IamA I am a 21 year old male currently two days away from having pioneering open heart surgery; a procedure in which you are, essentially, dead for periods of up to 20-30 minutes. AMA.

Oh shit, I've had this! Two times, baby!

I have Marfan's syndrome, which resulted in aortic dissection. Got med-flighted and everything to get the ascending taken care of. Very rough experience, especially when I had to get the descending replaced a couple months later. Went through this exact stuff though, the cooling, the "bloodless field," which is what they call it when they pump out all of your blood to work on your heart (and which I think is a particularly evocative phrase).

You'll be alright, bro. The hospital stay will suck -- boring as hell, painful, food sucks. You'll likely have tubes snaked into in various spots, literally packed into your abdomen, making it hard to roll around much. Try to sleep as much as possible, and if you start feeling a little hinkey or seeing things, tell somebody and tell them a lot. ICU delirium is very common, but very easy to get a handle on.

And most importantly, trust the hospital staff. Doctors and nurses are going to be coming in to do gross, uncomfortable shit to you. It'll get to be sort of rapid fire after a while -- every time someone walks into the room you'll be wondering what new thing they'll be subjecting you to. Getting the hair-thin wires of an external pacemaker removed from around your heart is by far one of the strangest, most uncomfortable feelings I've ever experienced.

But remember! That's all it is. Discomfort. You're going to be fine. Uncomfortable for a bit, but fine. These people know what they're doing, it's fairly ho-hum for them, and they're not going to let anything bad happen to you. Excelsior, brother. Feel free to talk at me if you have any other questions. Fucking reverse AMA!

Oh, also, where are you getting it done?

Edit: obligatory "thanks for the gold" edit! Not that I really deserve it. All I did was not die.

How incredible - you had a Pulmonary Endarterectomy too?

Your words were exactly what I needed to hear - a frank and truthful bit of hope from someone who has been there first hand. I kinda have in mind what the hospital stay will be like after spending a few weeks in there last time, but I'm just hoping that with time and friend visits and my ipod, it'll all be over and I'll be out before I know it!

I'm getting it done at Papworth Hospital in the UK, it's the only place in this country that can do it and they've now got a 95% survival rate so I know that I am in the right (and only) place.

Again, thank you for that comment dude. I really needed it.

Edit: no way did I get reddit gold on my first ever thread! yay!

Can I gift you some iTunes money for Christmas? I don't have much but I'd like to help you get through your stay a little better! Maybe buy an album or a movie or something.

Awh you really, really, don't have to. But thank you for the offer, means a lot that people out there care. I'll have my own TV there and I've got Spotify too so there's no worries on that front - but dude, I appreciate it.

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I'm already subscribed, but does it just add to your subscription? Either way, I'd love one - PM heading your way :)

How long does each surgery take? I can't imagine it to be a short procedure.

Anywhere between 8-11 hours.

Holy fuck! I know you! Your name is James, you used to give me guitar lessons!

Best of luck with the operation buddy!

Correct! Who's this?!

and thank you :)

Gary, remember me?

I was so very shocked to open the thread and find it was you!

Of course I do man! It's been too long; hope you're still playing and learning and staying cool.

You should do an AMA after the surgery. Would love to hear about what happened when you die and come back etc.

That's a really good idea! Wifi permitting I'll totally do one when I'm able.

I don't have a question, I just wanted to tell you that you are painfully gorgeous.

Edit: 21 year old female. That last picture does NOT discourage me, but I'm also drunk.

Gee, thanks.

http://imgur.com/fldkTAu

When you come back to life, could you legally be called a zombie?

Also, your name. Yes.

I hope so.

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I think your username has already helped me to overcome any obstacles I had.

I'm a girl and I'm with him. Once you get out of the hospital you'll have dates every week for the rest of your life!

If you're with him you shouldn't be asking me on a date, that's cheating!

Just what kind of dead are we talkin'?
What is the recovery process for that kind of surgery?

Literally no vital signs dead. Like dead dead.

You're placed on a cardiopulmonary bypass machine (as with most other open heart ops) but the difference with this procedure is that the surgical team put you in a state of deep hypothermia so that full circulatory arrest can happen. The blood is essentially 'drained' from your body so that the surgeon can operate on the heart and lungs without an obstructed field of view.

The reason for the hypothermia is that in order for the brain and other organs to survive being without blood for such a long period of time, it is absolutely vital. Irreversible brain damage occurs after 5 mins or so without hypothermia, but with this technique periods of up to 30 minutes are considered relatively safe.

Well, RIP dude.

Thanks man!

Literally no vital signs dead. Like dead dead.

Not to discount the experience, but I wouldn't call it "dead dead" unless you had zero brain activity, which isn't going to be what happens (no one has ever been revived from being brain dead).

In short, "dead" can mean different things (kind of like how "blind" can mean things other than "completely unable to see") and you'll be "clinically dead" but not "brain dead".

Didn't really think that one though, my bad.

It's not discounting anything - you're right. I still think this is one of the closest-to-death operations around, though.

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Oh man, I'm sorry to hear that you're waiting for results over the holidays - I've every faith you'll be okay though. Hope everything goes well for you.

How will this impact on the health of your pubic hair?

Some call it a 'subtle rejuvenation' but I prefer 'blossom'.

Best of luck to you my internet friend. I wish you a speedy recovery. Describe to me, what would be your favorite meal?

Anything Thai. Preferably a Panang curry, please and thanks Mr Woods.

Can you document your thoughts before and after the procedure and title it something like "Dead Man Vloging"?

I've asked my Mum to keep a video diary of what's going on, not necessarily for the internet, but for me to look back on in later life. I think I'll also do a little vlog or two, it'll certainly pass the time in hospital anyway!

Are you scared?

I'd be lying if I said that I wasn't. The whole idea of the surgery to me, whilst seeming super space-age and cool, really does freak me out.

I'm trying not to dwell on any feeling like that though, because I know that this op is an inevitability in my lifetime and only 70% of people with my condition are able to have this done. So I've been given a lifeline, really. A fucking scary one, but a lifeline nonetheless.

hello there buddy. 2 questions : 1. why do you need to get this type of surgery? what kind of ailment/illness do you have? 2. what's the success rate of this operation?

best of luck to you buddy.

I have a condition called Chronic Thromboembolic Pulmonary Hypertension caused by lots of clots in the lungs. Prior to this surgery being 'invented', I would have been a heart/lung transplantation patient (which would mean a very low survival chance) but now with the Pulmonary Endarterectomy I have a realistic 95% chance of surviving this operation.

Should I not take the operation I would have a matter of a few years to live - from anywhere between 2-10 - wherein every day would become harder to do even the simplest of things. I can't even walk 100 metres without being out of breath now, I cannot imagine how bad it would be 10 years down the line without the op.

At least you can claim the Viagra is for the pulmonary hypertension

Oh god I've been taking Sildenafil for weeks now, I've gotten so used to tenting that maybe I'm doing it in public without realising.

Is this what it's like to be old?

Unrelated, but.. what is the cool looking tattoo on your chest?

The tattoo, ironically, says 'Call the surgeon, mend the pieces' - it's a line from a William Fitzsimmons track called 'If You Would Come Back Home'. The entire album that track comes from really helped me in recovering from the op last time, and I was fortunate enough to meet William himself and tell him the story. His response was that stories like mine are the reason he carries on writing music. Means a lot.

http://imgur.com/v7OXv1W

Did your surgeon comment on the tattoo? I'm just curious what he/she said.

I actually don't think that either the surgeon who performed my embolectomy or my surgeon on friday has seen it. Oh god.

Ask the doctor to take a picture of your blood drained penis please. I'm extremely curious as to what it would look like.

Probably like a prune.

What will be the first thing you do after your surgery?!?

Probably ask for more morphine.

When I get out the hospital, though, I can't wait to just be able to walk around our neighbourhood and town. Just be normal again, really. I certainly won't be going for a whisky or six, as much as I'd like to.

Thanks for opening up your heart to us.

^heh

What's wrong with your heart exactly; was it some kind of genetic defect or did you have an accident? Also, did the doctor leave the decision up to you to have the surgery or was it a scenario where they just said, "We need to do this, it's your only option"?

Also, the story behind "MittenSmuggler". Feel like I need to know that. Hope everything comes out alright for you.

The actual cause of my condition is unknown - I'd been treated for breathlessness as a child, given a multitude of inhalers and told I had asthma etc. Obviously doctors don't expect bloodclots in the lungs of an 8 year old, it really isn't something you'd look out for - when I got to 14 however, my shortness of breath because of the clots had grown so severe I had to go to the hospital A&E and explain (with my mum who was convinced there wasn't anything wrong) what was going on. They wired me up to an ECG and took my oxygen sats, which came back as ~65% and realised that something was wrong.

Fast-forward a very long story kinda short, I was rushed to another hospital where they had a paediatric ICU where they performed an emergency pulmonary embolectomy (which had a few complications and I ended up spending a few weeks in the ICU - more on that later) but I managed to pull through and give myself another 7 years and here I am today.

I think the reason that I'm having this operation though is because, actually, 7 years ago it was what I needed to have done. At the time, however, the youngest person to have had the operation was about 4-5 years older than me and the only authorised centre for the operation probably wouldn't take me on as a patient (it can be too early in the condition's formation to have to op) and realistically, considering just how sick I was before the embolectomy, I probably would not have survived it.

MittenSmuggler is also hospital related too, the ICU had me wear gigantic pink mittens whilst I was out cold to warm me up - when I came to, I loved them so much that they got smuggled out of the hospital with me.

What will your 'last words' before your 'death' be?

That's a toughie.

I can't predict how I'm going to be when I'm all drugged up at 6am on the morning of the surgery, but all that matters to me is that my family is going to be there at all times.

Just to let you all know, I made it! I'll do an AMA next week, for now I'm morphemes up to the eyeballs.

That's amazing. I don't really have much to ask. Maybe, what is the recovery time looking like? What is the first food you look forward to eating when you come out?

Best of luck to you!

The recovery time is 6-8 to maybe 10 weeks. The average in-hospital stay is around 16 days or so.

There's the nicest Italian place nearby and I think I'll deserve a good meal!

Hey man! Good luck this week. This is less of a question and more of some shitty dark advice, but I'd advise you to spend these next two days relieving all of the stresses you can, so that when you drift under that anesthesia you aren't thinking about anything except how great it's going to be to wake up.

My thoughts are with you! Here's a question: do you game? Also, if you do, why do you game on a PC?

That's a good call man, spending tomorrow with the entire family is going to be so special. I think that'll help, for sure.

Hello! Thank you for answering questions.

What cardiac problem do you have?

Are you looking at needing an LVAD or will this surgery solve your problems?

Thanks again for answering!

Fortunately an LVAD doesn't seem on the cards for me. Allegedly this op will alleviate the pressures in my heart/lungs to normal and it's considered a curative solution to CTEPH, the problem I have.

Saying that made me happy, normality is just around the corner.

You're an absolute warrior. Nothing but respect for you my friend. I have a feeling that all is gonna go well and you'll come out of this with a hell of a story. Best holiday wishes to you; we'll be thinking of you here in Japan.

Japan?!

the internet is bloody wonderful isn't it?

Thank you, dude.

How did you realise that you had Chronic Thromboembolic Pulmonary Hypertension?

When did your doctor decide that you need this surgery?

How much did this surgery cost/how are you paying for it?

(sorry if it's a bit intrusive, feel free not to answer)

CTEPH wasn't actually diagnosed until this October, I've been waiting for the op ever since. I think that perhaps if I wasn't so unwell before my embolectomy, and it wasn't an emergency surgery, I could maybe have been diagnosed and cured 7 years ago - but that's just the way it goes sometimes.

The surgery for me is free, because (fortunately) I live in the UK and our national health system covers everything. The only thing that we'll have to pay for is the 'resident accommodation' for my family to stay in as the specialist centre for the op is in a tiny village in the middle of Cambridgeshire.

http://imgur.com/6uJ55fB

So I'm here! Meeting the surgeon, again, a little later on - keeping my spirits high by listening to State Champs and talking to the other patients. Let's go! I'll update as soon as I can. Massive thank you to everyone who's commented and up voted and well wished and been super supportive. Love to all.

will the surgery be videoed?

It unfortunately will not, but there is a 12 minute interview/documentary about it here:

http://www.youtube.com/watch?v=UIm73H36Dv8

there have been a little over 4,000 of these procedures done worldwide I believe, and it's really pretty fascinating. If you've got a spare few minutes and/or an interest in medical science, it's definitely worth watching.

thanks. BTW, my wife had open heart surgery when she was 12 years old. She is now 60 with 3 successful kids. I love science and technology!

It's always super reassuring to hear of other people's successes following their ordeals. It gets hard to see past the operation date at times, but watching recovery videos/hearing first or second hand accounts of other people getting through it has been a godsend.

Are you at all looking forward to having one of those experiences people who have died always talk about?

And good luck!

I honestly don't think that'll be the case at all - my previous surgery had complications and I ended up spending a few weeks in intensive care, but from the anaesthesiologist putting lines in to waking up a few days post op I honestly have no recollection of anything at all. It didn't even feel as if any time had passed at all really; what seemed like a few moments actually were a few days, which to me is insane. In a way, that's what I'm hoping for this time too. The shorter it all seems, the better I guess!