I'm not quite sure where to begin, nor have I ever done this before, but ask away - I can imagine it'll be quite therapeutic to answer any questions as frankly as I can.

I'm not entirely sure what is meant or needed by proof, but here I am! I tried to get the scar in from the first surgery too, but unfortunately my 2006 webcam is just as disappointing as I remembered.


Thanks in advance guys.

EDIT: I completely did not expect this response, thanks to everyone who's posting/posted. I'm trying to get through all of them but some answers are longer than others, so sorry if I'm taking forever.

EDIT 2: I can't believe this, I'm overwhelmed by all of the positivity from you all. It's nearly 1am here, and we've got a big family Christmas planned for tomorrow so I'm going to head to bed after answering a few more Qs. If this is still active in the morning, I'll carry on, but if not just know you've all been fantastic and have a wonderful and joyous Christmas. I will return, then, either tomorrow or for another AMA when I'm on the road to recovery.

1,200 comments is incredible. I would never have thought this would have happened. Super big thanks.

EDIT 3: So I've slept through the night (santa's visited) and this is STILL on the front page of reddit with over 2,000 responses. I am blown away and feeling so positive it's incredible. Happy holidays to all of you! I'll try and answer a few questions today, but I can't promise anything at all.

What I can promise however is I will do an AMA after the op, some time early next week!

EDIT 4: good morning! This is it - I'm en route to the hospital and the procedure is in less than 24 hours! I promise that whatever the result, there will be another post (or AMA from me!) on here. My intensive care stay could be anything from a few days to a week so even if you don't hear anything until next weekend don't assume the worst! I hope you all had the best Christmases and if you didn't celebrate, a really good Wednesday.

Comments: 2553 • Responses: 39  • Date: 

Poetlaurehate3031 karma

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.

MittenSmuggler2118 karma

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!

Ahzidahakah639 karma

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.

MittenSmuggler519 karma

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.

forgotten_legacy348 karma


MittenSmuggler258 karma

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

DaAwalk130 karma

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

MittenSmuggler265 karma

Anywhere between 8-11 hours.

rednef1377 karma

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

Best of luck with the operation buddy!

MittenSmuggler1070 karma

Correct! Who's this?!

and thank you :)

rednef915 karma

Gary, remember me?

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

MittenSmuggler882 karma

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

tank18051309 karma

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

MittenSmuggler1257 karma

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

KayteeBlue1152 karma

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.

MittenSmuggler1152 karma


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

MittenSmuggler934 karma

Also, your name. Yes.

MittenSmuggler556 karma

I hope so.

RelaxedCease770 karma


MittenSmuggler418 karma

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

awkward_hedgehog266 karma

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!

MittenSmuggler568 karma

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

uscensusbureau338 karma

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

MittenSmuggler826 karma

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.

Tundraaa1518 karma

Well, RIP dude.

MittenSmuggler1174 karma

Thanks man!

AnteChronos3 karma

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".

MittenSmuggler12 karma

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.

Beeftallow420335 karma


MittenSmuggler227 karma

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.

starrecovery333 karma

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

MittenSmuggler563 karma

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

TigerWoods420265 karma

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

MittenSmuggler407 karma

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

Noctrune219 karma

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

MittenSmuggler226 karma

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!

elizabeaver207 karma

Are you scared?

MittenSmuggler406 karma

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.

xkittenpuncher144 karma

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.

MittenSmuggler281 karma

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.

zodar143 karma

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

MittenSmuggler350 karma

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?

courtky92 karma

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

MittenSmuggler263 karma

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.


snikelfritzen81 karma

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

MittenSmuggler159 karma

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

13ROOKS82 karma

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

MittenSmuggler61 karma

Probably like a prune.

daazerr81 karma

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

MittenSmuggler272 karma

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.

vosemdesyatvosem79 karma

Thanks for opening up your heart to us.

MittenSmuggler63 karma


areyoufknserious71 karma

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.

MittenSmuggler205 karma

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.

Z3F59 karma

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

MittenSmuggler99 karma

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.

MittenSmuggler49 karma

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.

MickTheBloodyPirate46 karma

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!

MittenSmuggler96 karma

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!

goodonedude30 karma

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?

MittenSmuggler45 karma

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.

MedicGirl29 karma

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!

MittenSmuggler40 karma

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.

knobbington16 karma

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.

MittenSmuggler25 karma


the internet is bloody wonderful isn't it?

Thank you, dude.

blauman16 karma

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)

MittenSmuggler63 karma

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.

MittenSmuggler16 karma


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.

cosmotravella14 karma

will the surgery be videoed?

MittenSmuggler29 karma

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


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.

cosmotravella26 karma

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!

MittenSmuggler21 karma

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.

Dabee6252 karma

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

And good luck!

MittenSmuggler10 karma

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!