Let’s Meet!

If you’re a member of our Facebook group (Ed: If you’re not, you should be! You’re missing out on a lot of great stuff that can help in your recovery) you may have seen a lot of talk recently surrounding the topic of meetups.

Meetups of survivors, families, lifesavers have been happening for a while now, usually arranged ad hoc through the SCA UK site. I have yet to hear anything but positive feedback from those who have attended,

Indeed, meetups were becoming so common, that we decided to set up a group to assist in coordinating, sharing good practice and learning from each other. This small group work under the banner of “SCA UK Regions”.

In case you were not aware, we now have representatives for most of the regions in the UK, so if you fancy arranging a meetup, or indeed have any queries surrounding what is happening in your region, consider dropping your local representative a private message. If they don’t know the answer I’m sure they will be able to identify someone who does.

The list of regional representatives can be found here.

Anyway, that’s not my sole reason for this article, I also want to tell you about the recent meetup that took place in Dalkeith, Mid Lothian on Saturday 18th January 2020.

How did this come about? I was contacted by Fay, a member of the group who we know from a previous meetup Fay had arranged to meet with another survivor, Scott… guess what, who we knew from a previous meet up. Fay suggested to me that we could maybe open this up to any other members of the group who fancies coming along.

Fay and Scott had agreed to meet at a Wetherspoons in Dalkeith , a place they had met before . A perfect venue, Town centre and easily accessible by bus and car. So with a location agreed and a date we just needed a time. 12:30 seemed to be a practical time of day and that’s what we set it at.

I created an event in the Events section of the SCA UK Facebook group and that was that. We very quickly got some response with several people interested or marked as going.

From my previous experience, if there are a few people going, I prefer to create a private group on Messenger. This allows people to be a bit more relaxed and have the opportunity to ask any questions they may have in a more private arena rather than on Facebook. It also encourages those intent on attending to chat about it online, it’s a really good ice breaker.

We are nearly 4 years since Susans SCA and it’s important for us to remember what a huge step it can be for survivors, as well as their families, to even think about meeting others. Through meetups arranged through Facebook, Susan and I have ridden that hurdle and have had the pleasure of meeting so many survivors and their families.

Taking that first jump can be the hardest, as with anything that is foreign to us. But it is so worthwhile. I have yet to hear any negative feedback on meeting like-minded people.

So off we went on the Saturday. We were expecting around 11 survivors and also family members in addition to this. As with everything, people may not manage to make it, for whatever reason. That’s okay though, these are informal meetups, nothing fancy and no pressure. We eventually found the pub and were met by a group of familiar, and some not so familiar, happy smiling faces.

The main, initial thing I find about meetups is how easy it is to get on with everyone. Why is that? I think I know the answer, we all have one thing in common, some could call it the Elephant in the room. Something that your friends and family know about, but are not sure whether they should talk about it. It’s different when you go to meetups. We all have driven a similar path, and have one thing in common. and that is apparent anytime I speak to a survivor or partner of a survivor. No icebreaker required. I am sure the Messenger chat before the day also assists with this.

We stayed and chatted for 3 hours or so everyone having similar, but slightly different stories. There was nine of us in total, a fine number, of varying ages and all with various stories to tell. As we connected I listened around and could hear familar things being said…

  • That’s how I feel
  • That’s what happened to me
  • I’ve never met anyone else before…
  • Have you been on holiday?
  • Do you exercise?
  • I’m scared too…

I could go on.

We all have one thing in common, and sharing experiences appears so valuable in assisting with recovery.

  • Have you got an ICD?
  • Do you have a monitor?
  • Has it gone off?
  • Was it sore?

I’m sure survivors are reading this with a wry grin on their face. All this will sound familiar. But what about family members/lifesavers…

  • Are you okay?
  • I worry about
  • Leaving them alone
  • I wake up and check they are okay
  • I get nervous when I’ve not heard from them.

If you are reading this and thinking all these questions and points are familiar, that’s because when you meet up, you are with people who “Get it”, who have experienced similar to you and who are also now living the new normal.

We said our farewells and I asked those attending to drop me a few lines on how they felt the meet up went.

Here is what they had to say:

I would like to thank all you guys whom I met for the first time last week. As an SCA survivor, it’s difficult sometimes dealing with the emotions with what we have been through. It was terrific to meet fellow survivors and spouses. This was the first time I had been to a meet and also the first time I had met anyone who had also survived. Is so glad that I did, it was terrific meeting all you guys and hearing your own individual stories and how you are recovering, also terrific to meet the partners and hear things from their perspective. All in all, it was a great meet and for anyone out there who is maybe apprehensive, then please put that behind you and get to a meet, it will inspire you and give you a great insight into others in the same boat

Chris, SCA Survivor

I jumped at the chance to attend my first meet up with fellow survivors that understand my wife is also a stroke survivor and to be able to talk to others in the same boat is a very uplifting experience, we appreciate the fact that we’re all different about how we approach what has happened to us but I would urge anyone thinking about attending a meet up to please go along x

Scott, SCA Survivor

It took me 18 months post SCA to find this group. We plucked up the courage to go to the GWR event a month later. It was a revelation for both me (the survivor) and him (my hero). We have been to every meetup that we can since -­ Edinburgh; Rutland; Newcastle upon Tyne; Dalkeith. we have made life-­long friends with folk who totally get us. Put simply GO, you will never regret it!

Fay, SCA Survivor

It was my first meet up and first time meeting other survivors. I was looking forward to it beforehand, especially as it was local. Overall a great experience and safe place to share stories as everyone can relate

Ryan, SCA Survivor

Hopefully, this will give you an insight into one of the meetups arranged by Sudden Cardiac Arrest UK members.

The group is 5 years old this year and what better way to celebrate than arranging a mass meetups, all over the country.

Put Saturday 2nd May 2020 in your diary and look out for meetups being arranged in your area of the country during the afternoon on that date. You can always click on the events tab on the top of the Facebook page and it will highlight what meetups are currently arranged, where and when.

We look forward to meeting again, on 2nd May 2020 to celebrate being amazing people, survivors, lifesavers, families and friends.

You are Not Alone!

…and some pics from other recent meetups…

Stowmarket, January 2020
Bath, Feb 2020
London, January 2020

Lightning strikes twice

To paraphrase the words of Her Majesty the Queen’s Christmas message, 2019 has been a bumpy road, if not Annus Horribilis.  

I had my first cardiac arrest in February whilst on a “boys” walking break in the Lake District and was resuscitated and defibrillated by my son Mark. This was followed by triple bypass surgery. We celebrated my recovery from surgery in May with a family holiday in the Trough of Bowland.  

I had my second cardiac arrest outside our rented cottage and this time my wife Sue and daughter Anna did the CPR for 12 minutes before the paramedics arrived. I then had surgery to fit an ICD and have remained alive and well and eternally grateful to my family.

JOURNEY

My heart adventures began in August 2018 when I had a heart attack (Acute Coronary Syndrome in new parlance) provoked by baking scones. This came as a big shock to me as a recently retired surgeon who thought he was incredibly fit (non-smoker, normal blood pressure and BMI, low cholesterol and a dedicated club runner with 10 marathons and more than 100 half marathons under his belt).

My angiograms were disappointing, showing diffuse coronary artery disease not amenable to stenting.  My heart function and stress test were good and myself and my cardiologist agreed that we should continue with optimal medical therapy and graded return to full activity including (non-competitive) running. The first cardiac arrest came out of the blue.  I felt fit and well and during the day had walked up the Old Man of Coniston, had been for a short run, and was eagerly looking forward to my evening meal washed down with a pint of Loweswater Gold.  With no warning, I collapsed in the pub bedroom and luckily the isolated hostelry had a defibrillator on the wall outside (the landlady’s son had died with a sudden cardiac event previously). It would be churlish to complain that my son fractured my sternum and that the paramedics cut off my favourite running shirt!

I had a textbook recovery from bypass surgery and enjoyed the formal rehab classes at the Gym. We were enjoying our family holiday and myself, wife and daughter went on a short, early morning run and during my warm down, I again arrested (apparently with classic agonal breathing).  On this occasion there was added drama as I broke a stone birdbath with my head as I fell, losing a third of my blood volume from a deep scalp laceration. Following this, I was fitted with a subcutaneous ICD and happily have remained “shock-free “ to date and have resumed driving and full activity with the exception of running.

REFLECTION

To use a well-worn cliché this has been a life-changing experience for all concerned. 

Although a difficult year for myself, in many ways it has been worse for my family who has had to witness the (albeit temporary) death of their husband and dad.  On the one hand, I feel unlucky (why me with my healthy lifestyle?), but mostly I feel very fortunate to have survived against the odds.  In particular, I am lucky that my family were there and willing and able to do effective CPR.  My favourite run was solo, off-road, on an isolated hill with no phone, so again lucky that I had returned to base camp before collapsing.

I think this has all made us an even closer family unit and I am loving seeing my two grandsons thrive (second grandson Dougie was born between cardiac arrests).  There have been dark moments for us all and my loved ones still have “flashbacks“.  Perhaps, fortunately, I remember nothing other than waking up in the back of an ambulance vomiting and being generally uncooperative…

Initially, I was bitter and twisted and resentful that I would not be able to win the Vet 70 running trophies I anticipated.  These feelings have passed, I have forgiven life and found again my eternal optimism. Time is indeed a great healer and slowly but surely our family confidence is returning and we look forward to new and fulfilling experiences (less exciting would be fine).

Steve Holt

31/12/19

No time for dancing

Yes, I can confirm you are having a Heart Attack and no, you won’t be home in time to watch Strictly Come Dancing

Attending Paramedic

It still seems completely unreal, the events that happened on that Saturday afternoon in November 2018.

Prior to that eventful day on 17th November 2018, I had not had any cardiac problems and I led a very active, healthy, happy life with my family and Dylan our dog and I even enjoyed work, running my Physiotherapy clinic.

I was at home that Saturday afternoon with my husband Jules, daughter Melissa and her fiancé Sam. I decided it was time for a cup of tea so walked towards the kitchen.

The Event

I suddenly felt the most excruciating pain in my left chest/arm and shoulder blade. I collapsed but was fully conscious and started vomiting.

My husband called 999 and the paramedics arrived within 20 minutes. I was wheeled into the ambulance, but my family had to remain outside. The paramedics confirmed I was having a heart attack and I was being taken to Essex CTC at Basildon Hospital and Jules and Melissa were to follow us there.

I have no recollection of events after this and for most of my hospital stay and even when I came home initially, but the lovely paramedics who visited me in hospital a few days later told me I was conscious in the ambulance and all I kept saying was “ please help me.”

 I don’t remember my heroes visiting me in hospital but apparently, I did speak to them and thanked them in amongst a lot of tears.

The following events are from what hospital staff and family have told me happened.

 I suffered my Cardiac Arrest as the paramedics were getting me out of the ambulance at The Essex CTC, in the ambulance bay at 3.59 pm.

They carried out a precordial thump, CPR and defibrillation and by 4.04 pm, 5 minutes later I was back in the land of the living.

This probably sounds bizarrely detailed but although the events were explained to me in hospital, I don’t recall anything of what I was told.

Consequently, after having several months of nightmares about the cardiac arrest, my death and my funeral( … I know, completely irrational as here I am!!) and panic attacks, a lovely cardiac rehab nurse whilst I was doing rehab, suggested we went through my medical notes detailing what actually happened to me.

I was grateful for her taking the time to do this for me as she explained that sometimes knowing the reality of the events is a better alternative, than my subconscious imagining horrific events. Your brain can then start to process what actually happened. She was absolutely right, the nightmares and panic attacks lessened. I understand this would not be for everyone but maybe it’s something others may consider thinking about who are suffering similar problems.

I was taken straight to the Cath Lab and the LAD artery was found to be occluded. A Stent was deployed, and the blood supply was returned to that part of the heart.

It was noted during this procedure that the circumflex artery was diseased but that was for another day.

Soaked

I apparently woke during that night and the nurses told my family that I was very upset, mortified in fact, as my bed was soaking wet. They calmed me down and explained the femoral artery that the angioplasty had been used for was bleeding which is why the bed was wet with blood not because I had had an “accident”. It shows what a weird place my thinking was at this time as I was apparently so reassured by this news that I was bleeding and not weeing myself that, I went back to sleep!

Two doctors arrived and “re-plugged “the artery, quite an exciting night for the fellow patients next to me but I was completely oblivious.

My poor husband and family over the next few days were met by me either in constant tears or saying, “I’m fine” or confused and asking people “am I dead?”.

 My family were amazed that most of the medical professionals got the more acceptable response to questions i.e.: sobbing or “I’m fine” and luckily not often the “am I dead?”

 I feel so bad now as at the time I was so unaware of everything including not able to appreciate the horrific time they went through on that Saturday.

Although I was conscious, I was far removed from Catriona the wife and mum they knew and loved. One day I was constantly swearing when they arrived which is hilarious now looking back as the “old” Catriona was not prone to this sort of outburst, but it must have been distressing for them.

I was quite upset to find out from them months later that they were never asked by the ward if they were ok during this time, or if and how they were coping with the aftermath of the devastating event that had happened.

I think this would have provided such a huge support to them if it had been forthcoming as really, they were in such as state of shock and fear whereas although I was confused and very emotional, I was oblivious to what had happened and what was happening.

However, I do appreciate that resources are stretched to the limit and all the staff are rushed off their feet keeping everything going on the ward looking after the patients.

The pain from my ribs and sternum following the CPR made even moving in bed let alone walking almost impossible but that was the tiniest price to pay to be alive once again… and of course, they would heal.

Shock

We had the biggest shock of the whole episode on my 4th day being in hospital.

The doctor told me I was being discharged from hospital as I was “haemodynamically stable” but I later learnt that my LVET was only 32% at this point, which meant I was still in quite a high level of heart failure. My husband questioned the doctor whether I was well enough to go home as I was barely mobile and “not myself” and I apparently all I kept saying I was too scared to go home yet and cried yet again (I don’t normally cry all the time you will be pleased to know).

The doctor’s reply was “you may as well be scared at home rather than sitting being scared in hospital”.

Maybe we were just fussing but the look of shock from the staff nurse to this Dr’s reply confirmed maybe our feelings and concerns were perhaps valid. More tears from me followed but off we went with our big bag of new medication both feeling terrified.

It took us nearly an hour to get from the ward to the entrance as we had to keep stopping and sitting down. I was so short of breath, I felt so weak and my ribs were agony.

Blur

Those first few days at home were a blur to me but hearing from my husband how I was and what I put him through makes me realise how lucky I am to have such an incredible person by my side.

I couldn’t comprehend what had happened, the confusion, the emotional turmoil, I was constantly crying and very frustrated at not being able to physically do anything, it must have been like a living nightmare for him, especially as for the first few weeks he told me later, he stayed awake through the night checking I was still breathing.

I am normally the person who loves to look after everyone, so I can’t imagine how terrified I must have seemed to my husband during this period and I’m sure he wondered, would things ever get better?

After being home for a week my husband was worried about how I was still struggling and not having been given any follow up out-patient appointments when I was discharged, he didn’t know where to turn.

Out of desperation he called the Essex CTC reception and explained the situation. He was transferred to the Cardiac rehab department. Although I hadn’t been referred there as I was awaiting a second Stent procedure in 2 months, they must have heard how concerned he was and asked us to go in and see them for a chat.

Counselling

Liz and Jean the cardiac nurses were fantastic, reassuring, caring and supportive and we will be forever thankful that this was the department that our call just happened to get transferred to and they decided to help.

A couple of counselling sessions were arranged in the rehab department that helped me process what had happened. I know I went to these sessions, but I can’t remember what they involved but I do know they helped me start to cope and accept what had happened.

Also, every week one of the rehab nurses telephoned me to see how things were going during that period when I was waiting to go back into hospital for the second stent.

They truly went above and beyond their duty, absolutely amazing nurses.

I must also mention the Community Heart Failure nurses that have looked after me and continue to, in relation to my heart failure, so professional and caring.  When my heart failure reduced to a certain level, I was able to start my Cardiac Rehab mid-February

3 months after my Cardiac arrest

Cardiac Rehab was great and gave me the confidence in exercising again.

The other patients in the group were lovely and we had quite a laugh. Several of the other patients had had stents as an elective procedure, a couple had pacemakers and one chap had had a heart attack.

Apart from us all being a bit breathless when we were doing the exercise part, I felt that I was quite isolated with the specific concerns that I had as a result of the cardiac arrest especially as attending these classes was all before I found the Sudden Cardiac Arrest UK Group

I later realised these weird symptoms I had were sequelae and were often a common result of surviving a Cardiac Arrest.

In my case these included fatigue, forgetting words and even what I was saying mid-sentence, emotionally unpredictable, difficulty in processing what I was reading and feeling quite anxious about whether it was all going to happen again.

I didn’t feel comfortable opening up to the rest of the class about these weird symptoms that I didn’t even understand myself at the time.

I must mention how much help, support and reassurance Paul Swindell and his website Sudden Cardiac Arrest UK and Facebook group have given me since I “found” them a few months ago.

The Podcasts are excellent and inspiring, and the medical based ones are so informative- who knew that statins not only reduce cholesterol, but they have an anti-inflammatory effect on the artery walls…amazing.

I was also interested to hear from one of the podcasts about The CARE Team that see CA survivors at The Essex CTC and follow them up with appropriate treatment and support in the months that follow.

I did wonder why I wasn’t seen by the CARE Team when I was a patient at The Essex CTC following my CA, but I later learnt that I was unfortunately just “missed” in the system.

#NotAlone badge

However, having met the lovely Dr Tom Keeble who set up the CARE Team at the Sudden Cardiac Arrest Event in Rutland recently, he arranged for me to be assessed by the CARE Team at Essex CTC and I am now being looked after by them which I am so grateful for.

Blackouts

Just before my 1st Rebirthday in November a few weeks ago I started to have blackouts that have turned out to be cardiac in nature. The first one I had was when out walking and I landed on my face, split my chin, cut my face, broke my wrist and came to with my gorgeous dog Dylan lying by my side on the pavement licking my hand.

The second one was less dramatic and a lovely chap (who subsequently kindly helped me) witnessed me collapsing into the road, no broken bones but very embarrassing.

I’ve just had a loop recorder implanted and I am going into hospital in January to have a Stress MRI. Once the arrhythmia that is causing this to happen has been identified they can treat it, so all very positive apart from another period of not driving.

I had to close my Physiotherapy Clinic following the cardiac events of November 2018, which was quite a blow, financially and emotionally.

I just couldn’t manage working full time and the extra work that running a small business entail. It wasn’t just the physical symptoms of tiredness, fatigue and episodes of being breathless, but I really feel my brain was working slower then. Forgetting words and forgetting what I was saying halfway through a sentence, as well as not processing what I was reading quickly caused more anxiety and made me lose confidence in my professional abilities and any social situation in general.

Progress

However, several months on things are slowly improving and life is getting better and I thought I would give you a few examples of the positive things that have happened since the Cardiac Arrest, which I think are good to recognise.

– I have just managed to get a part-time Physio/Hydrotherapy job in a local hospital on the bank rota. I cannot believe how stressful it was having my first interview in 20 odd years -terrifying how professional interviews are these days!

 I still remember my first interview for my first NHS job as a newly qualified physio 33 years ago. I say interview but I telephoned the Superintendent Physiotherapist and asked about the job and we had a lovely chat for 20 minutes or so and at the end of the call I was told I had the job………….those were the days!

-I have joined a Watercolour Art Class which I absolutely love. It was always something I said I would get back to when I had more time but work and life always got in the way.

–  I am back walking regularly (avoiding those pesky hills), thanks to my gorgeous dog Dylan who gave me the confidence to get out the house in those first few months and was always a constant companion in the house when I was terrified to be on my own.

Very sadly, Dylan has recently died which has been such a huge loss to us all, but he will always be my hero………I am still walking but I now listen to podcasts for the company including the brilliant ones from our Paul Swindell.

– I was referred for counselling many months ago following my Cardiac Arrest and recently I have started a course of treatment which I have found really helpful.

One thing I have learnt from the sessions that I thought I would share is realising with the help of the counsellor is it OK to feel angry sometimes about how life has changed since the cardiac arrest. It was something I have been struggling with and have never mentioned to anyone, not even friends and family as I felt it made me seem so incredibly ungrateful and not thankful to be one of the lucky 8% to have survived this horrendous life-changing event.

Recovery

All survivors know how lucky and fortunate we are to be given a second chance at living this wonderful life but if you sometimes feel angry and frustrated about things, we miss that’s OK too, it’s all part of the recovery.

I have found writing this account such a helpful thing to do and I would encourage others to do the same when they feel ready. In some way putting it on paper has made it feel less of a muddled scary experience and it gave us as a family a chance to be very open and honest about the whole episode especially as they had to fill in the huge gaps when I have no memory of events and for me to understand more about how it impacted on them.

I’m afraid I have no profound words of wisdom to end on but to wish you all well, enjoy life as much as you can and let’s face it, life will still be a mix of happiness as well as sadness and stress but being a cardiac arrest survivor gives you an amazing strength to face anything.