My short bio: When I was 20 I had my first out-of-hospital Sudden Cardiac Arrest, which means my heart just suddenly went into an arrhythmia and stopped beating. I needed 45 minutes of CPR and was in a coma for a week. I was diagnosed with Hypertrophic Cardiomyopathy. In the last 8 years, I've had a further 8 sudden cardiac arrests -- resulting in my heart stopping / 'dying' 9 times in total.

My Proof: edit: sorry first AMA didn't know what proof I needed, here is my holding the paper today with my article.

Me holding the Daily Express

Daily Express Article Photo

Daily Express Article

MyHeart.org.uk Blog 1 (I have died again since I wrote this)

MyHeart.org.uk Blog 2

Comments: 155 • Responses: 60  • Date: 

purpgoblin37 karma

Firstly I would like you say you're a warrior. Please continue to showcase your resilience.

Question: how has your many deaths affected you in daily life? (Besides physically)

GenericBox36 karma

I definitely experienced some psychological side-effects. I once sought out a counsellor who said it is natural for me to have PTSD from the events. Mostly this manifests in a mild paranoia and the 24/7 "listening" to my Heart. Every little bump, flutter, twinge, anything, can set me in a panic mode that I am about to die again. On bad days, I sometimes feel like every step is a risk. I don't really have full blown panic attacks -- but it usually makes me just stop in the middle of the street/path/wherever. I often pretend to look at my phone to make it seem to others that I'm not crazy haha. So if you ever see a guy in London stop and look at a blank phone for no reason, might be me.

Demotri-26 karma

I don't mean to insult anyone here but I never really understood why people call kids with cancer or people like OP resilient and heroic. I'd understand if you choose to stop your heart 9 times (even though it would be a silly thing to do) but it surely requires courage. On the other hand you don't call someone who fell over by accident brave just because he broke his nose or something. I guess my point is OP doesn't have a choice but to live on or kill himself but suicide over an illness is absurd in most cases so it's just something he has to live with. I'm sure it sucks knowing that you could die at any moment but it's not heroic only unfortunate. At least that's the way I see it.

GenericBox5 karma

Yeah I definitely don't feel heroic in anyway. But the point of this/the article is that you might be surprised how few people with heart conditions like mine keep or can keep a positive outlook. I worked with the British Heart Foundation on this article to get message out there that even when your life is 'over', it isn't "over". You can still get out, move to another country, have amazing experiences. :)

HoboLegacy17 karma

Some people claim they met god, others say it was complete darkness.

Have you had any experiences or memories during those times you were dead?

GenericBox58 karma

I like to joke I've had them all. I think it was the 5th one that I remember my HR colleague writing my name on a whiteboard three times in what could be described as an Out Of Body Experience -- or another time I went to New York, and saw Taxis, Trains and Hot Dogs. The last time it was just yellow, warm and a generally "nice" feeling.

I definitely can understand why people think these are supernatural experiences but as an atheist I also know that the chemicals in your brain are in overdrive "oh shit" panic so you can't trust anything you see. I know it's mostly just dreaming before I wake up.

One of the most depressing thoughts I've ever had was after the 4th death when I woke up and thought to myself, "Thank [email protected]# I was dreaming, it means I'm still alive"

Kataclysm15 karma

Are you actually a cat in human skin?

GenericBox24 karma

No comment.

TJChilders11 karma

What was the first thing you did after coming back to life that you kept putting off before you died?

GenericBox35 karma

This is probably bad and I hope my cardiologist isn't reading but I went straight to McDonald's!! The night before my last 'death' I had a cheap pre-made salad from the super-market, water, and some cheap sushi. I told myself that if I'm ever going to have a "last meal" again, it isn't going to be some bad-tasting cheap salad.

puterTDI24 karma

it isn't going to be some bad-tasting cheap salad.

and you still chose McDonalds?

GenericBox26 karma

Haha hey I know some people rag on McDonald's but in the UK at least, it's not good for you but it sure is tasty lol. I am a cheap date.

lylet2 karma

it isn't going to be some bad-tasting cheap salad.

Geeze man... you know you can eat healthy without touching salad, right? Eat some grains, legumes, nuts, mushrooms, potatoes, and a variety of different fruits and veggies.

GenericBox5 karma

I really struggle to find that kind of stuff tasty. I'm a picky eater so usually steer clear of any pre-made salad stuff. I really only enjoy like 6 vegetables. Not a fan of grains/legumes and nuts are okay but not what I'd call "tasty". Can't eat mushrooms.

But ultimately point being when I got out of hospital was to get the biggest, dirtiest, sugar-laden "tastiest" thing I could, which happened to be McD's XD.... nothing healthy was going to compare/satisfy me like that lol.

[deleted]-4 karma

[deleted]

GenericBox3 karma

If only it was that simple! :)

MCJizzrag9 karma

How does it feel that i died less in Bloodborne than you have in real life?

GenericBox3 karma

I tried to come up with a witty response but realised I wasn't getting any work done.

GenericBox1 karma

I don't know how to answer this sorry lol XD I haven't played.

Enolator8 karma

Alright Jamie, thanks for coming in to talk to us, you're an absolute trooper.

If you remember, what would you say was the most painful parts throughout all the cardiac arrests, both physically speaking, and/or emotional? Cheeky p.s. Was there anything in particular that doctors did that made your overall experience significantly better?

GenericBox6 karma

Physically speaking it's the defibrillation. I forgot the exact science behind it but it is a very powerful (relatively I think) electrocution of my heart lol. It's a massive thud/kick in the chest, I lose my breath, it goes up the side of my neck and I taste "metal" in my mouth. But it only lasts a few seconds.

Emotionally its the "8 seconds of dying" -- 8 seconds or so that I know I'm in VT headed for VF and waiting for my defibrillator to charge up. It's a completely hopeless / dread feeling as I know there is nothing I can do to stop it.

I take like 6 medications a day now so I think they think that is helping (even though I still have cardiac arrests over the years). I had a Doctor walk in on me once in ER and saw me smiling/joking with a colleague after I died in the office and he said "You didn't have a cardiac arrest, if you did, you wouldn't be smiling". After running tests he came back later and said: "Turns out you did have a cardiac arrest". I was like "told you so XD"... Also, my latest advice from the Doc is to NOT exercise ---- probably the best advice I've ever heard a doctor give :D

MrLebanon7 karma

Are there any differences between each experience that you can remember after you “died”? Or is it essentially like your memory has been scrubbed 9 times, and if it is like that, how has that effected your personal life?

GenericBox28 karma

Each one is kind of unique. Sometimes I only pass out for a few seconds (I have an ICD implanted which acts like the defibrillators Paramedics use -- that will automatically shock me back instantly) -- so have been able to "feel" the shock and its effects. Others I just drop/black out completely.

By the 5th, a nurse told me: "You know the ICD isn't going to work everytime right?" -- so that time I remember thinking about my Mum and family before I blacked out. I get an 8 second "warning" where I know my heart is fucked but it takes 8 seconds for the defibrillator to charge. So those 8 seconds usually involve me knowing I'm about to die.

My memory was only scrubbed after my first one because I went so long without CPR/oxygen so it was a side effect of minor brain damage.

5terlingKee6 karma

After being so close to dying so many times, what words of wisdom would you give to someone who is still studying/worried about University?

GenericBox15 karma

I was just finishing my degree when I had my first cardiac arrest -- and it was right when all my assignments were due. Luckily my University gave me an "unlimited" extension. I like to think that it gave me a better appreciation of the smaller things. In my work life, I've found myself less interested in "promotions" and chasing some rank within the company. As long as you have enough to enjoy life how you want to, don't spend the only time you have to enjoy it working/stressing. Travel, create memories, learn, experience, see, do what makes you happy. You only have one life. Generally don't worry so much :)

cantproveimnotarobot5 karma

Can you provide actual proof that this is you?

Edit: He is who he says he is

GenericBox4 karma

What do I need? This is my first AMA -- how about a Selfie with the paper?

a-different-person3 karma

You should edit your post to add this as further proof so people like me stop asking.

Sorry I'm just kind of a skeptic.

GenericBox3 karma

No worries sorry wasn't sure what would constitute proof when I created :)

SuperMoquette4 karma

"What doesn't kill you make you stronger"

Are you Chuck Norris or a toddler at this point ?

GenericBox6 karma

One of my favourite movies was Napoleon Dynamite and I used to joke after I woke up that "I round-house kicked a heart attack in the face."

My family made me a t-shirt with Chuck Norris and that quote for my 21st birthday XD

rukioish3 karma

I saw you post about a transplant, but have you considered or been considered for a fake heart? No idea how they work, but it would be kinda cool!

GenericBox3 karma

I'm not sure, I think the patients best suited for a fake one are those who are on the list but won't last long enough to see a real heart while they wait. It would be cool though, and would be totally up for it if it was more reliable/as reliable as a transplant. But I think the system at the moment called LVADs is like a battery powered heart -- but would freak me out because you have to carry the battery around with you. Can you imagine have to worry if your heart has enough battery :S

rukioish2 karma

Oh yeah I totally hear ya. I figured you'd know more about it than I would.

What's your favorite food? :)

GenericBox3 karma

Haha hmm tough one. Steak and Chips probably. or Spaghetti Bolognaise.

CleverZerg3 karma

Dying, yay or nay?

GenericBox6 karma

I mean on a really sadistic/cynical side, it's a yay if you survive it. I mean it is a pretty intense experience to wake up to someone performing CPR compressions on your chest, a nurse pumping an Oxygen bag over your mouth, 12 doctors standing around you and the Code Blue lights flashing in the background. Or it was kind of cool to get a Paramedic Motorbike escort through London.

But otherwise, nay, dying sucks. I want to live long enough to see hoverboards, flying cars and life on Mars.

turricalyapness2 karma

Do you experience any type of grogginess as you would coming out of surgery or is the experience of someone performing CPR compressions on you very vivid?

GenericBox6 karma

I feel so pumped after waking up -- like I've literally just had a really deep, long sleep. After I woke up on the floor on my 2nd one, I had this real surreal moment of like, "did yesterday really happen? or did I dream it?" because my mind/body felt like I had a good 8 hour sleep, when in reality it was just 30 seconds or so. After my last one, honestly woke up to the CPR vividly awake and felt like I could get up and run a marathon.

I think because when your heart starts to fail your body's emergency system dumps all the chemicals into your body that it can to fix it -- like Adrenaline to make the heart beat faster/at all. So you feel high/happy and amped up lol. Well I do.

SputtleTuts3 karma

Have you ever seen the movie Flatliners? What do you think of it?

GenericBox2 karma

Haha yeah, I mean I get the 80s version -- the technology was relatively new (I think the first ever ICD was implanted in 1980) -- so I can understand the awe of defibrillation and how rare it was for people to survive/come back from such experiences. I mean I'm not religious/am atheist so I don't believe in any of the supernatural stuff but it was just a movie that played with something we didn't know.

The new one though had no excuses...

warmshower3 karma

What kind of limitations on normal activity do you have? How does your day to day life differ from if you weren't just up and dying all the time?

GenericBox6 karma

It's a weird one to tell what "limitations" are there. Like, I feel like I need to stop every 500 meters or so, and definitely after any amount of stairs (going up) -- BUT, I'm not sure if this is a medical limitation or just my anxiety/paranoia about triggering another episode. But day-to-day there is no real difference. I still walk to the bus/station etc with no problems and head out for lunch/dinner/whatever. I've driven across the US four times now, and around the UK twice.

The only thing that really differs is that I can't exercise (Doctors ordered not too!). I can't jog. I can't run. I can't ride a bike quickly. I could try, but last time I tried I died, so probably not. But I can still do stuff where I'm not fighting gravity lol -- like snowboarding in the French Alps or zip-lining down Vegas Fremont Street.

I try and do things even if they say "don't do this if you have a heart condition" generally because I know chances are it won't affect me. I mean sure, I might die, but there are two outcomes: I either wake up before the zip-line gets to the end, and just walk it off -- or I don't wake up :)

warmshower3 karma

Wow I'm surprised they let you snowboard and zipline - those get the heart going for me (especially snowboarding). Can you exercise by way of longer walks? Just curious because I know I get pretty unhappy if I'm not able to exercise, so I can imagine it would be tough.

Thanks for the answer! There's definitely some humor in, "last time I tried, I died, so..."

GenericBox3 karma

Yeah it's weird I think the no exercise advice is more of a just-in-case, I can feel my body / heart and stop when I feel like I'm reaching that point and the good thing with snowboarding/going with gravity is that I can always just fall over to give myself a break.

There was definitely a moment though on the zipline where I needed to calm myself down before the doors dropped lol.

And yeah, officially the advice is don't exercise but I am supposed to try and do light cardio to keep the weight down.

feliperama3 karma

Two questions:

1 - Can you be by yourself? 2 - How did it feel to "die"? Did you see anything?

GenericBox5 karma

  1. Yeah I like to think I am a very positive person and do well "alone" but there are times you get caught in a loop thinking too much about it and "listening" too much to my heart. As an Australian my upbringing was very much to suck it up, be a man and bottle any emotions I have up. Sometimes alone though I break and have a little sob about something.
  2. It's scary af. When I know it is coming it is the most absolute dread I could imagine -- almost vomit/be sick kind of fear (or maybe that's just a medical response to the situation lol). Otherwise, it feels like a dream. The last time I 'died' I was on a treadmill and I remember seeing the Physio slam the Emergency Stop button, shout out "I NEED HELP IN HERE" and then I had a nice dream/warm fuzzy feeling until I woke up and he was doing CPR compressions on my chest.

Portarossa3 karma

  • Are you scared of dying? (I mean the kind of dying you don't come back from, not this Psych!, down-low-too-slow thing you've got going on with Death at the moment :p)

  • How do you feel when it happens to you? Is there a sort of 'Oh, not again' resignation? Do you have faith that you'll be OK, or is it a fingers-crossed-and-hope-for-the-best kind of deal?

Glad to hear you're still pushing through it, and best wishes for your future health.

GenericBox14 karma

  1. Absolutely -- probably my biggest fear, which leads to some of the triggers and stuff I have about stopping. I'll stop in the middle of a street if I think my heart is playing up. I haven't been hit by a car yet, so technically my heart is more deadly. A nurse once told me that my ICD (implanted defibrillator) won't work everytime, which was great to hear, but makes me think more and more about when the one comes I "don't" wake up from.

  2. I get about 8 seconds of warning, I like to call it the "8 seconds of dying". Usually I can feel my heart go into VT (an abnormal rhythm) -- and at that point I know I'm about to die again. In the beginning, I used to think that if I just sit down/calm down it will go away and go back to normal -- but the doctors told me that isn't possible. Once it has started, the only way out is to get defibrillated. VT is technically less serious nor a real 'cardiac arrest' -- but unfortunately my condition means all of my VTs so far, have led to VF -- which is when the heart stops beating.

After the nurse told me that it won't work everytime, I often think of my Mum/family when I know its coming again. Mostly is intense dread/fear/sadness. Mostly just a fingers-crossed-and-hope-I-wake-up.

whoisfourthwall3 karma

Have you gained any magical powers yet?

GenericBox7 karma

I have an ICD implanted, meaning "I Can't Die". But seriously I've often wondered like if I was in a car crash would my ICD shock me back to life/keep me alive. Hopefully don't have to try it. So apart from the usual Zombie superpowers I have also become a Vampire, but means I can't go outside in the sun....

Vampire medication

whoisfourthwall2 karma

cool, anyways on a more serious note, do you have lasting pain from your experiences? Like does your organs, body parts in general have this constant pain or other health issue?

GenericBox5 karma

When I had my 4th cardiac arrest I woke up at the bottom of a stairwell -- and never really got that checked out -- so I definitely think there was some damage somewhere in that episode lol. Mostly thats just super painful sneezes (feels like I break my ribs every sneeze), and pins and needles that aren't innocent tingles but really painful pricks.

The medication I'm on is "poisoning" my liver I think, which means I'll need to go on a new medication to reduce the damage it is causing -- or get a liver transplant down the line. And as my heart generally fails it affects my Thyroid which produces too much of something I forget. My heart is starting to get so weak / bad at pumping that it struggles to pump the blood back up my legs from my feet. So fluid builds up in my feet and makes them swollen. I'm also on medication to reduce that.

Seems like most things rely alot on the heart lol so I think generally it causes damage to my other parts. But I don't "feel" those.

joe_not_the_dog2 karma

Would you now say you have no worry or fear of death when it actually happens for good?

GenericBox2 karma

Nah probably the opposite. The feeling of dying is the worst experience I've ever felt -- that dread, breathlessness, and total loss of energy feeling as my heart stops beating. Even my brain slows down if I go hypoxic and I couldn't figure out even simple things like pushing a doorbell button. Bloody hate it. I like to think I'm a futurist which makes it harder. My job title is literally "Creative Technologist", so I fear/worry about all the amazing tech and stories that I won't live long enough to see. Sorry, got a little down answering this one lol. Death sucks.

bigshaned2 karma

How do you go about your daily life? Are you the type of person living everyday as though it's your last?

GenericBox3 karma

Kind of, my coping mechanism in general to the whole situation is to "forget about it". Sometimes literally. I have missed too many appointments at Doctors because I get the letter about some serious Cardiology meeting and just bottle it up in the back of my mind and forget about it.

It's a really weird condition in that 99.99% I present as 'healthy' so it is easy to Keep Calm and Carry On. I have definitely learnt to value "experiences" more than anything. I spent all my savings on holidays, travelled Europe and the US, and spend all my extra cash on the next holiday. Experiences are definitely more valuable than "things".

a-different-person2 karma

So can you tell me which religion got it right?

GenericBox3 karma

Whatever religion that says that Heaven (or Hell) is in New York City XD

AWKWORDZ2 karma

Are you on a list for a transplant? What's causing you to go into SCA?

GenericBox4 karma

Not yet, there is only 1 heart available for every 10 people that need one in the UK. So they only put people on the list that are in a goldilocks zone --- sick enough to need one but well enough to survive the operation. I'm not "sick" enough at the moment. My cardiac arrests are inconveniences now, but my heart condition is deteriorating and I will need to go on soon. My Cardiologist said within the next 2 years my heart will probably fail. So I go for assessment every 6 months at the moment.

AWKWORDZ3 karma

Wow, I would think dying 9 times, especially being pretty young, would qualify as being "sick" enough. I wish you the best my man!

GenericBox3 karma

Yeah it definitely has warranted me in seeing the Transplant team, bu t at the moment they trust that my ICD Defibrillator can keep me alive for the time being. There will be a point where my heart can't run efficiently enough in general -- both from my HCM (Hypertrophic Cardiomyopathy) and also because every time I have a cardiac arrest it actually scars the heart muscle and makes the situation worse. I think there is some indicator in your blood that shows how well you're heart is doing -- BNP or something like that -- and mine is steadily increasing (meaning my heart is failing). So thats what I think my Cardiologist is using as an indicator that my heart won't last another 2 years.

LordMugs2 karma

Is there life after death? I mean it's kind of the obvious question

GenericBox5 karma

I personally don't believe so :) There seems to be a lot of dreaming and "drugged" out feelings from my experience. And you wake up pumped, like you could run a marathon, because your brain releases all your built up Adrenaline to try keep the heart working.

Spitefire62 karma

Do you "know" that you died, did you experience anything while you were out, or did you just wake up after you were given cpr?

GenericBox1 karma

I guess I don't know during, if I am "thinking" at all it has been in the form of a dream -- and for all I know these only occur in the final seconds before waking up anyway. But I definitely know it is coming. I've spoken below about the "8 seconds dying" -- it's a really distinct feeling that I've gone into VT/VF and will drop dead in a few seconds. While on the treadmill I felt the twinge that told me the 8 seconds had started, so I turned to the physio with me and said, "I just felt a feeling, I'd like to stop" -- he was like, "keep going" -- and then 3 seconds later I was gone. While passed out I remember dreaming of the warm/yellow glow but also then thinking, "why am I dreaming, aren't I supposed to be on a treadmill?" and then woke up to the CPR.

Spitefire61 karma

interesting! thank you for answering, I had not seen your 8 seconds of dying, ill have to look a little further down

GenericBox2 karma

No worries, basically I've been told that my ICD takes about 8 seconds to generate it's charge once it detects that I have gone into VF. So for 8 seconds or so (which seems to be legit in my experience -- not that I could really count though) I am in polymorphic VT / VF and can feel it.

I lose all energy, my stomach drops, I stop breathing, I want to throw up, I go hypoxic and can't think straight and by the time I've processed that, I'm out, BANG, back up again.

But the absolute dread I feel is the worst. Literally the fear of knowing that in 8 seconds or so I will die, and my ICD has to work to bring me back, or else.

hillakilla_2 karma

Sorry for the serious debby downer question - I just have a morbid curiosity.. because of your condition, are you going to have a shorter life span? Even if they bring you back every single time. I think most men average between 75-83, can you live that long with this condition?

GenericBox4 karma

Hey no worries. Yeah probably -- depending on any future developments in replacement hearts. You can obviously get a second heart transplant but with so few it may never come as a chance. It was kind of funny in a troubling way actually that my Transplant hospital I go to has a plaque on the wall of their waiting room. "Guinness World Record longest surviving heart transplant patient..... 28 years". I'm like, I'm sure that is comforting for everyone else in this room who are all over 60, but I'd kinda like to live past 57 :(

KnightPlutonian2 karma

How do I game the Pearly Gates judgement system and/or how much did you annoy the dude up there to get sent back so many times?

GenericBox1 karma

It might be an unknown atheist advantage in that we can't go to heaven or hell so whoever may be in charge is just like fuck it, stay on Earth then... XD ... I mean Kevin James came back.....

TickleMyNeutrino2 karma

Wow, 9 times back from death is extraordinary. I thought only cats could do that! lol

Btw, Did you ever experience the whole nine-yards out-of-body-experience/NDE thing?

GenericBox2 karma

I don't believe they really exist but had a few dreams that come close. One time I was walking to my desk with a colleague and when we got there she wrote my name on a whiteboard. Kind of like what I hear people describe OOB experiences. Except I woke up being cradled to the floor -- and there was no writing on the board. Last time I dreamed of a warm, fuzzy, "yellow" feeling before waking up to a doc doing CPR. But I know these are just dreams and hallucinations of my brain in panic mode and a cocktail of chemicals that my body has released to stay alive.

It's what annoys me most about hearing superstitious/religious people describe these experiences. Like, I know first hand that they experienced something, but the arrogance to proclaim that because they dreamed it, that makes it real. Really makes me mad.

Fr2O-FrOH2 karma

What a resilient, hard-headed, chuck norris, lucifer-like, sly little devil. You will just not die! Keep fighting you legend. I wish one day you will not have to worry anymore because you are back to normal health. The question I have is as following: Do you know other people with this condition? Have you guys ever tried playing cardiac roulette to see who can get into a cardiac arrest the quickest and comeback? ;)

GenericBox1 karma

Haha yeah and thanks. There are a few groups around for support / reaching out. I'm going to put on my marketing/ambassadorial hat here and recommend if anyone with a similar condition is in the UK and wants to reach out, get in touch with the British Heart Foundation, Sudden Cardiac Arrest UK or CRY - Cardiac Risk in the Young.

But more lightheartedly, there is actually a Guinness World Record attempt next month in London to have the most amount of cardiac arrest survivors in one place. So we might have to try some cardiac roulette there and settle it

i__like__nuggets2 karma

Do you remember what happened while you were temporarily dead?

GenericBox2 karma

Most times I remember the dreams I have. It's weird that I actually remember them more vividly than I do the moments before/after the events. On the 4th I remember getting flashes of New York City -- like car horns, subway noises etc -- almost like a segway from a sitcom. On the 6th time I remember my colleague wrote my name on a whiteboard -- but I don't remember what we were talking about before that. The last time I remember thinking, "why am I dreaming? Shouldn't I be on a treadmill?" and a warm/fuzzy feeling.

Triggerman842 karma

How do brains taste?

GenericBox1 karma

Thecyberphantom2 karma

If I stay you in the heart with a wooden stake will you finally die for real?

GenericBox1 karma

Just remember to double tap.

Hanke172 karma

What did they diagnose you with? I'm a 22 year old who has also died from cardiac arrest and have the icd implant only having it go off once so far but it has only been 7 months since the actual death

GenericBox1 karma

Fellow zombie, good to hear from you! In hospital they diagnosed me with inherited Hypertrophic Cardiomyopathy (HCM).

GenericBox1 karma

How about you? How are you feeling about it all?

Hanke172 karma

I'm feeling fine, I'm currently undiagnosed which is pretty frustrating! It has been a wild few months that's for sure, pretty surreal moment waking up out of the coma and having no memory of what happened!

GenericBox1 karma

Yeah definitely. You'll probably have to get used to that. I have HCM but they still don't know "why" that is causing me to go into VF so often. So Ive been apart of research studies and poked and prodded enough times for it to become a routine thing. They even tried to "kill" me a few times. It's a test where they try to send you into cardiac arrest so that they can try determine what exactly that trigger is. They didn't work, so they still don't know. The next thing they want to try is called a Stellate Ganglionectomy, which I even had trouble on Google finding. Apparently only a few dozen people have had it and then it was only a study lol. Apparently it's like a thing in your spine that maybe regulates the system that keeps your heart beating automatically. The surgery removes it lol. Theory is mine might be playing up and causing my heart to stay in ahhrythmia. Don't know about the idea of removing something that help keep my heart beating automatically lol. Would hate to think I'd have to start "telling" my heart to beat lol.

Have you found many people to talk to about it or felt the need to reach out?

Hanke172 karma

Honestly I have a team of 8 doctors that are on my case so I have had lots of people looking into what it is. I have had the doctors try to see what the trigger is and try to make my heart go into state. I just think you really hit the nail on the head with the laying attention to every heart beat! I don't feel a need to reach out I'm pretty okay with it and what happened you can't let something that you can't control bring you down!

GenericBox1 karma

Yeah exactly, I didn't even know there were support groups until I came to London lol which was 4 years after it all started so was pretty comfortable with it by then anyway. But it's cool to be able to chat to people who know what you are going through and just gripe/vent any frustrations that no-one else would get.

mystigal2 karma

Do you believe in guardian angels?

GenericBox6 karma

No not personally, I'm atheist. Alot of people have told me over the years that I must have a guardian angel looking over me or God must have a plan for me but I really take issue to that. Like first, if giving a baby a genetic heart disease that will one day potentially kill him 9 separate times is a part of some plan, what sort of sadistic bastard plans that out? Then secondly, gaurdian angels, that completely does a disservice to the Paramedics who did 45 minutes of CPR on me, or the skill of the doctors to get me on ice asap so I didn't have brain damage, or anyone else who has helped me these last 8 times. Sorry, rant over lol :) I feel passionately against this since being in this situation

HFXmer2 karma

are you scared of dying?

GenericBox2 karma

Yeah absolutely, it's my biggest fear. I think it's the only thing that messed me up psychologically. I have nightmares about like the grim reaper chasing me, or a demon train that shoots electric bolts at people on the platform, but you can't run because there is an invisible shadow monster that shoots swords out of it. Some messed up nightmares at my age. It's also why I feel the need to "stop" everytime I feel even a twinge when I should be continuing on to do at least some light cardio...

Point being, yes, and that's what messed me up the most.

HFXmer2 karma

thanks so much for sharing your story, enjoy the gold!

GenericBox2 karma

Thanks!

Piracanto2 karma

I'm sad that you're going through that, but happy that you're still here.

Question: Since the doctor recommended you don't exercise.... Can you have sex?

GenericBox3 karma

Apparently, I haven't had any issues and always joke that if I do it might be the "spark" to start a relationship lol. But yeah I think with exercise its... sustained strain over a longer period of time.

NicNoletree2 karma

How does it feel to be a cat? This cat's got nine lives!

GenericBox3 karma

I have to admit I was really kind of freaking about the whole 9 lives thing before my last 'death'. I had 8 previously, and was on my ninth life. So was thinking to myself "I really hope the next one *isn't my last one". Luckily I had a good Physio who performed CPR :) He did his job and I get to continue my 10th life...

jayryan292 karma

are you religious? How has this affected you in a religious way?

GenericBox1 karma

No I have always been atheist. It has almost strengthened my atheist-ness in a way. Like if God is all powerful and humans are a representation of him and blah blah why the hell do genetic diseases exist? What logical or otherwise reasoning could there be for something like Hypertrophic Cardiomyopathy.

Plus now I have first-hand experiences of NDE stories you see everywhere and know they are all bullcrap.

So yeah this usually manifests at getting a little shitty sometimes when people try to tell me it's God's plan or I have a guardian angel -- and sometimes rant about how people who claim NDE are real.

Maybe it would be easier if I was religious in that I could find some comfort or something in death but I'd rather be right and truthful to myself than "comfortable".

bulgingforearm2 karma

Do you feel anything when you're in a coma? Or do you remember being in it?

GenericBox4 karma

Not really. I lost alot of memory from it. The doctors told my Mum that when I woke up I probably wouldn't be the same and have suffered severe brain damage from the lack of Oxygen. Luckily there were no serious side effects but definitely can't remember anything about a month before the event, and didn't start forming new memories til about 3 weeks later.

yaboymelv2 karma

So if you were "dead" for 45 mins, wouldn't that result in some brain damage due to lack of oxygen? If yes, how has it affected you?

GenericBox1 karma

I got the odds broken down to me once, I don't know how accurate they were but they seem to align with other sources: only 10% of people who suffer an out-of-home cardiac arrest survive, of those that do, only %4 of those survive if they need to be medically induced into a coma, and then, if they do, only 1% wake up without brain damage.

So I think I'm a 1 percent-er.

They definitely told my mum, friends and family that when I woke up to not expect me to be the same. They said I would have severe brain damage. When I woke up, I don't think I helped the situation -- I failed my first psych exam because when she asked "Who is the Prime Minister of Australia" I replied "George Bush" (I'm Australian -- so should've known this lol).

But after the drugs wore off I can't believe how lucky I was. The most I suffered was losing my memory of a month or so before it -- and couldn't really hold any memories for about 3 weeks after it. I sometimes feel like my short-term memory is maybe at 90% what it used to be, but insignificant enough to not tell the difference. I've often wondered --- how do you know if you have brain damage?

GenericBox1 karma

I think it was a combination of PERFECTLY performed CPR, and the Emergency doctors who knew to put me in an Ice bath (to keep the brain cool) as soon as I got to hospital. They did an amazing job.

Deerman222 karma

Thank you for being here! Words can't express the remarkable courageous journey that you have been through!

Question: Do you have any memory of where you went when you died? Secondly, when you awoke from your coma, what were your first initial thoughts when you found out a week had gone by?

GenericBox1 karma

The only place I remember going when I died was the 4th time -- I "went" to New York City lol. But naw it's a lot of dreaming. Not a believer in that sort of stuff.

Unfortunately I don't remember when I actually woke up from my coma. I think some minor brain damage didn't start forming memories for a while. I think I remember trying to pull out my catheter, and I vaguely remember pulling out an IV from my groin and blood going everywhere. When I actually started communicating/talking to friends apparently I was like a record on loop. My mum has said my friend was asking how I was and I would respond: "Good, good... So how are you?" --- he'd reply -- "Good, good... So how are you?" -- over and over lol. So I think alot of drugs made the experience hard to comprehend. By the time I was coherent enough to process that I was in a coma for a week I don't think I was that phased -- I was more concerned about dying / 45 minutes of CPR, having heart disease and needing surgery :D

Because I lost about 4 weeks memory before the event I was more concerned that I "missed" the Rugby League grand final that year. But my friends were like, nah - we had a party at your house.

jjdontplay2 karma

Do you know The OA?

GenericBox1 karma

Not sure what that is sorry

ScaryHours7urell1 karma

So wassup with that? You didn't eat healthy as a kid or something? Just a spontaneous regard from life on your soul?

GenericBox1 karma

Nah it is a genetic/inherited condition unfortunately. It's in my DNA and I will have a 50% chance of giving it to my kids some day. Which makes me think I'll be visiting the IVF doctor should the time come or get the kid CRISPR'd. The whole idea of undiagnosed (or idiopathic) heart conditions causing sudden cardiac death actually happens most frequently in young people. If you are in the UK I think a famous footballer actually died/had an SCA while on the football pitch. It's also what happened to Carrie Fisher I believe as well as an 8 year old girl the same day on a flight to Ireland. Just bad luck/genes. Was a pretty healthy kid, played all kinds of sport -- Soccer, Cricket, Rugby -- even applied/got accepted to the Military.

edit: not that Carrie Fisher was young lol XD

utopiah1 karma

Despite all that happened to you (and I'm sorry to hear it did happen) how does it feel to be EXACTLY like the rest of us in the face of death?

PS: according the legal definition in place since earlier than your birth you have died 0 times, like all of us.

GenericBox2 karma

Hmm, not sure what you're asking :) I'm definitely still as shit scared as anyone else, it's not like I've come away from these less and less concerned. It kind of becomes "normal" to a sense that I know sometime this year I'm going to be in the position where I have 8 seconds to live and only my ICD will be there to save me. So it never gets less intense. And true, legally/medically I haven't "died", that's why I have or tried to make sure I always put that in quotes lol. A cardiac arrest is defined as a cessation of the hearts functioning, which is classified as 'clinical death'. My condition causes my heart to go into VF, and there is no natural way to come back from that. You die, or you get defibrillated. But yeah I think the whole point of my work with the BHF and here is that I am trying to show that people with this condition can still be like the rest of us and still live a normal life. That's a message I hope is getting across. I'm not special because this issue happening but hopefully others see that it's not what has to define you.