IamA I have 5 congenital heart conditions that my cardiologist says is 1 in every 1000000000 (billion) births AMA!

I saw that you were born in ‘99 and thought to myself, “Why is a child posting on reddit?” Then I did the math and now I’ll be depressed for the rest of the day.

Yeah man I still feel like a child myself but I'm actually in my first year of uni feels bad man

Do you have any restrictions on your daily life? I have a congenital heart defect (Tetralogy of Fallot) and I'm not too restricted, other than no large amounts of caffeine, and absolutely no cigarettes.

Both you and simbaboy823 asked about restrictions so i'll address both of them here. Good question though.

In terms of restrictions I have a few. Firstly, like you, I can't have any high number of caffeine, no binge drinking alcohol, and no cigarettes. I remember one time I was out with friends at a pub and we took turns buying and drinking vodka mixed with monster energy, and when I was on my third glass I suddenly had mad heart palpitations and was struggling to breath. I could feel my heart in my chest like it was trying to escape and they had to get me some water. Likewise, I also cannot have tattoos or piercings. I mean I can but there's a risk of me getting a skin infection. If this infection got into my bloodstream and made it to my heart I would be hospitalised for i think 12-16 weeks on the drip, so its something that I try to avoid.

I'm also restricted in physical activity. My heart rate is much higher than it should be cause my heart has to work harder to get shit done, with my resting BPM being between 90-110 and my active heart rate usually being 200. As such, I get tired so so quickly doing any sort of activity. However, this is the same sort of affect than anyone out of shape would have and tbh if anyone saw my running without knowing my condition people would just think i'm out of shape.

There's a few other weird things that happen due to my heart condition that don't really affect my life too much, like when I get cold my skin (especially my hands) will turn blue and purple, I get heart palpitations so sometimes my heart will skip a beat or put a third beat in. Oh and I'm also on the priority list in the UK for flu jabs, which means that every October I go in to have my jab and i'm usually the youngest cause all the other people are senior citizens. I didn't get my flu jab until November this year and ended up getting tonsillitis because of it, so I guess that can be a restriction, as I'm more susceptible to illness.

Thanks for the question, that took longer than I thought lol

That sucks, are there any benifits? Like parking?

I can't actually drive yet but I don't think so. I don't think there are any clear benefits but it's something that I've had since birth so any disadvantages I have are something that I've grown up with and basically got use to.

I guess a benefit would be I live a far healthier life than I would without it, and i'm constantly checked on so if something goes wrong with my heart, unrelated to the conditions (like build up of fat etc) then i'm warned in advance about it.

I guess a benefit would be I live a far healthier life than I would without it

Being basically "forced" into leading a healthy lifestyle, does it piss you off when you see other people wrecking their shit by smoking, bingedrinking, eating absolute shite, etc?

Not a health nut myself btw, pretty sure my blood type is mayonnaise at the moment.

I've actually never really had an interest in smoking and drinking so I never feel jealous about that. I also eat whatever I want, but also think about my digestion and such when doing so. During my first term of uni I basically lived off takeaway, so you can see how """"healthy"""" I really can be lol

That sucks, I wish you the best

ay thanks man appreciate it. I wish you the best too.

That benefit sounds like how people with AIDS tend to live longer because of the restricted lifestyles and regular checkups.

yeah basically

Your lucky your in the UK man. Your condition would cost thousands here in the states.

Yeah I looked up the cost of the operation and I think it was around $500M, America is so fucked lol

So do you stay fit mostly through diet, or weight training and no cardio?

Diet and swimming, although I don't go swimming as much as I should. I've also played drums for nearly 10 years so there's that too.

I think they have robotic hearts now for people like you.

Part of my heart is actually made of Gore-tex so close enough I guess

Waterproof and breathable hearts, nice

better fuckin hope its waterproof mate

Interesting, I have a friend who also has an extremely rare heart condition. So rare, in fact, that I can't even find it when I Google it. Is your condition called Trichosamin Atresia by chance? That would be interesting, because he's actually never met anyone else who has had it. I guess it's unlikely, but I have to ask!

It isn't actually. The rarity of my conditions come from the fact that I have so many which aren't meant to happen at the same time.

What congenital heart conditions do you have? Is it pentalogy of fallot?

Ok I just had to look up what pentalogy of fallot was and no its not. However, I do have some of the ones that are in pentalogy of fallot. I've got VSD, ASD, Double outlet right ventricle, coarctation of the aorta and transposition of the great arteries.

Jesus Christ!

I don't really know my conditions severity, but guessing from your username my heart is completely fucked up.

You have a hole between your ventricles, another hole between your atria. Your pulmonary artery and aorta switched places. That means the blood that gets oxygenated comes back to your heart and goes right back to your lungs again... coarctation of the aorts: your aorta is very narrow... :/

Damn that really is fucked up. Thanks for clearing up what is actually inside of me lol. I know that the way it happened was when I was still a fetus the heart apparently forms by having two rod things curl around each other, but mine curls around the wrong way. Almost like building a tent, messing up the first instruction, and not realising until the tent is complete!

I'm happy you're having all these surgeries though. I'm sure they fixed most of it.

They just got to keep an eye on it. There is still a possibility I will need more operations but theres been no reason to have one so far.

If you want my advice. From someone with no medical anything.

Try not having heart holes.. and from my experience, dont let people punch your sternum/

I'm cured.

A picture to help clarify the non-repaired heart's anatomy, from what I can gather above. Stay strong - and keep fighting the healthy fight my congenital defect brethren!

http://www.heartbabyhome.com/2011/10/dorv-tga-vsd-ps/

Damn I didn't know about this website. I put in my details though and no image came up :(

Multiple holes in your heart. Blood is supposed to leave your heart from the left side but god jacked up the pluming so instead it leaves from the right... also your pipes (blood vessels) are to small putting extra strain on the heart the lungs and the rest of your blood vessels... that’s just 4 out of 5 I understand. Did they reconstruct your whole heart or just replace it?

From what I remember they repair the holes but kept one open and created a gore-tex valve and tube that fed from the hole to where ever it needed to go. Sorry can't be more specific but I suck at biology :/

You are a combination of every heart defect I’ve learned about so far in PA school. How nuts! How quickly did you get your first surgery? Transposition alone is pretty much a “get this baby to surgery stat” situation.

As quickly as it could take for me to go from Cambridge to London after birth. My first op happened when I was 1-2 days old.

Holy crap that was young.

Even my son was 5 days old for his first open heart surgery.

A good bit of that was waiting for parts.

I know they couldn't operate long term because I was too small. Apparently they left my chest open so my swollen heart could go down before stitching me up.

Yeah, that got mentioned as a possibility w my sons first op.

The fact that the ability to do that exists is astounding.

Definitely, I had no idea I was literally kept open for the weekend.

taussig bing anomaly?

Looked it up and yeah I have that but I also have other stuff as well lol. I bet if you paired all of my conditions differently I would have so many different types of named conditions.

General Question. What is your thought process like. Like how do you feel Everytime when you read something with a probability of like 1 in a million/billion. How do you feel about rare thing(s)/abnormalities as in general? Like you, you've got your own heart condition right! Now how does it feel when you sometimes see other people/see it on a news channel or via any social media or real life interaction. Are neurons firing up the thoughts at the same pace that your Heart BPM is?

I'm not sure how do I articulate. This is a bit of more from a person's psychological POV. Hope you get what I'm trying to ask.

Is the general question asking about how I feel when I think about my heart conditions rarity, and how I feel when I see something or someone else that has something as rare as my condition?

Not the guy that asked, but yes.

When it comes to my own rarity, I guess i'm kinda numb to it, or maybe i'm simply unable to fathom such an idea that i'm one in a billion in terms of heart conditions. Like I could never really believe just how rare it is. It's like imagine if I told you you had something that was 1 in a billion, like how do you react to that, but also factor in that people have told me how rare it is since I was young, but only recently told me the actual numbers, so it wasn't a really big surprise but nonetheless a surprise.

When it comes to seeing other people with rare medical conditions, I just think its really cool (depending of course on how much it affects their life negatively you know). Sometimes I'll be like "oh yeah I got something rare too" but other times I'll just completely forget. Like example, the guy that Rain Man was based off of was probably a 1 in a billion case, but whenever I see the shit he could do I'll still be like "Holy shit" you know. Just cause I have sometime really rare doesn't devalue the rarity of other cases I guess.

Have you ever used your health conditions as a pickup line?

I'd have to be a slick motherfucker to pick up a girl by saying that I get tired easily and have low stamina, but if I see an opportunity arise I'm sure I'll give it a try.

[deleted]

What she doesn't know won't hurt her

I was born with pulmonary stenosis and had a balloon valvuloplasty in 1988 (2 years old). How many surgeries did you have?

I have a yearly cardiology appointment and unfortunately I’ll probably need another surgery later in life.

Sucks to hear about the additional surgery, wish you the best

I had 2 surgeries, one when I was 1-2 days old in Jan 1999 to just correct the urgent stuff, and then a second one when I was 5 months old in June 1999 to correct it long term (scar on front is first, back is second) I also have yearly cardiologist appointment at Addenbrookes and sometimes I have MRI scan, exercise tests, etc. which only happen every 2 years. There's a likelihood I will have another operation too, cause my operation was so new that if I was born in 1988 there wouldn't have the tools needed to save me, which also means its long term reliability is unknown.

I do a stress test (exercise test) and MRI every two years and a EKG and echocardiogram every year.

I luckily have no scar although I have met people younger than me with the same condition that have a scar down their chest from open heart surgery, so I think the ballon valvuoplasty was new option in the late 80s.

I still go to the same Children’s Hospital although my original cardiologist has retired.

Best of luck.

Best of luck to you too. Also question from me but do they do Ultrasound on you too, they do it for me when i do my check ups and was just curious.

Yes, I think echocardiogram and ultrasound are interchangeable. It’s amazing now that minutes after your tests you can see 3D images of your heart! My biggest issue now is “valve regurgitation” which has been stable.

I think I have that too, is that where blood goes back the other way after the valve does a pulse?

Yeah. I think there are different varieties but basically the blood leaks/flows not in the right direction which can cause strain on the heart.

You can see it pretty clearly on from the echo. Mine is with the pulmonary artery. I believe blood leaks back into the right ventricle.

Yeah I definitely have that too, I remember them showing me the echos for it.

It is now possible, in some cases, to get a new valve placed via the cath lab.

Source: my son was in the Melody valve study. It rocks.

Never hear about that! If I need it then i'm sure my cardiologist will inform me of it. But I think one of my valves is gore-tex.

As a Dad with way too much experience in this stuff.

Learn about your condition What is where, hiw things were repaiered, future plans, etc. Be your own advocate. Understand what and why things are being done.

You never know when you may need to give a history.

Definitely, my cardiologist is making me remember all my heart conditions names, and slowly teaching me about it.

Are you able to donate blood? I am also born in January of 1999, and have only 1 congenital heart defect, VSD. I am able to with donate no problem, they just need to double check it every time.

I've never actually gone to donate blood, so idk. The only reason why I wouldn't be allowed is cause my blood has gone through that machine that keeps me alive while I'm under the knife. Also what day? we may be long lost twins.

This might seem like a weird question, but I'm an aspiring doctor (currently in medical school), and I'm seriously considering a career as a pediatric cardiologist.

What was your relationship with your cardiologist growing up? What do you wish they did differently?

Cool question

Up until about 16/17 I had two cardiologists that saw me every year called Doctor Yates and Doctor Simmons. Funnily enough Doctor Yates was the same doctor that diagnosed me during the pregnancy scan.

My relationship with them was really good. gonna be honest I didn't really remember their last names until my final years with them. But they were always friendly and I never had a problem seeing them. Just be honest and upfront about it my man :)

Do you have an ECG on your heart we can look at?

Got it!!!! This was from when I was 17 but the data is still valid.

https://imgur.com/a/nWBAD

Could you maybe tell me what these squiggles mean pls

To keep it simple, a lot of it looks like what they call ST elevation and ST depression, without going into to much detail it's typical indicative of heart damage or ischemia.

Is it valid proof that I do in fact have a heart condition, cause some people are casting doubt about it.

Not particularly honestly.

What does it tell then?

Hello, thanks for sharing your story! In your life you and your relatives must have received more than your share of bad news, and very worrying pieces of information from healthcare practitioners. As a young doctor myself, my question is: what is the best way to give bad news, from your experience? Which professionals made these moments suck a little less, and how? Thank you for your time, best of luck!

I'm gonna be completely honest with you, I've never actually received bad news from doctors. I was operator by Professor Martin Elliott and he did a good enough job so that my heart hasn't failed me yet, nor shown any immediate sign of failing. All of the bad news giving probably happened when I was first having my operations and when I was first diagnosed, which happened when my mum was still pregnant with me and just after my birth. I'm sorry I can't really answer the question but thank you for showing interest, and I hope you have a good career as a doctor

What are some restrictions that you have?

Look at my response to -PM_ME_YOUR_SMILE-

Have you picked up any specific wisdom about life from all of this? How does this affect your daily routine?

That humans are fragile af

In terms of daily routine, it only affects me if I have to do exercise.

Proof?

Other than a couple of pictures of your big dark nipples?

Here, feast your eyes on these squiggles https://imgur.com/a/nWBAD

and you're just jealous of my big dark nipples.

I have 2 heart conditions as well, so I’m glad I’m not the only one, or I’m the only young person with multiple heart conditions lmaoooo. My question is, how do you stay positive or stay calm when something happens in your heart? Like I’ll have palpitations or whatever, but afterwards I’m always freaked out and can’t really function for a bit. Also whenever I think about, to me it’s just a huge burden, but then again, most of the time it really doesn’t bother me. But thank you for sharing, I wish you all the best and I hope you are doing well! Thank you!!!

When I get palpitation I'm like "Ok here we go again" have it gets hard to breathe but its only a few seconds. I think i'm pretty chill about it, I have faith in Prof Elliott that my heart won't collapse at a single extra beat. Cardiologists also said that the palpitations are natural for my heart, one of them explained to me but I've forgotten.

Also like the username, you a Nirvana fan?

Oh yeah, I'm a huge Nirvana fan! Also, thank you for the advice, I'll try it next time things start acting up. But yeah, love Nirvana, one of my favorite bands. Is there any album/song you like in particular? Thank you again!

I like all of their shit man. It usually depends on my mood but I always go for the live version rather than album. It feels more chaotic and energetic. My fav being Live at Paramount 1991, you can find it on the Super Deluxe edition of Nevermind. I also like all of their songs on their main albums but my favourite songs of theirs are Breed (Live at Paramount), School (Live at Paramount), Negative Creep (Live at Paramount & Live at Reading), Tourette's (Live at Reading) Territorial Pissing (Live at Paramount), and Dumb. But I like all of their songs off all their albums. What about you?

I love all of those songs too! I personally love Lounge Act, Negative Creep, Big Cheese, Mr. Moustache, Dumb, Heart Shaped Box, and this could go on for a while lmao. But yeah, Paramount was a great show, and so was Reading 1992, so many great shows they played. What's your favorite album, or one that stands out? I love all of their albums, but you can probably guess the one that "sticks out" lol

I would have to say my favourite is probably either Nevermind or In Utero, I think the live versions of Nevermind songs are better than album versions so I'll go with In Utero too, although i think Nevermind has the better songs.

Are there 7 of you on earth? If not, those statistics are off. 🤔

By theory there should be 7 more people. However, I don't know if my cardiologist meant 1 in every billion births or 1 in every billion congenital heart defect births. If its every birth then there would be 6 other people, but if its every case than the number would be lower. I didn't get the specifics, I simply asked him what the rarity of my heart condition was and he said 1 in a billion (although thinking about it I think it was 1 in every billion cases so there will be less than 7 of us as defects happen in every 1000 births I think)

You are not alone

its like captain planet but every member is really shit

Does the high heartbeat freak you out? A few times i had a resting beat of 150 and thought i was gonna die lol

When it's resting its fine, but when it gets to 200ish I can feel it in my neck and forehead and chest, all my veins pop out, I can't really breathe. Its scariest if I have energy drinks cause I'll just be drinking some monster and then my heart is at 200 and I can barely breathe but I'm still sitting down and not sweating at all. It's like if I ran a marathon in a split second. It usually freaked everyone else out at PE more though, and so many people would say "Ok ____, don't die on us" its like burned into my head.

Before my pacemaker got inserted, and I was having THOSE fun issues, my bpm went from 3 to 186. I can't even imagine 200...

Man its a wild ride. It's like taking coke but without being high and more of the dying side.

Also note: Never had cocaine before, and taking it would probably project me to the astral plane of high BPM and bad decisions

Never did coke either unless it's the fizzy stuff in the can.

Oh I get it from the fizzy canned stuff to.

Do you take like beta blockers or something to keep the pulse down? I'm on those for POTS (which I'm not trying to say is as serious as what you have)

No, i'm currently not on any medication. However, there was a point in time where I was going to be on Rat Poison to artificially thin my blood. But the problem resolved itself and I wasn't put onto it.

How do you stay happy?

I actually also have depression and anxiety so Sertraline currently feelsbadman

I see you can't drink alcohol very much, but can you smoke weed? Or at least do edibles?

I've also never smoked weed cause i'm a good christian boy.

A good Christian boy who won't be tempted by the devil's lettuce.*

Keep that temptation away from me this is a christian IAmA

You can’t drink alcohol, so what’s your go to at parties?

I can drink alcohol, just not binge drink.

My go to at parties are vodka mixes, but I don't often get drunk, so like Lemonade?

What can you never do?

hmmmmmmmm

I would say Rollercoaster rides, but I've been on a few when I was 16 so maybe not.

I'm gonna guess any sort of drug that increases heart rate like cocaine.

Could you even fight 100 duck sized horses, or 1 horse sized duck? Would you get too tired?

I would get sooooooo tired from that. The 100 duck sized horses would probably swarm me, and the horse sized duck sounds terrifying.

Does the fact that you have it change the statistics?

What do you mean? I don't fully understand. It still 1 in a billion, and I'm the one.

Well, you are now part of the stats, and since it is so low, I wonder how it is determined.

I was determined by my cardiologist. I asked him what it's rarity was and he told me the maths and said 1 in a billion.

There are seven billion people in the world, chances are, there are six people like you!

My heart condition factors in ever billion births WITH congential heart defects, not every birth ever, so its likely lower than that.

and by i'm the one I mean i'm the one in a billion lol

How does it feel to have 6 other people just like you on the planet? Would you be wiling to organize a meet up with the other people that have your condition?

I mean it does feel weird but like I said in another question, I can't really fathom how rare it actually is.

I would be willing to meet up with other people but my cardiologist said that it was next to nothing that I would ever meet someone with the same things I have.

Thats what the internets for! While its true that you (probably) wouldn't meet someone like yourself, and in all likelihood the other people are either in China or India, your doctor could ask his other doctor buddies (All doctors know each other right?) or you can just post online, in several languages, and wait and see if any other patients would like to meet. You probably won't even be able to speak the same language. But once you all meet, you can summon the eternal dragon who will grant you 3 wishes, so ya know... incentive.

I could start a thread but I have no idea if anyone would look, although 3 wishes is definitely a good incentive.

Have you met any of the six other people like you?

Fuck no, and I don't think I ever will.

Is it a compliment or a insult when girls describe you one in a billion?

I literally cannot see anyway that that is an insult, so a compliment for sure.

How close have you came to death? Do not mean to sound insensitive

Hours and millimetres

Lucky you?

I....... I guess?

Aside from that guy being an obvious asshole, you are lucky. If you were born maybe ~40 or ~30 years earlier you would of had a lot less chance of surviving.

Btw, we kinda have matching scars (CAUTION: EXTREME PALENESS)

ayyyyyyy scar buddies

Yeah they said that if I was born 10 years earlier I would have undoubtedly died.

EDIT Oh shit I just saw your username and realised you created a Reddit account solely to reply thanks a lot man :)

U ded?

Only on the inside.

Your responses to everything on point. What is your favorite food?

I'm a fucking food whore my man. I'll literally eat anything tasty, but rn im really into spicy shit. My housemate whose half Jamaican introduced me to Jerk Chicken for the first time in september and that shit is holy. I also like currys, my dad cooks a mean curry and his dad grew up in India so we got that authentic shit boi. I guess if its one thing though i'm gonna have to say Chinese takeaway, that was favourite takeaway when I was 15-18. but literally anything tasty

Note: This was legit the hardest question on this AMA so far.

Your dad's Indian? You half Indian OP? I am Indian too! HI5!!

Both my dad and granddad are fully English, and i'm half English half Scottish. My granddad was born in Indian and was there until he was 17, but I myself am not indian sorry :/

It's cool brother! We are all humans first! :)

Too true man. Too true indeed.