cardiac arrest were the most terrifying things I have ever experienced, but the support of my family and friends was and is amazing. I have met lots of people through CRY that have experienced similar things to me and this was extremely helpful. I now know that my thoughts and feelings towards it are normal and that having Brugada syndrome is not the end of anything but is simply a part of me.

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Afternoon Tea by Sinead Watts

In 2014 my brother suffered a cardiac arrest. He was 21 at the time. Luckily he was in the car with my dad who rushed him to the hospital and they were able to resuscitate him (twice). Following a lot of tests it was discovered that he had Brugada Syndrome. As with most Brugada diagnosis, he had a ICD implant inserted which monitors heart movements and will kick start the heart if required.

Similarly to most of the stories we have read in C-R-Y resources, our immediate family also got tested for signs of Brugada. Mum, Dad and I all took the Ajamline test in October 2014 . Mum and Dad obtained negative results and showed no signs of Brugada, unfortunately I was not so fortunate. Towards the final stages of the test my ECG reading (in one lead) showed signs of Brugada. I have no symptoms and do not take any medication as a result of this diagnosis; I do however avoid prohibited drugs and remain vigilant of any warning signs.

 Following a search for a charity or support network which primarily focused on young people my brother and I came across C-R-Y. We found that a lot of well-known organisations focused on age-related heart problems and some had little or no knowledge of rare conditions such as Brugada. When we discovered C-R-Y it was comforting, both for us and our family. We have found the newsletters, in particular the members’ stories and also the information in the members’ area to be a good resource and reassurance that there are others who have been through similar experiences. 

 It is now 3 years on and following discussions with our family, we felt it was important to give something back and to do what we could to help C-R-Y to continue to provide as much support to those who need it. An initial idea of family-only fundraising event quickly evolved into an Afternoon Tea in the local Church Hall. We sought donations from local businesses who were only too willing to supply buns, tray bakes, tea and coffees. We spent a lot of time organising and preparing for the event however it was all worth it. In total 100 people attended the Afternoon Tea and we managed to raise a staggering £2,000 through tickets, donations and raffle tickets. 

   

 Without the support of our friends and family, French Village Bakery and Henderson’s Group, the event would not have turned out as successful as it was. It was encouraging to know how many people wanted to support this good cause and, more importantly, learn a bit more about the charity and the impact of heart conditions. 

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Super Ventricular Tachycardia (SVT) by Samantha McLaren

I have been suffering from SVT attacks since March 2010 when I suddenly collapsed at work.  I was taken to A&E for tests, my heart rate was very high reaching over 200BPM, I remember being very scared as I was never in hospital and was always fit and healthy.  They gave me a 6mg jag of adenosine and it slowed my heart rate back down.  I was told this can happen at any time as I have an extra pathway in which produces a rapid heart rate (arrhythmia) when the blood is trying to get around the abnormal pathway.  There aren’t any symptoms except the palpitations can be very uncomfortable, cause chest pain and tightness as well as becoming lightheaded, you may even blackout.  They do occur unpredictably and when you least except them in the middle of the night for example.  You may be able to control them with techniques, I used to try going for a cold shower or put a cold washcloth around my neck and I have also tried holding my breath for a few seconds to help slow the heart rate down.  Sometimes this isn’t always effective and I have to go to my local A&E Department to get an injection of adenosine which returns your heart beat to normal.

After my first SVT attack, I was frightened and unaware of what was happening to my body, I immediately googled the problem and got linked up to the Cardiac Risk In the Young (CRY) site. I registered with them and they sent me out some leaflets and books explaining everything, straight away I felt relieved that it wasn’t just me going through this and there are other people to share these experiences with.  Both myself and my family can’t thank Cry enough for their support throughout my journey.

The tests carried out on me during my journey with SVT were:

  • An Electrocardiogram (ECG) – where my condition was spotted and diagnosed.
  • An Exercise (ECG) – where my condition was monitored and I had to run on a treadmill whilst attached to the ECG monitor.
  • An Echocardiogram test – is where my condition was monitored using ultrasound waves to look at the structure of my heart, similar to those used in pregnancy.

Following all of the above procedures and tests carried out over the years I still suffered from Occasional SVT attacks and needed something to prevent this.  I was told I could get an “Ablation” operation, which would burn out the abnormal pathway to my heart.  At the thought of it I said no straight away and put it to the back of mind.  As I began to get more and more SVT attacks due to stress and anxiety, after a few years I decided I had enough suffering and should get the operation as it would help me and give me a better lease of life.

I received the phone call on the 19th of February 2013, I was told there was a cancellation for 7.30am the following day. I was in work and couldn’t believe it was finally going to happen.  I was in shock and excited at the same time, while another part of me was terrified, I had to convince myself I would be fine, this would be life changing!

The following morning my Boss drove me and my mum to the hospital, the Golden Jubilee National Hospital in Glasgow,  I was shown to my own room in the cardiac day unit and given my gown, where I prepared myself for the op.  One of the nurses came in to take blood, when I started crying uncontrollably and realised this was all happening, very fast, as I felt uneasy and scared.

Professor Rankin who was doing my procedure came into my room with his team and tried to relax me.  They all introduced themselves to me and were very nice and friendly.  He talked me through everything and reassured me I would be fine.  I felt more secure, stopped crying and told myself it would all be over soon and I would have a better quality of life.

As I walked to the theatre room I wasn’t scared but curious to all the tools and needles, I was a bit teary again and there were so many nurses around me to attach leads, which are used to monitor my heart and to make me comfortable.  They gave me a little sedation and I was still anxious and upset so I was given more.  I could feel more relaxed and stopped crying, I was awake during the whole procedure which lasted around 2 hours.  Throughout I could only feel the Doctors pressing at my groin where surgery was taken place.  I could hear them taking about what they were doing and every time I tried to sit up to look they kept telling me to lie flat and stay still.  I think it was just an automatic reaction to see what they were doing.  They made an incision to my right groin into the femoral artery which is how they get the wires up into the heart chamber.  They stimulated my heart with an electric current so they could vision my problem area on the monitor and know where to ablate.

Once the procedure was over I was lifted off the table onto my bed back to my room and told to try and get some sleep for a few hours.   I felt very unsettled and a bit groggy.  I was in denial that I couldn’t move and thought I would be able to go to the toilet and get ready to go home after I woke up.  As I tried to sit up I told my mum I couldn’t move and I couldn’t feel my legs, I panicked but my nurse who was looking after me, Jacqui insisted it was just the drugs wearing off and I shouldn’t worry.  After I woke up the second time I still couldn’t move and was told to stay in bed as long as possible.  I was given some aspirin to help with blood clots and some paracetamol to help with the pain.

After my ablation I was advised to take a week off work for full recovery as any heavy lifting or stretching may cause my wound to burst.  I had a lot of bruising at my groin and some internal bruising which caused me more pain at my groin and my thigh.

If anyone is told to have an ablation I advise they get it as soon as they can and not wait like I did, there is nothing to be afraid of! I’m so glad I went through with the operation and haven’t had any problems since and it’s now 2017!

 

I’m now looking forward to a great future all thanks to CRY!

Samantha Mclaren

CRY Survivor  xx

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Having a Heart Condition by Guy Heywood

Hey myheart members! I decided to write a piece about having a ‘Heart Condition’ which will hopefully help to prove that there’s nothing stopping you from feeling good ?
What does it mean to have a heart condition?

Does it mean I am unable to live life how I want? In a word, no. Does it mean I have to make sacrifices and resent those sacrifices, again no. Do I feel debilitated and as though I suffer from ‘a condition’, NO!
So what’s going on then and do I have a ‘condition’ or a ‘disease’?

In brief, I was born with a defective heart valve. My aortic valve was bicuspid, which meant it was missing a part, and was gradually self destructing, until, when I got to 29, it all but failed and within a few months I had open heart surgery to replace the defective valve. At the time I was engulfed in a whirlwind of appointments and seemed to spend my time listening to specialists in the cardiology world telling me that I needed more tests before a letter would arrive in the post with a date booked in.

I got used to looking at the doctors and nurses and seeing a vacant stare, as if they were holding something back from me. They weren’t really looking at me, or rather they were looking through me and I could tell they were hiding something. When the day came and I met with the surgeon, who was frank and quite casual about the matter, it actually came as a relief to finally know what was going on.

This relief was quickly followed by a sense of shock that I had never felt before. I was lucky to be alive and wouldn’t last much longer unless they operated. In the surgeon’s own words ‘you know how you hear of young people just dropping down dead? Well this is why,’ and I was left to go and prepare for the operation.

This news would be a shock at any age and having just turned 30 I kind of thought life was well and truly ahead of me. It wasn’t that I thought I was invincible; it was just something that had never occurred to me. I was fit, healthy and I had competed in a boxing match a few months ago…what was going on?
As mentioned, I felt relief more than anything else as all of a sudden everything made sense. This was why I was always tired, felt out of breath on occasion and so on. I was pleased to have an answer to a question I didn’t even know needed asking at the time; why do I feel so unwell all the time? Here was my answer.

Despite the diagnosis and following shock I felt like a small weight had been lifted. I was still very unwell and going through the motions of preparing for surgery but at least I could take comfort in the fact I knew what was going on and why I felt the way I did. This brought a great sense of calm over me. I was glad to finally know and happy I paid attention to the signs my body was giving me. It’s best to check things out, you never know and either way it’ll put your mind at rest.

So here I am now with a new tissue valve replacement, by new I mean new to me, it’s from another animal and often joke that I am now part cow. After I had recovered, I realised that I felt the best I had ever felt in my life, as for the first time I had a fully functioning heart!

Any news to do with your health may appear to be all encompassing and may even seem to signify the end of what you know. However, it’s down to you to interpret and deal with it the best way you can. We all possess a wonderful ability to change, adapt, learn and improve from any situation and we can always do this. In every sense what doesn’t kill you makes you stronger.

So if you have been given news of a heart condition and feel that it’s a weight or a burden and that life as you know it won’t be the same again, and it’s not fair, I would encourage you to remember that it’s up to you how you view the situation. Things could turn out, and often do, better than before. None of us know what is coming and how one event will lead onto the next, but they do. What we can do is take ourselves forward with life and embrace who we are.

I should have died three years ago and been one of those statistics; a young person dropping down dead suddenly. Instead I went skydiving last week. It’s up to you.

G Heywood Skydive 4

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This is a brief outline of how I came to know CRY, join myheart, and join MedicAlert

Cat-Burns-latest-May2015-1024x1024Shortly after university finals in 2010, I had a second ajmaline challenge (drug assisted ECG) in London under Professor Sharma’s team, with the unexpected result that I was positive for Brugada syndrome – unexpected because 18 months previously I’d received the all clear at a local hospital. However unequivocally grateful and relieved I’d been with the negative result, the registrar’s approach and manner had failed to inspire confidence – leading me to undertake the tests again in London and then in turn receive my final diagnosis with Brugada.

Prior to 2008 our family had never heard of Brugada syndrome and I had little knowledge of sudden arrhythmic death syndrome (SADS), let alone appreciated the frequency with which it strikes young adults – plus those of all ages.

That quickly changed when one of my cousins, Ralph, collapsed and died after crossing the finishing line of a half marathon; he was just 28 and had been fit, athletic and healthy all his life. Subsequent testing of Ralph’s immediate and extended family demonstrated a relatively strong inheritance of this cardiac condition.

Between tests for the condition I focused on enjoying university life, studying and seeking out new experiences, including sailing with the Jubilee Sailing Trust – which for me was a challenge due to seasickness, fear of boats and fear of heights. Now I can’t wait to go back.

In 2010, post university, I decided to set myself a new task; and undertaking a physical fundraising event appealed. However, as I’d allowed my fitness to slip following some back problems, it was going to push me significantly out of my physical comfort zone. This, coupled with learning Mum had inherited the condition (meaning I had a 50:50 chance) and the poor attitude of the local registrar, meant I sought reassurance for total confidence and peace of mind, prior to committing to a physically demanding training regime and event.

Professor Sharma, Dr Papadakis and the team could not have been better during the process of my diagnosis with Brugada; and one month later, after having had time to consider things, I accepted the option of having an ICD fitted. Six months after that I received my defibrillator locally, under the care of another professor who has subsequently been fantastic. Not being a straightforward patient at times, I feel very lucky to have benefitted from the expertise and care of two leading cardiology professors.

I received a newer type of device; the subcutaneous implantable cardioverter defibrillator (S-ICD). Implanted under the skin on the left side of the chest, with the electrode tunnelled under the skin, it is less invasive than traditional ICDs. Unlike a traditional ICD/pacemaker scar – with associated visibility of the generator in some people – the S-ICD is mostly unnoticeable; thereby reducing the likelihood of immediate recognition in an emergency, which is what led me to joining MedicAlert.

I rarely ever remove my MedicAlert bracelet, which is very unobtrusive. In the event of injury or illness and if I’m unable to communicate, medical staff who’re trained to check the wrists and necks of patients for medical ID will be alerted that I have Brugada syndrome and the S-ICD. I chose a MedicAlert bracelet for several reasons, including:

• the facility to translate individual data in over 100 languages, 24/7, whether I am home or abroad, via the London Ambulance Service – who are well versed in data protection, patient confidentiality, and communicating vital and sometimes complex information clearly and professionally.

• the ease of amending information, which includes next of kin details, personal wishes and any other information I choose.

• a wide range of jewellery designs, with a choice of styles, materials and prices.

• a flat rate of £30 a year (about 8p a day), which for me is a small price for peace of mind and effective medical attention.

• the Rod of Asclepius is the symbol used and is internationally recognisable.

• flexibility in having ID engraved with condition(s), allergies, devices and medications as appropriate.

Other companies or types of ID provided similar products but with fewer additions. MedicAlert was the only one I found at the time that provided all of the above benefits and as a member for just over 3 years I have always found them efficient and helpful.

Grateful I’ve never had to use the 24-hour service, I have found that wearing my bracelet has been helpful in certain other circumstances… most people haven’t heard of Brugada (or many of the types of SADS), let alone understand it. Therefore, when I’ve had to declare it, in addition to other unusual things on forms for dentists, class instructors, etc, a look of alarm usually appears when I briefly explain. It’s often alleviated when I reassure them I am wearing medical jewellery.

Wearing and keeping my bracelet updated also stops me needing to rely on others. If you ask yourself how many people know, let alone could remember (in what might be a stressed situation for them) important and accurate information about another’s condition, allergy, medication, etc, it is unlikely you would be able to name many. For me, as this list has grown, it would be unfair on whoever might be with me in an emergency. I do have information in my purse/bag most of the time, but this could easily be separated from me.

Since diagnosis, so much is the same and yet so much is very different for a multitude of reasons. The work of CRY is invaluable to ever-increasing numbers of people – from those who have suffered a loss and those who have successfully been resuscitated and/or diagnosed without suffering a cardiac arrest or loss; to those struggling to get diagnoses. Not to mention CRY’s life-saving research, clinics and pathology services; and their bereavement support and myheart networks.

Thank you to all at CRY for the work you do, so many would be lost without it.

MedicAlert is in partnership with CRY, for information on our partnership visit:

www.myheart.org.uk/medicalert

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Paul Cowling-DCM

Paul (cropped photo)Before I share my experiences and try to give some idea of how I try to cope with what has happened, one thing should be made very clear: having a heart condition sucks. I mean, it really sucks. It’s a massive thing to have to comprehend; that the core element of us, the heart, doesn’t work as it should. Or might not at some unspecified time in the future. How do you process that? With all the other challenges that we face in life, whether it’s exams, or paying rent, or accidentally locking yourself out when doing the bins and having to wake up your neighbours at 7:30am to get back in (I’m still so sorry Flat 19), having your body fundamentally betray you is hard to take.

In my particular case I had a cardiac arrest when playing football two years ago. If I hadn’t been with a group of such amazing people who knew CPR and kept me alive, or if I hadn’t been playing on the corner of Tooting Bec Common closest to St George’s Hospital, I might not be here today. I have no recollection of the day, waking up in the ICU on a Tuesday afternoon and thinking it was Sunday morning. The details of what happened keep on changing depending on whom I ask. At first I was told that my heart stopped for a few seconds, but that turned into 4 minutes, which has now become just over 30 minutes after I spoke to one of the London Ambulance Service guys who kept me alive. He also went on to tell me: “You turned the colour of a dead person and you weren’t responding. I thought you were dead.” Thanks, Bash!

And so here I am, diagnosed with dilated cardiomyopathy and with an ICD fitted and on more medication than I thought was possible. I am so thankful beyond words to my friends who not only saved me, but have also kept me sane throughout this whole time. The ambulance and NHS staff who have kept me alive also rarely get enough praise and I will never be able to thank them for what they have done.

How to follow on from this good news tale? That really is the question that most of us need answering more than how to deal with the medical side of things – medically trained professionals are here for that! The technical information is useful and the detailed reasoning behind the medication they give you is comforting. Your friends and family will always be there and, while maybe not having had to go through the mill quite as horrifically as my lucky lot, you should never tire of their concern and support (even if it does grate on your nerves being asked about whether or not that shopping bag is too heavy…). But no-one, and I mean no-one, is going to know your condition as well as you because it’s your body and you are the one who knows its rhythms and how it is responding to activity, stress, medication – the list goes on. Your cardiologist can give the most detailed explanation of beta-blocker medication and why you need to increase your dose, but telling you about how rubbish it is to wake up to chest pain and freaking out because you don’t know if it is something serious, or just the fact that you did a load of carrying stuff yesterday (maybe that shopping bag WAS too heavy…), is not something they can help you with.

Paul

This is why CRY has been so helpful to me and anyone with a heart condition, trying to find our places in the world. Sorry to sound dramatic, but it is really does feel that confusing and challenging at times. At others it feels like the biggest fuss in the world over something that had completely gone out of your mind today. The support that CRY offers, through both its dedicated staff and in the opportunity to talk to other people with similar experiences, if not conditions, is invaluable. Because let’s remember my starting point: having a heart condition sucks. CRY allows people like you and I to share our experiences with people who really understand the range of emotions that you are going through. I have been to three meetings so far and I have left every single one feeling more positive and well informed than when I went in. It is not the nerve-wracking one-to-one set up with a doctor or therapist, just a group of people having a chat. These guys “get it” – you aren’t going to be asked “Are you sure you should be doing that?” or “I think you should take it easy”. They understand the frustration, the uncertainty, the fear that maybe you don’t want to show anyone else. CRY is a community that allows you to gain an understanding, and maybe acceptance, of your condition. And that should always be the goal – living with this condition (varied!) in the best way possible for you, without going insane through an overload of advice. Knowing that I am not alone and that the stories I have told has given others some positive reinforcement is one of the best things that could happen from getting this heart condition (which sucks).

So don’t be isolated in this challenge – there are people ready and willing to help you. Yes, it’s a massive thing to have to deal with and you will carry it with you for the rest of your life. But you don’t have to carry it alone.

  • Paul (cropped photo)
  • Paul

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.

Paula Beck

Paula Beck (Simmonds) wrote her story to be included in the myheart booklet which was launched in November, 2013.

Paula coverI was diagnosed with Brugada syndrome on 8th August 2011 at St George’s Hospital. I am a mum of two, one of four siblings and was only 30 when diagnosed.

Our family underwent tests after my brother (Craig) suddenly died in Australia on 23rd April 2010, aged 31. Craig had two children, a daughter aged 8 and a son aged 2. Craig was such a loving, fit, healthy person who was a wonderful dad and had so much going for him. He lived in Queensland, Australia.

We all had ECG tests which were then followed by the ajmaline provocation test that showed strongly positive for the Brugada phenotype.

We didn’t know how my brother Craig died, so at the time of testing we were shocked that not only were we trying to deal with losing Craig but now we had to undergo tests to see if we had an hereditary heart condition that could have led to Craig’s death. I had no idea about genetic heart conditions before this and at the time it all felt alien.

The straight ECG test was fine, but I knew my 24 hour ECG test and exercise ECG test showed Brugada patterns, which made me concerned about the ajmaline test – especially putting my heart under that amount of stress. I was also trying to deal with the fact the rest of my family did not show Brugada readings on their ECG tests.

All my family had the ajmaline test on the same day. My dad, mum, sister and myself showed positive. Strangely, my other brother Gary was clear on all of the readings.

This diagnosis had a great impact on me. Initially I felt shocked and gutted but tried to stay positive. I thought that if this is why Craig died, then it’s lucky we have all found out so we can take precautions for ourselves, Craig’s children, my other brother’s children, my sister’s children and my children.

I then had an ICD fitted on 2nd May 2012 at St. George’s Hospital. I wouldn’t say I often get scared about things but, yes, I was scared before the operation. I decided to have this surgery under sedation but it didn’t work very well, so all I can say is that it was like being in a nightmare. The surgeon was extremely good and reassuring during the op, although I was awake and felt everything, even when unexpectedly my body jumped off the bed when they tested the ICD. That was extreme pain, but only for a few seconds.

After the operation I found myself so emotional, trying to deal with the fact I had a hard box inside my chest. I was constantly thinking of my brother Craig. On the ward I was surrounded by mainly older people. There was one younger lady who had just had a cardiac arrest. She had lost her memory and was really suffering trying to cope with everything that had happened to her. This put things into perspective for me. I was in some ways coming round to the fact I felt glad that I had this precaution inside of me. Also I was thinking about my two daughters and I hope they also take the precaution of having an ICD in the future – if they need to.

The first month was extremely hard emotionally, mentally and physically to come to terms with my diagnosis and the ICD in situ. I did a lot of exercise before this op and had to have a month off after. When I went back to exercising I found myself anxious, worried about how to begin exercising again. I was embarrassed about my scar, having to tell instructors and self-conscious about having to start exercising softly and with low weights. This was a challenge as the box kept moving around and felt weird. Also, because my muscle had been moved to the front I had lost a significant amount of strength in my left shoulder.

It appeared to me there was a lack of knowledge on the part of some exercise/gym centres with regards to young people with ICDs and heart conditions, to the extent of turning me away. This made me feel isolated and demoralised. I got great support from the CRY myheart meetings with other young people who had been through the same operation.

The impact of my diagnosis on my family is difficult to express, as it is strange to have both parents and my sister Brugada positive as well as me. In some ways I found this helped, as when my parents first found out my dad rang me in an emotional state and told me he was positive and it was his fault that everyone had it. Then seconds later I spoke to Mum who had just been diagnosed with it as well, so I thought at least neither of them feel like it’s only their fault.

I know my brother Gary felt uneasy and sorry for the rest of us, as he is fine. I worry about my sister as I feel she is still in denial about it all. Then I started to think about my children’s situation – my lovely daughters have a 50/50 chance of having Brugada syndrome and I may have passed this onto them. This makes me feel like I don’t want to have any more children at this present time but my feelings may change in the future.

Thankfully we have all found out and are aware of the necessary precautions that need to be taken so we won’t lose any other family member in this way.

My friends were very supportive through this time. Quite a few of them didn’t have any understanding or knowledge of Brugada syndrome, or any other genetic heart condition and I initially found it hard trying to explain.

Some people’s reaction to my scar was squeamish, it seemed as if they found it uncomfortable to look at. Personally I found this difficult and embarrassing to begin with. However, as time went on and with a few cheeky jokes about it, my confidence grew and I learnt to remember ‘why it is there’ (to protect and safeguard me if needed). With this in mind I learnt not to worry about what other people thought when they saw it.

Everything has been fine now and it has been a year since I had my ICD fitted. I exercise well and enjoy my life with the security of knowing I have the back up in place if needed.

Watch myheart member Paula Beck speak with Professor Sharma about having Brugada syndrome.

People may think that younger people who have been screened will find it hard to come to terms with being diagnosed with a heart condition, but it would be much harder for their family to have to come to terms with losing someone so young, because they had not known they had a heart condition that could have been monitored and treated.

My eldest daughter is 8 (Chloe) and she understands why I had to have all these tests done and why I have an ICD. Chloe also understands why she will need to be tested as she gets older. Chloe joined me on the CRY London Bridges Walk last year.

She took the pictures and information into her school and gave a speech to her teacher and class friends on why she did the walk and the relevance it had to her. Both my daughters will be joining me on the CRY London Bridges Walk this year. I think screening is a necessity in the young as this is what is going to identify people at risk, save lives and prevent unexpected young sudden heart deaths.

Watch Paula and myheart member, Joseph Tanner, debate with CRY myheart cardiologist, Dr Michael Papadakis on exercising with an ICD below.

 

  • Pauls Simmonds