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

Feb 11th 2018 by Metaduckzilla3 • 9 Questions • 484 Points

EDIT: Head up it's currently 2:00am in the UK and will go to bed now so any more questions I will answer just in the morning

My short bio: I was born in January 1999 and have undergone 2 operations in order to correct them. My last post was deleted cause I didn't have proof so you get some lovely scar photos.

My Proof: https://imgur.com/a/WjwDb https://imgur.com/a/KRkBx https://imgur.com/a/mmDCJ Its kinda hard to see but the scar on my front spans from the base of my rib cage to around my collar bone, and the scar on my back goes under my left shoulder blade.

Q:

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.

A:

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


Q:

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.

A:

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


Q:

That sucks, are there any benifits? Like parking?

A:

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.


Q:

That sucks, I wish you the best

A:

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


Q:

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/

A:

I'm cured.


Q:

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.

A:

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.


Q:

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!

A:

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


Q:

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

A:

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.


Q:

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?

A:

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 :)