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The Night It Happened…

I woke up on the floor, arms outstretched, it felt as if Ryan was waking me from a deep sleep, for a moment I thought I was in bed being woken to see to the kids!!

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Have you ever sat on the sofa eating dinner and watching TV?

Yup, that was me and the next minute I was in cardiac arrest. I woke up on the floor, arms outstretched, it felt as if Ryan was waking me from a deep sleep. For a moment I thought I was in bed being woken to see to the kids!! Then I realised my vision was blurred. I was on the living room floor. Ryan was on the phone shouting my name and asking if I was OK. I felt drunk responding in a fog. Then the paramedics arrived and suddenly I realised there was a problem.  I felt heavy. They sat me up and did some checks and an ECG.  They looked at it and then rechecked the lines, and looked again. They hadn’t seen this before… once Ryan had changed me (I hadn’t even realised I’d wet myself from having the seizure) I was loaded into the ambulance. I felt so sick, but they were so lovely and reassuring. I’m sure I was waffling rubbish! I felt very sleepy… once in the ambulance, the paramedic rang Bristol and sent my ECG over. He was very honest, saying “I’ve not seen this before, so I want to check if we need to go straight to Bristol or Gloucester”. Luckily they said that as I had no chest pain Gloucester was OK…

Being admitted to the cardiac ward

There was no real explanation as to what had happened and what was wrong with me, but suddenly I realised that they weren’t going to be sending me straight home.  In fact, it was quite the opposite. Their medical interests had pricked up and they even asked if they could keep a copy of my ECG for their students to study. I felt like saying, “maybe someone can start explaining it to me first!?” But of course I  didn’t. Now I think how amazing it is that my ECG may teach another doctor how to spot the signs of brugada syndrome.

I was taken to the ward, a ‘unisex’ ward that was all men! Oh the joys… it’s now late at night so they were all snoring and farting!! Enough to send me insane… Ryan’s not even allowed to breath loudly near me!

So Ryan was sent home. I was left all alone in my cubicle behind the curtain… what the hell has happened? Things like this don’t happen to me… my babies were going to wake up and I wasn’t going to be there. The questions will start and we don’t even have the answers. I was in shock. Too frightened to sleep. I just lay there for hours and hours….

I can’t quite remember when, but the doctor came round and broke the news that they believed I had brugada syndrome. I lay there numb, I had what…??  I sent messages to family and started to google NHS website… brugada syndrome aka sudden death in adults…

shit.

Come and Eat Cake! 


Why fundraise?  Why do anything? 

I’m not entirely sure why I feel compelled to be part of a funraiser since being diagnosed with brugada syndrome. But I feel I’d like to give something back and to be part of the team of amazing people at the charity ‘Cardiac Risk In the Young’ (C-R-Y). C-R-Y have already put so much into their research and into diagnosing such rare heart conditions that without their knowledge, I for one, might not have had such a quick diagnosis and have received the necessary treatment to carry on leading a normal life. Thanks to their fantastic research, the procedures that are in place allow me to live in safety. For those that haven’t been so fortunate, C-R-Y supports the families affected by their loss. I can’t imagine how difficult that must be. Having been faced with a pretty close encounter I can say I struggle with the thoughts of what could have been, but luckily not the reality. As we wait for genetic testing, I pray to God I never do. 

Cardiac Risk in the Young aims to reduce the incidence of young sudden cardiac death through, awareness, support, screening and research. They rely on fundraising and donations. 

So not knowing how I could get involved – I saw lots of marathons, bike rides, walks etc… and then I saw the C-R-Y Raising Awareness week, 18th- 26th November. Sounding more like it… oh hang on… The C-R-Y Great Cake Bake!!  Yes! Now your talking.

As a massive cake eater and baker I felt this would be a perfect way to start my fundraising…  what could be better than making cakes, eating cakes and raising money?!

So with the support of my lovely family and  friends I will be hosting the event at the Jelly Roll Cafe in Tewkesbury, 10am – 12noon on Sunday 26th November… more details to follow.

I would love to see you there as this truly does mean a lot to me. For those that can’t make it I will be setting up a fundraising page, if you would like to donate your coffee and cake money instead… and I’ll step up and eat it for you! 

We will also be running a raffle of lovely prizes. We have a few lined up already and we would be very grateful to any local businesses who’d like to contribute more Anh cake makers who would like to donate any sweet treats then they’ll be gratefully received too!

 I’m fine…


Last night my friend and I watched the family of pukka’s at Cheltenham Literature  festival, they covered a range of topics when parenting and albeit very funny there was a serious message too, on their flex appeal for flexible working for parents. However there was a line in particular that struck a cord with me, how as mothers we say “I’m fine” when asked how are you? 

As if saying any other reply would be a sign of weakness, that we would be admitting that our so called perfect lives aren’t all that we hoped it would be or we would at least like it to be perceived as perfect.

Why is this? Why is it we aren’t ok to say no I’m not ok, I’m having a shit day! On what ever level that is?…. 

This made me think ( again! Dangerous I know!)  that my friend of 7 years and I are actually pretty honest especially with each other, if anything I’m sure we are over sharers! Having both got 3 children and meeting after our firsts I think we both felt relieved to meet someone to share all that goes with having children the ups and the downs! Infact there’s nothing we love more than a good moan over a cuppa! We’ve even been known to send rant messages written in rage! just to off load! Usually caused by our beloved children or husbands but phew it makes you feel so much better and to know it’s “normal” everyone goes through these feelings, but i do also know people that don’t share feelings and give the impression of perfection which can be intimidating and surly exhaustingly unrealistic or maybe it’s through the fear of being judged?  Or maybe just maybe they really do have their shit together and everything is perfect…. ( I really don’t want to believe this is true!) 

So I found myself asking even as an over sharing person who wears her heart on her sleeve and with a face that usually says it all, good or bad! That when asked lately “how are you” my imitate reaction is “yes I’m fine” 

Like saying anything but wouldn’t be the right reply maybe the fear that my reply would make others feel uncomfortable? 

I’m lucky I do chat to close friends and family but still there’s a part of me that feels I have to be the strong one and show everyone I’m fine, it’s all fine because still some of the what’s ifs aren’t answered and should my family members or children be diagnosed I don’t want to make it worse for them. What if they are diagnosed but without symptoms, it won’t be as bad? Or maybe its worse or all the same, who knows!? 

I’m sure the fear that gets me still is the reality that I just might not have been here. Maybe day to day I am fine but then I go places or hear things that gets to me and then I’m not so fine,

 Maybe fine is the answer you give without thinking it’s neither one or the other it’s not fantastic but it’s not terrible. Maybe fine is the answer you give before delving deeper either way depending who asks the question? 

Moving forward with Brugada…

We’re a team and now is no different to any other challenge we’ve faced and humour has helped lift the mood!

Since looking into brugada syndrome my sister found a charity C-R-Y that supports cardiac risk in the young. They want to spread the word to young people to get tested and to be aware…

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I’d like to help others and I’d like to support the charity. I haven’t quite worked out how yet but will be thinking of ways and will let everyone know when I do!

Family friends and so much support…

Well it goes with out saying that Ryan, my partner in life and father of my 3 amazing children, is the real hero. He saw it all and reacted so quickly, he’s the one who’s here for me 24hrs a day running around after me and the kids.  It’s been hard for him as he saw me lifeless. To get the image of me not breathing out of his head is hard… not to mention that now I’m home if I don’t reply to messages or answer the phone straight away he panics that something’s wrong. He’s also getting his head around my thoughts and feelings, but together we’ve got this. We’re a team and now is no different to any other challenge we’ve faced. Again, humour has helped lift the mood! Ryan said to me on his first visit to me in hospital, “for a minute I thought I was getting the mortgage paid off” that twinkle in his eye! Cheeky bugger… he did it again… he made me laugh when I was about to cry!

My friends have been amazing, messaging every day whilst in hospital, visiting me and keeping me smiling! Their support has been invaluable. Listening to all my thoughts and worries without judgement, just support. It’s times like this that you really do value your girls… Not to mention my family that have all pulled together helping with the kids, shopping and cleaning the house and again just the endless messages of love and support… I like to joke that I was just testing how much everyone loves me!

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Thoughts, lots of thoughts… 

I’d like to think I’m a practical person and take things in my stride, always trying to remain positive, and brugada syndrome should be no different right?

I’d like to think I’m a practical person and take things in my stride, always trying to remain positive, and brugada syndrome should be no different right? But I’ve been thrown by how I’ve felt at times! I’m not one to just cry… ( I normally only cry at TV programme’s).

In hospital I cried most mornings, but even then I came to see that it’s not all bad. As a family we haven’t suffered much in the way of tragedy, we didn’t really have anything to moan about. Unlike the ladies in the ward with me. This one lady was not only in with her own heart condition, but had lost her husband a month before, her one son had died and the other son was suffering from face cancer… I mean seriously… it does make you stop and think. Really what was I crying about? I was still alive.

But still you can’t stop your thoughts can you? I had nights just lying in bed awake worried to sleep, thinking and thinking… once the device was fitting I lay there wondering. I wonder how painful it’s going to be if it happens again? what will the defibrillator feel like? Almost just waiting… suddenly you become so aware of your heart beat, one night in hospital I had a moment when it was racing. First of all, I just thought I was imagining it, but then I told the nurse and he checked the monitor I was wired up to. Yes it had had a moment of 145bpm. Scary but I felt reassured that I wasn’t making it up!

I worry that this condition is hereditary for my family and for my children and although we will be having genetic tests done, and if needed procedures will be put in place, you can’t stop the worry you feel as a parent.

I’ve felt so upset watching the kids playing, knowing that that night could have very nearly been the end. The end of me getting to be apart of it all and that feeling I could have been robbed of mine and their futures. I know it hasn’t happened, but I was lucky so so lucky.

Another blow for me was being told I can’t drive now for 6 months! And 6 months thereafter any further attacks. So my independence has been taken, routines have to change, but it can be done. Then my mind has started to wonder – do I want to be responsible for the kids in the car and other people on the road… what if?

But then, what if nothing ever happens again, ever?!

I’ve also gone from dreading it happening again to wondering if it happened again maybe I might see a sign or symptom, so I’ll know when it’s going to happen?

Because what if I’m crossing the road, what if I put my children (my youngest only being 2 and a half) in danger?

Drinking alcohol has to be done sensibly.  I think mainly as dehydration is one of the key triggers. For me, the day it happened I had 4 cups of coffee and no water all day, well that’s school holidays for you – no time to think about me!

So water now has to be a must. I haven’t had a drink yet as I’ve been taking painkillers but I’m sure I will in time.

How would the kids react? 

So far we have drip fed information, so not to scare them. So far they know I have had a cool gadget put in to keep me safe! And if I was to faint what would you do? Our eldest is almost 8 and said “I’d call 999″… phew!

 

Life Goes On…

Not even two weeks after the operation I was camping with all our friends and their kids too… I wasn’t allowed to lift a finger! There has to be some perks!

Not even two weeks after the operation I was camping with all our friends and their kids too… I wasn’t allowed to lift a finger! There has to be some perks! Cracking jokes that if, like last year, our friends car broke down I could always kick start it! Humour has to be there to get you through! 


Having so many friends on hand meant help with the kids and that they were all entertained. Being away from home actually meant I didn’t try and carry on doing the usual jobs like bending down picking up toys off the floor!

Before we went, sleeping on the air bed was a concern, but plenty of pillows and codine before bed got me through!  Plus I got tea in bed in the mornings!! 

 What is it about being by the sea that seems to make everything all ok? For me anyway, it’s a sense of calm. Maybe it’s being away from the rat race of life that chance you get to just sit, take a deep breath of sea air and take stock.  Watching all the children play without a care in the world. Making memories in the simple things, just like we did a children. Because digging the biggest hole just doesn’t get old!! 

I found it quite overwhelming at times that these were things that I could have missed out on, and knowing that everyone would eventually get back to living without me. My mind would wonder, to how my children would cope, how it would change their future, what would they become?…

 

After the Op and Getting Back Home…

One of the biggest shocks for me was feeling quite as bad as I did after the op.  I’d spent 10 days in hospital feeling completely well, because for me I didn’t suffer any symptoms of brugada syndrome before or after my cardiac arrest.

One of the biggest shocks for me was feeling quite as bad as I did after the op.  I’d spent 10 days in hospital feeling completely well, because for me I didn’t suffer any symptoms of brugada syndrome before or after my cardiac arrest. So other than boredom, the torture of being away from my 3 babies and Ryan, and being stuck in a cardiac ward, I’ve been relatively well.

​For the surgeons it’s a straight forward procedure. They made it all sound so simple; a nights stay and home the next day once all had been checked. So for me it was a total shock to wake up and feel like I’d been hit by a bus! A cannula in each hand and still hooked up to the monitor until they were happy the device was working. Going for a wee was fun I tell you!

The swelling over the device is sore and achy, but not painful after the initial first few days and the stitches healed really well. It’s so neat I’m confident it will hardly be noticeable. However, I’ve still had down days thinking this lump is so ugly and in the way. I’ve been holding my arm out like a chicken wing as resting it down naturally doesn’t feel comfy.



Home time

Once home with my little family it was just the best medicine I could have wished for! But hard to keep the kids at arms length. Ryan has been my rock, helping me shower getting dressed making sure my every need was met without even asking!

Lots of sitting, resting, sleeping and painkiller popping later and it all started to get a bit easier. I was soon back to doing it for myself, apart from washing my hair!! So one of the ‘don’ts’ is to not lift your arm above shoulder height for 4 weeks! And as a hairdresser that’s annoying!! But the perks of having your own salon at the bottom of the garden and one of your besties also being a hairdresser (who knows the need for clean hair and how much it can lift your mood) means that my hair looks good even if I do look like a ghost!

Oh and I forgot to mention that wearing a bra is too uncomfy! So all in all not the most flattering times…

I also wasn’t expecting to have a scar in the middle of my chest where the wires head up the breast bone either. It makes sense, I just hadn’t realised that it would be there. I’ve found this scar has felt more sore and bruised than the one under my arm, probably as the skin is so thin and the pressure of trying to lean forward has been most uncomfortable!

Another part I wasn’t expecting was the excessive bloating!! Having not had surgery before, I didn’t know about the air that they apparently pump in to do the procedure – equaling massive bloating and pain in my back where it gets trapped! Again none of these things are really massive issues, but for me I think if I’d have been prepared for waking up and feeling so bad, it maybe wouldn’t have been all so much of a shock.

I made short trips out at first. I’d get tired quickly as all the aching soon wears you out. But being the school holidays, and having 3 kids, life really does have to carry on…

 

Travelling to Oxford Hospital in Style

On the Wednesday, late afternoon it was arranged that I would be taken to the Oxford John Radcliffe Hospital by ambulance.  I felt such a fraud as I was strapped onto the trolley, not even allowed to walk!!

On the Wednesday, late afternoon it was arranged that I would be taken to the Oxford John Radcliffe Hospital by ambulance.  I felt such a fraud as I was strapped onto the trolley, not even allowed to walk!! What a princess, haha! I’d built up a serious stash of goodies, so at least we had snacks for the ride! The guys were lovely, friendly and very reassuring. It seemed silly, but inside I felt nervous and unsure of what would await me there, more OAP’s!? It was also another step closer to the inevitable and I wasn’t sure how I felt about that…

The paramedics joked that my room with a balcony and a view was this way… then we all did a double take and I had a huge sigh of relief as I really did have MY OWN ROOM!! Whoop Whoop! My own bathroom! Bliss…

Then I sat all alone… but then my Aunty arrived. She’d followed the ambulance pretty much from Gloucester and she bought glorious news of an M&S cafe at the entrance of the Oxford John Radcliffe!

I was further from home here but actually had more visitors than ever…

I’ve never felt more alone yet so loved, it’s been 8 years since I’ve been alone; I mean I usually don’t even have the chance to pee by myself! So to suddenly find myself alone… The times I’ve moaned and wished to just have a break and lie in bed all day… all suddenly seemed empty without my family. However, despite being in Oxford I was inundated with visitors. Family and friends that went (quite literally) the extra mile to visit and make sure I had everything I needed, especially while all my immediate family are away. You know it’s true friendship when you can request a clean knicker delivery!

Friday was the day! 

Day 9 in hospital and it was finally the day, a mixture of dread and excitement knowing I could finally go home the next day. But I tried not to think about it all that much.

Aunty Jenny arrived with fresh washing and a reassuring smile. We sat chatting when all of a sudden a porter came to collect me, my stomach flipped! I wasn’t ready yet. He was earlier than scheduled. He handed me a gown and some stockings. I fumbled my way into them… Aunty Jenny came in the lift with me getting out just before the theatre level. Leaving me all alone. I could feel my bottom lip start to wobble… it all felt so real all of a sudden. Aunty Jenny reassured me that she’d be there when I woke up.

I was wheeled down the corridor, which felt like the under ground hidden area of the hospital. The nurse was so lovely, I think my face must have said it all.  She told me how she cried going to have her wisdom teeth out and she works here! Maybe I wasn’t being silly, maybe everyone gets the wobbles!? The surgeon and the other theatre people (I’m sure there’s a much better way of describing them!) all came to meet me, all so friendly yet efficient.

Then everything went black…