Dying Is The Easy Bit

18th September 2016 was a pretty normal day. It was Sunday, we had the grandson over, I cooked a roast. In the evening I complained about a bit of a weird feeling in my chest, kind of indigestion but not. I shrugged it off, went to bed and thought if it continued I’d call the Doc after work the next day. I woke up around 1.00 am with a sense of foreboding, still a bit of a funny feeling in my chest, it had moved a bit, into my throat, nothing painful. I was actually having a heart attack which at approximately 1.30 am on 19th Sept lead to five Cardiac Arrests.

I still have no idea what prompted me, but I got out of bed and somehow found the phone in my hand calling 111 for advice, whilst arguing with myself that I had important stuff to deal with at work the next day! I was making a fuss over nothing. I had no classic heart attack symptoms, wasn’t in any pain, but just felt something wasn’t right. That sixth sense,  a feeling of impending doom maybe. Despite apologising that I was wasting peoples time, and saying I was sure I was worrying over nothing there was no hesitation on their part in sending a paramedic.

About 20 minutes later, after following their advice to open the front door and turn on lights, I’d got my somewhat bemused partner out of bed and got myself dressed. Whilst being examined – ECG, BP, all the usual questions – I felt no urgency or panic and was even joking about the whole situation, apologising for wasting his time. Anthony, my lifesaving paramedic, said ‘Doesn’t look like it’s your heart, but we’ll get you to Basildon Hospital just in case.’ I was still arguing that I’d go to the doctor in the morning and felt stupid for making a fuss. Suddenly I remember saying “That really hurts now’” and felt what I can only describe as the most enormous bear hug –  I went into cardiac arrest. My ‘memory’ of it is of peaceful, black, calm nothing although this isn’t a true memory, more my brain’s way of trying to make sense of that time.

That amazing paramedic with support from my neighbour, an anaesthetist who just happened to be not on a night shift but up reading when my partner went running for her, saved my life by doing CPR & delivering shocks from an AED. I’ve since found out from Anthony that I actually had two arrests at home before coming round on the floor surrounded by people – a sea of green with concerned faces. As they lifted me out to the ambulance I remember telling my partner to make sure my daughter and grandson knew how much I loved them.

The ambulance crew with family

The ambulance crew then saved me a third time when another CA happened on the way to Basildon Hospital. I have a particular memory of a very reassuring lady, Teresa, on board and just remember that crushing feeling, and saying ‘It’s happening again’ before the blackness took over. I arrested twice more that night in hospital but remember the first and third times only. There’s a vague memory of coming to in the cath lab, of seeing my heart on a screen as they were inserting a stent, and having a conversation with a nurse about my nail varnish!

My poor partner is the unlucky one who witnessed the whole thing. Apparently after that first stent was fitted, I had a further arrest, was resuscitated, and was taken back for another stent to reopen the first.  Talk about a ‘chain of survival’ – right place, right time, and all because of a phone call that I still don’t know why I made.

The Immediate Aftermath

I was in hospital for two weeks and had three stents in total. I’m told I came round two days later thinking it was still Monday morning and demanding someone call work to say I’d be late. Those first days are a bit of a blur but I do remember them. The fantastic doctors and nurses, visitors coming and going, beeping machines, oxygen masks, being referred to by hospital staff as ‘the little miracle’, other patients leaving CCU and wishing me luck, telling me how pleased they were to see me doing so well, and an elderly gentleman who told me he’d been praying for me although I hadn’t even spoken to him. But mostly an absolute under appreciation of what had happened to me! I wanted home, I was fine, I wanted ‘normality’! Little did I know….

I wasn’t fine.

Normal wasn’t normal.

Dying is the easy bit – surviving is infinitely harder. 

For the first few weeks I was in an almost euphoric haze of ‘Wow, I survived death’. Then overnight, reality and, with it, an emotional upheaval like I’ve never known. I never understood the meaning of the word ‘sadness’ until that moment. Bam, the tears started and felt like they’d never stop. Would I ever feel like ‘me’ again, when would life return to ‘normal’? 

I’ve been left with a number of physical medical problems: emotionally & psychologically the fallout from surviving death is hard to cope with, and fear, anxiety, depression & PTSD is, I now know, common in cardiac arrest survivors. 

And now … ?

Life changes! My memory is shot! I never did make my meeting or even make it back to work. I don’t have the independence I’d worked so hard for. You lose some of yourself somehow. I felt like I’d come back, but had left something behind. My personality has changed; I suffer fools less gladly, I’m calmer in some ways, but so much angrier in others. I don’t want to ‘sweat the small stuff’ and I want to really live.

I realised that we all imagine that dying is the end, your belief system is completely shattered when you survive dying! I was so blessed to, one night while sitting in tears, stumble across an amazing Facebook group, Sudden Cardiac Arrest UK. I posted how I was feeling and the response was incredible. People out there understood, I wasn’t alone, and  I wasn’t going completely insane!  This group has helped make some sense of my new ‘normal’.

Despite all that, I know statistics show that only 8% of people suffering a cardiac arrest at home survive! Thanks to EEAST and Essex Cardiothoracic Centre, I consider myself immensely lucky and couldn’t be more grateful to those that saved me that night. 

Charlie with daughter and grandchildren

I am now 48 years old, and thanks to these amazing people I am still here to see my 5 yr old grandson, and newly born granddaughter grow up. I’m here to continue living & loving my family and my life. 

On the 9th June 2018, I was privileged to become a Guinness World Record Holder along with 126 others from across the UK, for the largest gathering of cardiac arrest survivors in one place, at Basildon Hospital. This was a true celebration of life.  And I’m currently the Chair of a local group in my village, working to provide public defibrillators in our community.

I’ve been involved in instigating a Hospital Heroes award for my Cardiologist, who supports SCA UK. He won! On my 2nd anniversary, 19th September 2018, I finally got to put names and faces to my lifesavers! One of the most emotional experiences of my life! How do you thank people for the gift of your life?

Charlie and the ambulance crew (close up)

I truly cannot say ‘Thank You’ enough, or find ways to express my gratitude to all those who made living possible! It was an overwhelming day, for the four paramedics and ambulance crew, as well as for my family and me. I got some questions answered too, which helped with some of my ‘lost’ moments. They got to see the results of their work, and seemed very happy at the outcome. There’s no describing the emotions running through me when I finally met them.

Yes life is different, but time, my family and friends, SCA UK (& the ongoing support of a very good psychologist!) continue to help me make some sense of it all. It’s been a good excuse never to cook a Sunday Roast since….

The cardiac arrests may have tried to take my life, but I’m a survivor.

I’m taking ‘ME’ back!

I’m not a poet, but I wrote this a while back about my experiences:

Funny feeling in my chest
Time to lay down, time to rest
Awake, foreboding, don’t feel right
Don’t yet know I will die tonight

Paramedic checks my heart
Massive bear hug, just the start
Peaceful, black, time stops still
My body gives in, it has no will

Ceiling, faces, shining bright
Hurts my eyes, this isn’t right
Ambulance, sirens, wailing, shrill
My life will end four more times still

Watch my heart upon a screen
Chance of surviving is pretty lean
See the arteries, talk of clots
Alarms go off, my heart just stops

Hospital, doctors, they didn’t shirk
I think I might be late for work
Worried faces, a loving look
Five cardiac arrests, my life they took

Life goes on, but not the same
Something missing, no one to blame
Sadness, panic, emotions raw
No one knows the things I saw

Pain, confusion, numerous meds
Days I can’t get out of bed
The aftermath of death is hard
The odds all changed on the turn of a card

I died that night but yet I’m here
What’s the reason? It’s not clear
My grandson’s smile, a hug, a kiss
The things I’m grateful not to miss

Life’s upside down, it’s round & round
Sense no longer can be found
Normality, for that I strive
I died that night – but I’m alive.

Charlie Dickens

Atherton, almost out

By Elaine Spector

My alarm went off at 5am on 8 July 2018 and I got up and had a breakfast of scrambled eggs and toast in preparation for a 60 mile charity bike ride from Manchester to Blackpool. My cycling partner, Beverley, arrived at my house in Lytham St Annes at 6am and we set off shortly after for Manchester with me driving. I remember none of this.

Here is my story as recounted to me by those involved as my last memories are of watching the England v Sweden football match the day before with about ten of my daughters’ friends.

On the way to the start

At 9am, approximately an hour into the cycle, I suffered a Sudden Cardiac Arrest as I was cycling through Atherton. I swayed onto the opposite side of the road into the path of an oncoming vehicle. The driver braked, I fell! There was no impact with the oncoming vehicle. The loud noise heard by others was not due to impact but that of the driver’s equipment in the back of his van catapulting forward when he braked so hard and suddenly.

Beverley heard the loud noise and turned around to speak to me and realised that I was not there. She saw the commotion and upon arriving at the scene realised it was me on the ground. Someone had called the emergency services but said I was breathing so I was classified as a non urgent category 4 with an approximate 45 minute wait for an ambulance. I was actually a category 1 emergency when a response team should arrive within 6-7 minutes.

Graham Jones, one of the race marshals on motorbike and a retired paramedic, came upon the incident and immediately realised that I was in fact agonal breathing (the heart is no longer circulating oxygenated blood) and that death was imminent. Unbelievably, Graham had an automated external defribillator in his pannier and immediately began defribillation and CPR.

Meanwhile, it’s mayhem with hundreds of cyclists being diverted and vehicles unable to pass. Sitting in the traffic jam is Wigan and Leigh Fire Brigade on their way to the Rivington Pike fires (which had been burning for about three weeks) to relieve other fire crews. Stuart, one of the firecrew, took over from Graham.

Chloe Hall, 24 years old, a cyclist who is a nurse on the CCU at Liverpool’s Walton Neurological Hospital ignored the diversion and arrived on the scene and realised that I needed oxygen immediately as I was blue (cyanosed) and the reading on the sats probe on my finger was 38%. Chloe asked the fire brigade if they would possibly have a Guedel (oral airway device) and miraculously they did! Chloe took control of this and shouted instructions. CPR and defibrillation were given to me for 30-40 minutes by three people until the ambulance arrived. Miraculously, I had no broken ribs.

I was taken by ambulance to Royal Bolton Hospital and placed in the Resuscitation Area in A&E for a few hours before being taken for a Cat Scan. On the way to having the Cat Scan I had a seizure so I was put in a medically induced coma and given the scan. At approximately 3.30pm I was taken to Wythenshawe Hospital, still in a coma, for a heart scan. I was at Wythenshawe for about two hours then taken back to Bolton Hospital and admitted to the Intensive Care Unit. The following day I was given a brain scan as neurological damage was possible due to lack of oxygen when I collapsed.

Awake

I was slowly brought out of my coma and by the third day I was aware of my surroundings but with no re-collection of events. Thankfully there was no brain damage. However, no obvious cause was found for my SCA and it needed further investigation.

Within a few days, to everyone’s amazement, I was transferred to the Critical Care Unit. After a week I was given the authorisation to transfer to Lancashire Cardiac Centre which is nearer to where I live, to undergo more tests. I had about three procedures at Blackpool Victoria Hospital all of which left the specialists baffled. They could find nothing wrong with my heart. Everything appeared healthy and was functioning normally. I was idiopathic.

As no heart defect could be found it was decided that I would be fitted with a Subcutaneous Implanted Cardio Device – a defribillator as a preventative measure. A day after my implant, I was discharged from hospital, three weeks after my SCA.

I was being called The Miracle Woman and one cardiologist said “not only were the stars aligned for you but the planets were as well” and looking back this is so true. I had been clinically dead and was very lucky to now be alive. The sequence of events that unfolded that morning were serendipitious.

Thank You

I have so many people to thank for my being here today.

Graham Jones who upon arriving at the scene realised my breathing was agonal and miraculously had a defribillator and kept on giving me CPR until more help arrived. I would not be here had you not passed the incident. (I’ve since met Graham three times).

Chloe Hall for her quick actions, knowledge and professionalism. Chloe was ahead of me on the cycle and luckily for me, she and her fiancé had stopped for 10 minutes to chat with a friend who lived along the route. I obviously had my accident just after I had passed her. (I’ve since met Chloe when she came to visit me at my home in September).

Wigan & Leigh Fire Brigade who were stuck in the traffic jam my accident had created and came to help. Thank you for having the oral airway on your fire truck and hank you for assisting in my resuscitation.

The Paramedics who arrived at the scene and kept me alive on the way to Royal Bolton Hospital. The highlight for me was learning that you referred to me as “female, approximately 40 years of age”!

Royal Bolton Hospital and everyone there involved in my care to keep me alive especially in those first three crucial days. Thank you to the ICU and CCU team. Every one of you were kind and caring as well as professional. I’m not sure I should say this but you all made my stay with you an absolute pleasure.

Lancashire Cardiac Centre, Blackpool one of the best cardiology centres in the UK at the forefront of new technology and new procedures (and only 6 Miles from where I live). Everyone here was brilliant and I was happy to place myself in their care. Thank you to the team on Ward 37 and everyone else I came in contact with on a daily basis. I kind of miss Ray the janitor (he cycles to work every morning at 5.30am) who chatted with me very early every morning! And thanks to the anaesthetist in that state of the art operating theatre who let me listen to Einaudi (I bet you turned it off as soon as I went under)!

The NHS for which I have great respect, admiration and gratitude.

Beverley Esposito my cycling partner and friend who had to watch as everything took place meanwhile giving as much information as she could about me. This would not have been easy to remember in such a situation. She also had the responsibility of calling my daughters and meeting them at the hospital as well as trying to keep them calm throughout the day whilst she herself remained calm. Beverley also got names and numbers of people who helped at the scene to keep them updated on events.

Keleigh 24, Courtney 22 and Camryn 19, my three wonderful daughters. Sorry for scaring the daylights out of you. What a tumultuous three years you’ve been through and you’ve been so strong, mature, brave and courageous throughout.

Llewellyn Boyer-Cartwright my brother who was travelling home from Heathrow to Nassau at the very same time as my accident was happening. Twenty four hours later he was back in the UK so that my three girls would have a close and senior family member to stay with them and support them. He Also attended my daughter Courtney’s university graduation in my place.

Donna Maura my sister who relieved Llewellyn two weeks later and took on the maternal roll.

James (I’m sorry but I don’t know your surname), who helped at the scene.
I vaguely remember that you visited me in Royal Bolton Hospital and that you looked like the actor Jeffrey Dean Morgan.

The Van Driver for his quick reaction to avoid a head on collision into me. I’m very sorry to have frightened and upset you.

Janette Dorricot who was behind the van and transported me and Beverley’s bikes to her home and kept them safe for a few days.

Family & Friends – thank you to so many of you that visited me whilst I was in hospital and to everyone who sent me messages, cards, flowers and prayers. Lastly, thank you for all your offers of help especially now that I’ve been disqualified from driving – subject to review in six months!

I can never express enough gratitude.

9 Months Later

I left the hospital on 28 July 2018 and August was quite surreal. My daughters kept checking on me if I was sleeping too long due to extreme fatigue, the effects of anaesthetic, the pain and soreness of the implant, visitors and generally getting our heads around what had happened.

During the following months I had numerous appointments at Lancashire Cardiac Centre and I can only commend everyone that I came in contact with during my various tests for their professionalism, kindness and care.

After being on Bisoprolol for 6 weeks (the leaflet states a possible side effect is hair loss after 6-8weeks) my hair began falling out in handfuls which really upset me. I had already been through so much so losing so much hair was devastatingly out of all proportion. After my SCA my thyroid levels were very low and I was told that after a SCA a patient’s nutrition levels are usually severely low and muscles very weak. These were all possible contributing factors. My cardiologist Dr. Chris Cassidy has been very supportive and as all my tests showed nothing wrong with my heart, he agreed that I should gradually reduce my dosage and eventually discontinue Bisoprolol. The Bisoprolol was also making me very tired, sluggish, gave my blurry vision and cold hands and feet.

Assessment

In November I was contacted by Bolton Hospital, where I was first taken after my SCA, to have a psychological assessment and to see their cardiologist so that they could complete my discharge. Everything went smoothly and both the cardiologist and psychologist were pleased with my progress. Once again, I must commend the NHS in my treatment.

Another physical and psychological hurdle was exercise. At the end of September, two months after my SCA I got on my bike (with my friend Bev who was cycling with me when I had my SCA) and cycled 10 miles very slowly indeed. Before my SCA I was cycling between 40-60 miles two or three times a week. I have since accomplished a 30 mile cycle (November) and I’m looking forward to getting back on my bicycle in the Spring. Slow and steady.

Beat Night

On 7 November myself and a few dear friends organised a Charity “Beat Night” to teach 80 people CPR and how to use a defibrillator. Training was given by safety experts REAX of Blackpool. The money raised was donated to the Blood Bikers for which Graham Jones (the marshal who had a defibrillator) volunteers. We are now in the process of raising funds to hopefully purchase two defibrillators to be placed in popular areas of my hometown.

Another hurdle was travelling abroad in December. My cardiologist, Dr. Cassidy, felt that I was fit enough to do so and gave his blessing. On the 14 December 2018 with travel insurance in place, and no problems at airport security when I produced my medical ID card, I very nervously set off on a ten hour flight. After my initial nervousness I eventually relaxed and tried to enjoy the flight but I did feel much better when my feet were safely on the ground.

On my holiday I tried Stand Up Paddle Boarding on the ocean which I was apprehensive about since it involved raising your arms up and over alternately. I was able to do so without feeling uncomfortable or as if my S-ICD was being stretched and pulled. Of course I wore a life vest and was always accompanied by someone. I also went on a speedboat with three powerful engines and I took the precaution of sitting at the front of the boat as far away from the engines as possible. I thought, better safe than sorry.

In January I attended a Snow Patrol concert in Manchester and again I was a bit nervous in case the loud speakers and noise set off my defibrillator but everything was fine.

New Normal

Life has changed dramatically and certain things I took for granted or instinctively did is now thought about in great detail

  • What if my S-ICD shocks me while I’m taking a bath?
  • Can I drown before the defibrillator kicks in?
  • What if I’m shocked while I’m in the shower and fall, hit my head and become unconscious and freeze to death because the water is still running.

I accept this is now my new normal and I know that I have been very lucky to have survived a SCA because I was surrounded by people who recognised what was happening and knew what to do.

It is now almost 9 months since my SCA. My body has odd aches and pains, I have myoclonic jerks which have improved, my body temperature has gone haywire, my gums and teeth hurt, I still lose words in sentences and I’m sensitive to lots of noise and chatter around me but according to my daughters my memory has definitely improved. I am getting stronger physically. I have started cycling outdoors and I go to spinning classes.

The good news is that I re-applied for my driving license on the 1st March and received it on the 18th March. I can’t thank my family and friends enough for all their help. They not only provided me with transportation but have supported me on my health journey and basically kept me positive, upbeat and socially active.

Beyond the road to SCA

Post by Mike Munson

This is the second part of Mike’s story, you can read the first part here.

A few days later I was released from hospital and having had quite a scare (possibly more so for my family as I had no memory from that whole week), I set about trying to get back to normal, although not sure what that “new normal” might be.

Not wanting this to happen again I googled advice and found the BHF website very helpful, so no dog walking or vacuuming for 12 weeks, but also what I could do a walking started on day 1.

I found out that had I lived locally to Colchester Hospital (where I was treated) they would have arranged Cardiac Rehab, but as I was “out of area” I had to sort it out myself.

Living in Mid Suffolk I found that my local gym had classes, which I eventually attended (once the nurses accepted that I was entitled to the 8 week course). I found this very helpful and progressed really well. I enjoyed the circuit session and repeated them a couple of times a week at home to supplement.

Giving back

I was so amazed at what had happened to me I started thinking about the various things to improve the stats, about fatality rates from “out of hospital Cardiac Arrests”. So a week after leaving hospital we arranged two CPR training sessions at my running club, and I was able to say a few words to the 50 or so people who turned up about how people with just a little knowledge can really save a life by just having a go!

On Tuesday evenings after coaching at my running club a small group of us have a quick beer at the local rugby club. I had already checked out to find we only had two 24/7 defibs in town and none near our playing fields (where Rugby, Football, Cricket, Running and plenty of walking takes place every day).

I spoke to the barman and said I would like to do some find raising to get one fitted on their external wall, he agreed to speak to the rugby committee and when I went back with some ideas a couple of weeks later to meet the secretary I was shown a brand-new defib fitted already. They apparently decided in view of what happened with me (&  other incidents they had heard off) they would just allocate funds immediately.

Amazing!

I then found out we had a paramedic in our running club who ran some more CPR training both for our runners and later on in the rugby club. All of these sessions where done by off duty paramedics free of charge, wonderful people!

So I finished my rehab and was passed to what they called the Phase 4 rehab instructor in our local gym. I was given a special survivors rate at the gym which was most welcome and was looking forward to gradually improving my fitness and thinking about what I could do to raise some money (& what for).

What goes around…

I noticed that a fellow survivor (Jonathon Jenkyn ) living in neighbouring Ipswich was doing his 100th parkrun since having an SCA in mid December 2017, so I contacted him and we meet on a very cold day in Ipswich and he kindly jogged (& walked) round much of the course and afterwards we chatted to BBC Radio Suffolk about our incidents and the importance of people learning CPR.

I then found out that after his SCA he had organised some CPR training for runners in the Ipswich area and two of them had worked on me!

By this time I had started to do some very gentle walk-jogging around my home. However, on Dec 18th I found an elderly man prostrate on the frozen path near my home. One bystander commented he was probably drunk, but  I kneeled down and found he was breathing and he wasn’t happy bringing called a drunk. With another man, we tried to take him home but I was too weak so we waited for the ambulance which carried him to Hospital.

A couple of hours later I went out jogging (heavily wrapped up against the cold) and within a couple of hundred yards and with no warning I completely blacked out and crashed into a brick wall. A dog walker found me and initially I didn’t realise what had happened, then it dawned on me and obviously my ICD had done it’s job and I walked slowly home.

We weren’t really sure what had happened so called my GP. I explained on the phone and apart from a bloodied face, which would have been worse if I had not had a buff & woolly hat on I was feeling OK. The GP said she would send a note to the hospital.

Indigestion?

A couple of weeks passed and by now I had started to experience upper arm and chest pains mainly when walking uphill, but also during the night, which would be relieved by a burp after a few minutes. This was actually quite scary but the GP (again making a diagnosis on the phone) suggested it was indigestion and perhaps I could take Rennies? I did try them but it didn’t seem to help.

Then after Christmas, I contacted the local hospital to see what had happened to my GP’s message. I was told it had been passed to Papworth and I should follow up with them. As I had my 6-month review coming up on Feb 16th I asked if they wanted to bring it forward and I was told no it could wait.

Later in January, I got a call from the home monitoring team at Papworth to do a download. They called me back to confirm that it had triggered on Dec 18 but nobody needed to see me at the moment as I was due to see my local cardiologist on Feb 16th. However, my chest pains and upper arm pains continued regularly (ie most days at least once).

Devils Punchbowl

On Feb 11th some friends of mine were going for some long distance running in the Surrey Hills and asked if I wanted to do a walk in the same area. As I was going to be with plenty of other people I agreed and on a cold February day we set off. Around the 15 mile mark (by a place known as the Devils Punchbowl) I felt a thump in my chest (not like being kicked in the stomach as had been suggested by a doctor to me) and I blacked out again.

This time I remembered what happened and was annoyed with myself for thinking perhaps I wouldn’t get through this time. Anyway when I came to a group had gathered around me, I explained what had happened and said I could walk now to the next checkpoint and retire. A nurse told me (in no uncertain terms) that I should stay where I was and she called 999.

It was very cold sitting on the rim of the punchbowl and the other walkers put all their spare clothes on me and put me on a bivvy bag. However, I just couldn’t stop shaking. They wanted to move me to a more sheltered spot but the control was telling them not to move me. However, they couldn’t locate our position and eventually with some not very nice words exchanged I was moved, then a 4X4 was spotted, stopped and I was loaded into the back. It seemed the ambulance was near the main road about 10 mins away. The driver was wonderful and although he didn’t know where to go eventually found the ambulance and I was rushed to the Royal Surrey.

In A&E I did try to get them to let me go home but they insisted on keeping me in. During the questioning, I was asked if I had had an angiogram and I said I didn’t recall having one and there was nothing on my discharge sheets from either Colchester or Basildon (where my ICD was fitted) about an angiogram. The following day the consultant told me he had called Basildon to confirm that I hadn’t had an angiogram which surprised him, so I was immediately fitted in and it showed 2 arteries narrowed, requiring a double bypass. A few days later I was transferred to St Georges, Tooting and had what appears to be a very neat operation.

New man

Happy now that I was being told eventually I will be like a new man, I decided to raise money for my local Hospital who were building a new cardiac unit, which would mean not everyone would have to be sent from my area all the way to Papworth. On behalf of my running club, I have been organising a series of trail runs. We charge a nominal £2 for instructions and in 2018 I arranged 21 events in Mid Suffolk. The club where very happy to support West Suffolk Hospital cardiac unit and in addition the money was shared with CRY (who would earmark cardiac tests for young people in Mid Suffolk).

One evening nurses from the hospital came to our event and ran Afib tests. Unfortunately (or should I say, fortunately) they only found one person with Afib (I have it permanently). We managed to raise £3600 during the summer, the hospital reached its target of £500,000 and the new unit was opened in November and I was lucky to be invited.

Again I self-referred for cardiac rehab and as they remembered me I got on a bit quicker although the improvement was slower this time. During the months after the surgery, I had some issues with drugs. Initially, I was told to take codeine to relieve pain, I soon found myself constipated which obviously wasn’t very pleasant and I decided I preferred pain. Then I developed a dry cough which wouldn’t go away, and it wasn’t til one of the cardiac nurses asked me how long I had had it that she said it was probably the Ramipril. When I spoke to my GP he changed it and said 6 weeks and the cough will go, so, sure enough, it took 6 weeks.

Then the statins I was on gave me leg cramps every day. Now I am on a different statin I don’t have that problem. I developed a lung infection during the summer and the GP gave me an ECG, which he didn’t like the look of. He did compare it to one done after my original SCA but before my surgery and sent me to A&E. The regular doctors in A&E weren’t too happy either thinking I had had a Heart Attack. A blood test proved I hadn’t and they just said this was now my new normal.

A couple of things on reflection when there was an emergency…

  • The NHS (and bystanders) where all brilliant and certainly I wouldn’t be here without them
  • I don’t understand why so many do not do the rehab
  • Certainly, in my case (and I am sure in most cases) it was worse for the family as I didn’t experience any of the pain (apart from post surgery)