IAmA 21 year old living with Brugada syndome (AKA Sudden Unexplained Death Syndrome) AMA

Here is the full story in depth EDIT:(For those who don't know what an arrhythmia is, it is a strand of heart beats that can last any amount of time, that are irregular to the heart's normal beat rhythm) In most cases they are not lethal and very short. This is not the case for someone like myself who has Type 1 Brugada Syndrome... There is no cure. It is diagnosed with a simple EKG, but often lies dormant and goes undetected. But with a little 'luck' it will show up on an EKG. The only treatment is the immediate placement of a Cardiac Defibrilator.

WIKI: http://en.wikipedia.org/wiki/Brugada_syndrome I want to start by saying that with this story I do not mean to frighten anyone or create a sob and a pat on the back for myself. But I do hope that maybe I can shed some light on a condition that we never hear about. One that is growing in America and we should acknowledge and research.

HERE GOES: On September 17th 2011, I scheduled a routine check up at my family practice, with my regular physician. This is a routine check up that must occur every 3 months in order for me to be prescribed the Adderall that I, and I'm sure many of you fellow college students take. I mentioned to my doctor that every once in a while I feel faint when I take my pill in the morning. Which for him is an automatic red flag... Although, I later found that this had nothing to do with my condition, and was the result of me not eating before I took the drug, this decision to tell my doctor saved my life. He quickly noted that he was going to take me off of Adderall until I saw a Cardiologist at Swedish Medical Center. I was irritated by this immediately, because for me this meant more time at work missed, and more school work pushed back.

He ran his own EKG (Electrocardiogram) on my heart and found nothing wrong, but insisted that I go see the Cardiologist. I reluctantly wean't to the appointment 2 weeks later, at which point a nurse screened me through a series of tests that did not include an EKG. This was due to the fact that she had the EKG results from my prior visit to my normal doctor.

On her way out to grab the cardiologist she decided that because I said that my grandfather had a brother that died at birth from a heart malfunction, that she would run another EKG "Just because." She ran the test, and walked out of the room after looking at my results and saying "Huh, thats weird." To go fetch the Doctor.

I WAITED 45 MINUTES... The doctor came in and said words that I will never forget. "Mark, I believe you have a condition that I am going to take very seriously. It is called Brugada Syndrome. I know you have never heard of it before, but get used to that name because you will never forget it from this day forward." He was right. This scared me. I stood up and asked for a drink of water. The doctor opened the door, and immediately I had 8-10 nurses staring darts at me as I looked out of the room, white as a sheet. He asked one of them to grab a cup of water, to which 5 of them jumped out of their seats to say "Oh, I will." They were aware of my diagnosis before I was. The doctor told me that I would need immediate surgery to implant a ICD (Implantable Cardiac Defibrillator) into my chest to "Shock you back to life, when you go into Cardiac Arrest." To be told at 20 years old that you can/will die suddenly without warning, at any moment, is a lot to handle to say the least.

After two weeks of wearing a device that tracks my heart rate at all times, 24 hours a day, by a few people who is payed to watch it constantly in shifts across the country in Virginia somewhere. I had heart surgery to implant my defibrillator. What I was happily not aware of, was that this procedure required me to be awake and that they would have to stop my heart twice and allow the defibrillator to revive me in order to test the machine. The doctors told me that the severity of the condition was going to be based upon how easily they could stop my heart. This was after they had confirmed that I had type 1 Brugada (The most severe). When I came back to reality after the drugs wore off from surgery my doctor told me, that my first episode was likely to occur "within the next two years."

To this day, I am shocked at the sequence of events leading to my diagnosis. But what is most shocking, is that no one knows about this condition. I will live each day knowing that at any moment I can die. I also live each day knowing that because of Science and because of God/luck or whatever you want to call it, I have a device in my chest that will bring me back to life. This condition is REAL and it reeps in my thoughts everyday. It is time that we brought awareness to this condition.

I appreciate you for taking the time to hear my story and I hope for others to speak up as well. My name is Mark and I live WA. This was my second post to reddit.

Mark, you were one of those statistics. Just a random dude that suddenly dies on the street. Just chalked up to a mystery of medicine on why you died.

Instead of that happening, some sort of magical feat happened that change the very fabric of time and allowed you to know the beast that stalks you. You not only know it's name, but when it will come. You have been given weapons to fight, and the will to keep going. You're a fucking hero Mark.

EDIT: Wow so many people freaking out over me calling Mark a hero. So I'm going to have to explain why he's a hero. A hero is someone that stands up to the thing that calls his name at night, that wants his head on a pike. A hero knows his death is standing on his road, and he keeps fucking walking forward. There are many kinds of heroes out there, and Mark is now one of them. He knows what is coming, and he is sharing his knowledge of death and what will try to claim him with you. So raise a fucking glass for this man, and stay on your road, you're on it for a reason.

Wow. I very much appreciate that man. That means a lot. Thank you sincerely.

Right on man. You keep on living, all this time is a gift you were given. Go have an amazing time with each moment.

Heartless000 that wasn't heartless at all

Heartless is my boy. Thanks bro

My dad has a defib, he had partial heart failure and in a matter of a year, has been shocked 5 times. So I kinda know where you're coming from

Before you get shocked, you will feel light headed, a little dizzy, and then all the sudden a mule kick to the chest and a bright white light will flash, you will probably fall down. The best thing to do after is to not panic. Get water, and call your cardiologist after you've caught your breath and have calmed down.

The thing hurts but its an OK trade off because you're alive.

The thing sucks because you can't go into places like the Mac store without feeling something. Anything that produces its own magnetic Field is a potential hazard (I'm assuming you already know that).

Also how are you doing getting around, my dad has kind of a hard time climbing the simplest Hill. Do you have the same problem?

GREAT post. I love the feedback, because I have never gotten it before. Thank you I did not know that stuff about what you feel like. The other stuff I did know. My situation is much much different then your dad's however. I do not have trouble with exercise. But yes I can not walk through Airport security with out pat down, and I set off a few Fred Meyer alarms. But thats about it

I know those airport feels (no pun intended).

Best of luck to you.

HAHA thanks!

Do you live in Washington?

ya

I have a similar doctors' visit story to you! I was born with an Atrial Septal Defect(ASD) aka a hole in my heart. My father wanted it fixed through a non surgical procedure, which the doctors were uncomfortable with performing.
By the time I was an adult, I had no insurance, and no interest in dealing with it, since I had lived just fine up until them anyway.
About one month before my 22nd birthday, I felt an intense pain in my chest and my left arm was completely asleep. I ended up going to the emergency room, thinking it was a heart attack.
I arrived at the hospital, explained, and was immediately put in a wheel chair, which freaked me out even more. I was told that it wasn't a heart attack, but that I needed to see a cardiologist immediately as soon as possible. Still uninsured, it took me a week or so to scrounge up any resources to be able to go. I went in, and was seen by a very insensitive young doctor, whom said to me "You're the youngest patient I have ever seen! I'm sure everything is fine." As I sat there looking horrified as to what I knew was about to happen. He checked my heart beat, and stepped out of the room, and came back in with several other doctors and some equipment to hook up to my finger and walk me around the room. By the end of the appointment, I was told that from there on out, further testing would be needed, and for now we would take things one step at a time.
It turns out the doctors were feeling quite certain that I had developed Pulmonary Hypertension(PAH), which is like a high blood pressure of the lungs. I later learned that even 5 years before my diagnosis, that would have been a death sentence, and even at that time, the only possible solution would have been a full heart and lung transplant.
I ended up very lucky that all I actually had was an enlarged heart, and the most severe ASD they had ever seen. I literally had no wall in my heart at all. My body was imitating almost every symptom of PAH, in particular was my incredibly irregular heart beat, which sounded something like a large bang followed by some trickling sound, in a repeating pattern.

Luckily because the heart is just a muscle anyway, they were able to repair it by simply cutting off part of the enlarged portion, and sewing that on to the missing wall.
5 years later, I'm one fully functioning lucky survivor.

That's my story. I'm glad we both made it through!

DUDE YOU ARE BAD ASS. THATS CRAZY. Keep battling brother. I know I will.

This sister will keep battling hardcore^{^}

HAHAHA well thank you either way :)

I will live each day knowing that at any moment I can die.

Applies to everyone. You just don't know when that piano is falling.

Also, Good Luck.

My doctors told me "Within two years, you will go into cardiac arrest." YOu are right to some extent, but my odds are a lot more likely and definite then the person with a fully functional heart. Either way I appreciate it.

Sorry to hear about your condition mark, best of luck to you. I know that there are a lot of atheists here on reddit, and I know that this is a very personal question, but did you get any more religious after your diagnosis? I feel like for the elderly or terminal many of them turn to religion for answers. Was it the same for you?

If I am going to be honest with you, Yes. When you have that kind of series of sequences that lead to a life saving diagnosis, its hard not to ask yourself those religious questions.

Do you have any restrictions? Like what if you are driving and you die? I know that with your ICD you will be shocked back to life, but a car with no one controlling it can do a lot of damage in 12 seconds.

Your damn right I can, thats a risk I take every day. As shitty as it is to say.

This is one of the things I distinctly remember reading about in cardiopathology in medical school, and I am very glad that it was caught before you had a cardiac event. Along with undiagnosed congenital cardiac abnormalities, this is one of the big reasons behind trying to get AEDs installed in as many schools as possible.

Now for a question: We were primarily taught that this was most common in Asian populations. You look Caucasian in the picture, do you happen to have any Asian ancestors?

No asain ancestory. I am white. Most of my family is from England, I asked the same question to my docs. They told me that they are seeing more and more in Europeans and in America. Unsure of the reason for this.

Odd, but it may be that your case is one of the ones not generated by the gene variants endemic to Asian populations, or it could be a one-off (de novo) mutation.

Also, the great-uncle that died, was he on your mother's side or your father's side? The disease itself seems less genetically penetrant in females than males, but if on your father's side, he might want to get checked out if he has not already - he could have a lower-grade version of it, as the disease is generally autosomal dominant.

Dads side.

My really good friend died of this in 4th grade. The day before the last day of VBS she fell dead in her driveway. I'm so sorry for everything you are going through but you must be incredible.

Holy Hell thank you so much. I am sorry to hear that, I'm hearing a ton of stories. People are strong. So are you. I appreciate the compliment

Did you have a second doctor confirm the diagnosis or did you jump into this based on the one doctor's opinion?

Has the defibrillator gone off yet to save you?

Before they would officially diagnosed me I was told more than 6 doctors, confirmed the decision. They had never diagnosed someone as young myself with such certaintanty that I have Brugada Syndrome, in their careers.

If the defibrilator works 100%, is it possible that you will live a normal life span?

Absolutely

What would happen if you got tasered?

THIS IS THE QUESTION I HAVE BEEN WAITING FOR THE ANSWER TOO. DOES ANYONE KNOW THIS! THIS IS THE THING I HAVE THOUGHT ABOUT MOST IN THE LAST 3 MONTHS.

EDIT: I am just as curious as you are .... lol

https://www.healthtap.com/#topics/will-taser-kill-implanted-defibrillator

Thank you for this. I really hadnt looked into and was always curious. I'll do my best not to get tased. I feel bad if some dumbass doesn;t throw a warning my way before he shocks me with one LOL. If I go out like that... that would just kind of suck.... haha

It definitely would! I really admire how you're handling this, btw. You seem to be in high spirits and dealing with all this very well:) best of luck!

I am :) Thanks for everything.

My brother is having a pacemaker put in a few months. His heart rate is too slow and doesn't respond to high pressure situations, so he passes out when his body can't handle it. The doctor thinks some sort of heart problem plagues our family since our Grandfather died of cardiac arrest after working out a few years back.

The doctors say my brother has a perfect looking heart, but the problem is in the electrical part. I am supposed to get checked soon because I have a very slow heart rate, as well. Your post has encouraged me to get checked sooner rather than later, so thank you for that.

I hope all goes well for you!

Oh, and a question...hm. Do you know of anyone who is suffering with the same thing? Someone you can talk to?

Dude or Gal, This comment has made this entire reddit post, worth while. I was very reluctant to even go get checked. All I can say to you is that you need to understand, that heart conditions are very tricky. If your doctor says that it is electrcal, odds are it is un-curable. However, Modern science has allowed us to live our lives without sustantial stress. You and your family will/have a battle in front of them. But having a ICD implanted is an unbelievably effective procedure. It is standard, and it is safe. You and your family will move on and live your lives normally. You can thank science for that. No matter what you guys will be taken care of. I battle through the absolute worst. Luckily your brother has glaring signs and in turn that will have been the largest factor towards your guys' health. I wish the best for you and your family You guys will be fine

pund dat pussy

I will continue to "pund dat pussy"

Have you ever thought you were dying when in reality it was something unrelated?

More than 50 times, I would say. Heart palpitations are very scary for me. I get a 30 minute spurt of heart palpitations 2-3 a month, where I think, "This might be it"

Wow, I can imagine. I just went through 9 hours in the ER because I went into a-fib. Docs think I had a virus that caused pericarditis, and that I'll heal up just fine, but I tell ya... nothing ever scared me like feeling my heart doing weird things. I'm supposed to eventually need surgery on my skull (long story) and that doesn't scare me as much as the heart thing did. It's being able to feel it, isn't it?

I'm so glad you were diagnosed! That's so lucky. Hang in there and trust to medical science. And whoot to a fellow Seattle-ite (ish). And this is also why we need universal medical coverage. You shouldn't have had to delay this appointment because of money.

Word. I agree

Every 3 months I go into a check at the Electro Cardiolgist's office and the place a magnet to my chest that is connected to a comuter. That computer reads years of data that is stored in the device and downloads it so that it can be sent to other Cardiologists to be studied and examined for possible cures or treatments. Thus far there is no cure or treatment other then an ICD implantation. They can also see whether or not I had any sort of 'minor arrhythmia'.

so have u had any 'minor arrhythmia'?

One so far. I have no idea when it was yet. Will find out soon.

Holy hell guys, Thank you all for everything, I've been responding to stuff for hours. I'll respond to your questions. I haven't left much of anything unanswered. I sincerely appreciate every single upvote and comment and will do what i can do to answer every single question asked

No questions. Just an upvote and hang in there.

My wife has had various ICDs since she was 12. She's now 29. Her doctor's aren't sure what condition she has, but Brugada is the closest they've been able to determine.

Best of luck to you and yours. Thanks for the support. Truley means a lot

What's the kinkiest porn you've ever watched?

Couldn't say... Not into the super kinky shit. But I appreciate the question nonetheless

Annnnd he's dead.

Annnd he's back.

HAHAHAHAHA

I've lost both a mother and sister to sudden cardiac death, both in their late 30s. In both cases there were no symptoms up until right before their deaths. My sister had a full cardiac checkup prior to her death, which turned up nothing, so we assumed all was good.

Long story short, genetic testing and autopsies came up with nothing, and I've had the full rundown of tests, and they all have come back negative as well.

Best they can figure is that my family has some undiscovered genetic mutation that breaks the electrical system in our hearts.

So I'm sitting with a 50/50 chance that I have this mutation. With my late 30s quickly approaching, and the prospect of a 50% chance of death over the next 10 years, I am heavily weighing an ICD as a precautionary measure.

Have you gotten used to the implant? What other activities do you find it interfering with? If it's not too private, what did the procedure end up costing?

GREAT POST! I am very sorry for your loses my friend and I hope that you can stay strong through your battles ahead. Get that bad boy implanted. The first month or two is very minor discomfort what-so-ever. It is fairly inexpensive, and you can most likely get covered fully by your insurance if you write a couple letters and have doctor recommendation, which is not difficult to acquire. Don't rush in there, but think about it seriously. Coming from someone who has one, and is a tall skinny, lanky dude. It would be most uncomfortably for me, and it is not that bad. Get it done.

How has this affected your everyday life? Do you do things differently than you used to? Are you trying to "live every moment to the fullest" or something like that?

At first I just tried to appreciate everything and everyone. I don't do anything different. I try to act as if nothing has happened and live life as someone without this condition would. It can be difficult, but thats the only way to cope with the fact that at any moment I can drop. I have to have faith in modern science to keep me alive, and I trust that it will. I'm still 21, I still go out and drink and live as if I was never diagnosed. Every cardiologist that I have seen has told me that no drug influence (I.E. Cocaine, Caffeine, mary J, Alcohol) has any negative effect on my condition. It is all electrical. Not chemical. Its caused by genetic mutation.

What's your favorite food?

I can't think of anything hipster enough to be funny...

Beets?

Sorry, it's the only pun I could come up with :-(

No HAHA thats perfect if your a Doug Funny fan, which would make you hipster, if you get the reference

If you have an iPhone 4 or 4S you should check out AliveCor. You can turn your phone into a portable ECG machine. Could be useful for those situations when you get palpitations, and you may be able to tell from the strip whether it's "safe" palpitations or not. They allow prescriptions, so your cardiologist should be able to get you one.

Will do without a doubt. Thank you

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Stand in line just like everyone else, I just dont go through the big magnets. there is a big spinning machine that checks me as a substitutes. Plus a pat down and a finger in the rear, but that standard for everyone right.......?

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Only way to be man! Gotta keep the smiles rollin

Are you afraid?

Not anymore. For most of the last year and a half, I was very afraid. No sleep, constant deep thinking and restlessness. Not anymore, after this long, I'm not really afraid to die anymore, plus I know that I have top notch care and that I have a very effective ICD, we have science to thank for that.

A year ago during a basic medical check the nurse listening to my heart said "hmm, seems fine but I might have heard something off, you might want to check with a specialist". So I went and had a specialist do an EKG, and they said mmm everything looks fine, but I suppose some of these waves look a tiny bit like Brugada, which he said he had written several research papers about. So I had a 24 hour continuous monitoring device attached, and they read the results and said, no you seem fine. I was pretty freaked out, saying I could feel unpleasant fluttering when I was lying on my left side, and so they monitored me like that until I said I had felt the unpleasantness a few times. And they said nah, you're fine.

Unfortunately, having gone through all that, I was so freaked out that any little flutter or hop in my heart for months afterward terrified me. Over time I accepted that it was just fear, and that I am fine. I hope. Still, no explanation for why, when I try to sleep on my left side, 80% of the time I feel tightness and unpleasantness in my chest.

I used to get these same symptoms, truth is that Brugada often lays dormant. Its a charasticstic of the condition. you should get checked like every 3 months. Either way trust your doctors man, they know a lot more about this than myself.

Wow. Thanks for doing this. So you have not yet had an episode that caused your device to 'kick in'? If not, did they explain what that would feel like and what you're supposed to do? Although there's no cure, does this implanted device give you a normal life expectancy? Will the device require updating/replacement every few years?

No I have not, they said that 1 of two things will happen (Its important to understand that my defibrillator will only go off if it drops out of its 'heart rate thresh-hold'. Meaning that my heart rate drops below 35 BPM for 12 seconds, or above 265 BPM for 12 seconds. By then I would most likely be suffering cardiac arrest under either circumstance):

1) My heart rate skyrockets to almost 300 BPM w/o warning (Most Likely to occur while I'm sleeping, in which case I would suffer Cardiac arrest, die, and then be shocked back to life. or 2) Drop dead from an immediate cardiac arrest at which point, I would die for 12 seconds then be shocked back to life

300 bpm? Wow, that's brutal.

BRUTAL!

HAHAAHAHA

I guess you might not even know if #1 occurred. That's scary stuff, my friend. Good luck and I hope you never need that thing.

Thank you so much

Hey, my neighbor's middle son, back in highschool, had Brugada syndrome.

...had.

He died December, 2001, snowboarding down the hill in his back yard three days after Christmas. No warning. No nothing. Just dropped dead one evening for no good reason.

I still feel sorry for his brother, sister, and parents to this day. I remember watching the EMTs run him from the back yard to the ambulance. He had been lying in the snow for, what they figure, was the better part of an hour before anyone realized he wasn't moving.

Man...I keep putting in details, and then delete them out of respect for the dead...

...but...he was a real asshole of a kid. I mean, nobody deserves to have that kind of shit happen to them but still. It doesn't change the fact that even 12 years later I still hate him for the hell he put my brother through in school.

Still...not fair what happened.

Good on your doctors for diagnosing your condition before the autopsy OP. Not everyone is that lucky :|

I hope you live a long time.

...don't be an asshole (for lack of a better moral to my neighbor's story I guess)

Very interesting story. More interesting outlook. I appreciate your input man. Thank you for the support

How does the defibrilator stay charged? Or will it simply need to be replaced once it "revives" you?

I enter the matrix each night and wake up with a fully charged battery

I have to go in and get it replaced every 7-10 years depending in its use

Well that sucks....

Besides the implant is there anything that can be done to fix the situation?

There is no cure or medication. The only viable option is ICD implantation.

I'm an MD / internal medicine resident and I am aware of what it is, although it's not something that was taught to me directly in medical school. I've seen a few cases during medical school. I heard a statistic that up to 10% of all sudden cardiac arrests were due to Brugada, so it's not all that uncommon.

My question for you: do all your family members and friends know how to do CPR? If they don't you should insist they learn! Your ICD will almost certainly work, but in case it fails, you want to have a lot of reliable friends around to keep you alive until an ambulance can show up with a defibrillator. I also wonder if it would be worthwhile to get an AED for your home, but I think those things are still pretty expensive.

St. Jude actually granted me one at no cost. It was donated to me. Fliipin awesome right. It's sitting right next to my bed. You are right and I have taken action to educate them, a lot of people nowadays seem also to be CPR certified, but I make sure either way. Thank you Doc.

Does it hurt to get punched in the defibrilator? You know, more so than getting punched in an area that didn't have a subcutaneous piece of medical equipment.

Haha, Yes it does, but more than that it just feels weird. That person usually feels pretty bad when they find out what they did lol

You make it sound like people are punching you on a regular basis. lol

youd be surprised

A girl at our high school had Brugada syndrome. She was just 17 when it took her life. Despite knowing that each day could be her last, she was one of the most cheerful, motivated people I've ever known.

Thats flippin awesome to hear how she was. Thats a tragedy however...

[deleted]

Well I'm sorry to hear that. I really hope that I could provide a little insight!

Hey everyone. I would just like to take this time to thank you all. This post has changed my life for the better. To read all of your stories, was something I truly enjoyed. I woke up today with 900 more comments to read through than I did when I fell asleep which means I have some catching up to do. I will do my best to respond to everyone before the night ends. My family and I have great gratitude towards this community. The idea that I got to share this story with the world, is something I will never forget and I appreciate every last one of your messages. I will be responding until tomorrow night Also I am very interested in helping with any production in a non-profit documentary. If there are any pursuing documentary film directors out there. Please direct message me and I would love to talk to you about that happening. If there is one thing I can leave this community with it is this... Everyone has battles in life. Everyone goes through tremendous tragedy. Don't waste your time bickering about personal beliefs and trying to convince someone that what they believe is wrong. I know it is hard to do and you may feel as though you are saving them... But in all honesty... AIN'T NOONE GOT NO DAMN TIME FO DAT. Anyway KEEP YOUR CHIN UP AND YOUR SMILE BURNING. There is no sense in living a life with nothing to smile about. Each time you do, chalk that shit up as a win.

Would a heart transplant help?

It could however, it would not be worth it. Standard procedure is an ICD implantation. There is no medication or cure for Brugada. It happens when it happens.

What does your family do or think about it? how are they reacting!

My family took this very very hard.My brother especially. This ws something that came as a huge surprise. There was no warnings, no symptons, nothing for us to have believed that it could have been this bad.

Is this something you normally tell people when you meet them or do you keep it secret?

Keep it a secret, but someone always brings it up, so they will know within the first day they meet me. If I know I will be around that person a decent amount of time. I make sure to tell them

Oh man. My girlfriend had to go to the ER a few months ago, after a random seizure. After being on the EKG for a few hours the doctora suspected Brugada (which I had of course not heard of), so they did more tests, and thankfully it turned out to be a false alarm.

But I've had nightmares about that ever since. The idea of sudden death. Do you have nightmares, specifically about that?

Great question and I am sorry to hear about that. I personally don't have nightmares about it. My family has them, im sure. It really is scarier for family than it is for me. My older brother took this all the hardest. He is my main source of motivation.

Could this condition be passed on to your kids in the future?

Yes, they are at high risk

Would you consider an adoption over having kids "natural way"?

I am far away from children, but idk, probably not. I'll think about that when the time comes.

Do you trust that your ICD will be there for you?

Yes I do, i dont have any other option. Defibrilators are also extremely effective.

How do they make sure that it's still active if it hasn't gone off on you in a year or two? Do you have regular checkups where they trigger it or something?

regular check ups to download the data from the device and assess it

Odd question, but are you of Hmong descent?

Half british white guy. Sorry man. Why do you ask?

You said that you go in every so often to get data downloaded from it and such. How do they retrieve said data? Wireless? Do you have a cool matrix socket in the back of your head?

Soon it will be wireless from what I have heard, however as of now, they just place a 'smart magnet' over my defibrilator and download the data through a wire connected to a printer. After that my doctor (who works for St. Jude) takes control of my heart rate using the machine attached to the magnet. She raises my heart rate 5 bpm for 5 seconds at a time, twice. It is to make sure the diffibrilator is working at full capacity. Its a very incomfortable and shitty feeling. Your heart beats backwards, essentially, (From Botton to top, instead of Top to bottom) when she takes over my heart rate. Pretty crazy technology if you ask me.

Wow man that sucks a lot... How has your family dealt with it, and do you have to have someone constantly near/watching you to make sure you are ok if/when it happens? Also are you restricted from doing specific things because of it?

Wish there were something I could do. Just live life to the fullest and come to peace with the fact that life does end.

I really appreciate that! However the most I can do is keep family/friends/coworkers in the loop and informed on what to do, if they see me drop. Family and friends feed off of my energy, I stay positive, joke about it. Thats how I cope with it everyday. When it first happened everyone took it pretty hard. Dealt with PTS after for about a year. Not much sleep.

Enjoy every moment that you can with your family man. I just recently lost my mother unexpectedly, and I sure wish that I could have spent more time with her. Enjoy every second of it and be strong brother.

Thanks man, I'm very very very sorry for your loss. Keep your head up too.

I take Adderall also. Have any doctors suggested that your condition is in anyway linked to taking it?

Not at all. They say that it is in absolutely no way coorelated with any sort of medication. Completely genetic and in no way related. PS that was my first question after my diagnoses.

So do you still take the adderall?

Yes I do, it has no effect on my condition or my heart whatsoever

How tall are you?

6' 6"

When you get your palpitations, do you get any other symptoms. Such as light headedness, a quick increase in temperature, shakiness?

Yes, but palpatations are normal, just about every person on earth gets them, and from what I understand are not related. They are brought on by lack of hydration and lack of sleep. If I get a seizure or faint, thats usually a red flag, however neither has happened.

Are your activities restricted? Like you can't do anything that will get your heart rate up too high?

Only restrictions are certain upperbody workouts, I can not at any point put myself at risk to have the wire that connects the ICD to my heart, dislodge itself. Worst of all I can;t ride roller coasters anymore. IT SUCKS ASS. Nothing worse than standing in line at the New York, New York in Las Vegas and not realizing until you get to the front of the line that you can not ride it. Then refunding your ticket in front of a crowd of people without being able to tell them your not just a pussy, but you might actually die if you ride it lol.

Thanks for doing this! Do you have to wear anything that states that you have an implanted defribilator? Such as a bracelet?

No I dont, but it wouldn't hurt to do

I hope you're still answering... Given everything that's been done to help you, what are your chances of living to a reasonable (say around 50+) age?

Very small from what I've been told, even with an ICD

OP, Are You allowed to drink alcohol?

Yep

What was it like being conscious during the procedure? Do you remember much?

Dont remember a thing.

Are you afraid? Do you no longer fear death?

I fear death. I just have accepted that it will come. I will be ready for it and always go to sleep making sure there is no bad blood or anger toward any friend/family member/ or co-worker

This may seem inappropriate to ask, but.... Have you gone through cardiac arrest yet? If so, is it like blacking out, or can you tell it's coming? What does it feel like when you wake up?

Also - The picture of your defibrillator doesn't seem to be working - Chrome keeps giving me an error that says "This webpage has a redirect loop". I'd like to see it though :P

Fixed it :)

And fortunately have never had an episode

I'm giving you an upvote because that is all I can do. Best of wishes to you from me.

Anything bringing this thread closer to the front page, is fine with me. Just want to build awareness. Your awesome, thank you.

I can't believe nobody has asked you this! My time to shine: Are you allowed to operate a vehicle?

Someone asked extensively above. Sorry to steal your glory brother! Great question however

Wow, sorry to hear this. Thanks for doing this AMA. Are you still pursuing a career path/your dreams that you would've pursued otherwise, or have you altered the course of your life?

Also, do you plan to keep redditing (a self-proclaimed curse on all of our lives), or do you plan to quit reddit after this AMA and spend your time elsewhere?

Still pursuing my Marketing and Business management dreams. So far taking the right steps neccessary, making great money for my age, and have a great job lined up for when I graduate. Gotta continue doing well where I am currently employed as well.

And I will definitely continue to reddit, very interesting place to get news and hear about awesome things. I like to read everything, I never realy waste a lot of time on a post like this one. This is different though, it means a lot to me.

What's the craziest thing you have done still being diagnosed?

The craziest thing I have ever done since being diagnosed is probably trying to help move my belongings into a new apartment, less than 2 weeks after surgery. I put myself at an incredibly high risk of dislodging the wire connect my ICD to my heart. Couldve been fatal. My doctors would have ringed my neck if they knew that.

how much was the total cost for the diagnose + surgery + ICD?

Lets just say A LOT. Thank god I have goood insurance though

Have you played Katawa Shoujo? I wouldn't be surprised if you hadn't, but I'm just curious because... well arrhythmia and such.

IDK... I'm just curious what you'd think about it. & if you'd think it portrays arrhythmia realistically or not.

I'm not familiar with Katawa Shoujo. Any background you can give me on what you are asking about?

What company makes your ICD? Were you presented with options or you just went with what the doctor used?

St. Jude makes the ICD. No options

Ah cool, thanks for answering. Not really related, but I had a spinal cord stimulator and there are only 3 companies that make it, St Jude's is one of them, along with Medtronic and Boston Scientific. I ended up getting one from Medtronic and I am very happy with it.

Forgive my ignorance, but what exactly would a spinal cord stimulator be for, if you don't mind me asking? Wikipedia just says pain and motor issues? I'm learning about all sorts of helpful implants today.

Don't apologize! I should have explained it. I have a chronic nerve pain disease (CRPS/RSD) that affects my knees. Basically it blocks pain signals from going to my brain and replaces it with a tingling sensation that helps manage the pain.

I would add links but I'm on my phone atm. If you google Medtronic RestoreSensor, that's the version I have.

Fellow CRPS/RSD person here. Was the simulator implantation painful? I've never come across anyone with one before.

Nope it was pretty quick and painless. They knocked me out and kept me drugged throughout the process. I had a ton of support. 10 friends/family members in the ER when I woke up. My mom has been RN at Childrens for 27 years. She kept those guys in check. Not like they needed it though, they took every part of the process extremely seriously. i always had a feeling that the doctors were more concerned than myself. The diagnoses had impact on each of their careers I would imagine. They had never diagnosed someone as young as me.

Do you still use Adderall?

Yes. Doctors approved it, said that adderal has ZERO effect on this condition.

On a lighter, horrible, most evil prank to play note, ever fake pass out and really freak someone out for a few seconds?

Haha no, I like to keep it light though, I normally don't tell people the grimm reality of the condition until late. However, that would be over the line for someone who knew the reality of the situation. Plus I wouldn't want someone to preform CPR or try to grab a nearby emergency ICD in the office or at the gym and try to revive me. Entertaining question though.

What's an emergency ICD? I'm familiar with AED, but haven't heard of ICD.

I think he meant AED and might have just used the wrong term since ICD is below the skin.

Props to you for being willing to even talk about the condition. I hope you get to live a long and great life. I had no idea such a condition existed, thanks for making the post and informing us. It might have scared the crap out of me, but at least I'm no longer ignorant about the condition. Good luck OP!

It is velow the skin. See the pic above. THANK YOU THOUGH MY BRO. YOU WERE DOPE TO READ THROUGH THIS WITH

So, how do you get diagnosed with this thing mate? Like I'm a little spun out. You're not feeling well and see a doctor and they said you're literally a ticking time bomb?

How'd that feel? I mean how do you pick up the pieces of that news?

The story is up above brother

Favorite show

Duck Dynasty??? Me too

Do you live each day like it could be your last?

Nope, I live each day normally. Of course I think each morning, that it might be my last. The only thing to do, is to trust that the device in my chest is proven to work. And it does. When I first got out of surgery, I did. But I had PST and I did not know how to take it.

Are you still allowed to drive? It seems that it could be a very dangerous situation if the ICD has to shock you in the middle of rush hour traffic.

See above

My friend got one of these a few years ago because of a condition he was born with that had worsened. His doctor told him that getting shocked feels like someone is drop kicking you in the chest. Have you experienced this?

Read above

Who would you rather fight, one horse sized duck or 100 duck sizes horses?

I could kill a birds and not feel too bad, but a bunch of damn horses... I couldn't live with that shock (Pun Intended)... Plus I'm 6' 6", bring in the damn duck.

Thanks for sharing your story. I have never heard of this before, but glad it was detected before anything actually happened. I sincerely hope everything works out for you and that defibrillator never has to kick in, but if it does, stay strong.

Frickin' love it. Thank you!

What is your opinion regarding obamacare in relation to your heart condition? Does it help at all?

Never thought I would ever be asked that question in my life... Obamacare hasn't had a glaring effect yet.

so are your friends and family going to have to get used to you sometimes literally just dropping dead, fishing out, then come back to life?

Yes they will. Its going to get more frequent as I get older as well :/

say you had an episode. can you just go back to eating that bowl of cereal or would it require a hospital visit?

hospital visit fo sho

Do you exercise frequently or at all? I noticed you said you can lift your arms to far up but do you have issues if you run/jog/bike/walk?

Wish you the best in everything! Thanks for sharing your story!

Thank you so much! All cardio is fine. There is not outside influence what so ever that effects whether or not I have a massive heart failure. its all electrical.

what would happen if you are in a public place without any family/friends around when you 'die' and a stranger attempts CPR while the defibrillator does it's work?

They would not be shocked. Its a controlled shock from what I understand, but I need to look further into that.

I don't really have a question, just wanted to say that after reading all of this you seem like a really cool person. I'm glad you have done this AmA to help raise awareness of your condition. Best of luck :)

So awesome. thank you so much

What about relationships? Do you or have you ever had someone long term? How did they react? And sex, any danger in that apart from dislodging the wire?

Relationships are unaffected to be honest. Yes I have. She was supportive and concerned. She thought about it a lot. Truth is, if anything it brought her closer in the beginning and became a non-topic decently quick because she made the effort to help me forget about it.. Sex is uneffected unless my elbows are stretched beyond my shoulders to far. You would have to be doin some very very kinky stuff to mess with it too much.

Edit: There have been some girls thought were very turned on by it. Had a very hot blonde girl make out with it one time in the heat of things. Felt a little Bad ass for a second haha

What would happen if your heart stopped unrelated to your condition? Would it activate a shock no matter how your heart rate goes below 30 bpm?

Yes it would, they need to take that risk with my situation.