British Heart Foundation
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Hi, I'm Katie, and i had open heart surgery when i was 15, as i was born with double outlet right ventricle

My name is Katie, my story's quite long so i won't go into too much detail. I'm 18 and i was born with a form of congenital heart disease called Double outlet right ventricle (a marginally more serious form of fallots tatralagy). - sorry if i spellt that wrong - anyway, i had surgery the day i was born, and then open heart surgery when i was 18 months, but none of that i remember. however i then had open heart surgery again when i was 15, following from which i had two post surgical infections, both of which at some point was misdiagnosed as endocarditis (although thankfully they weren't), and the second of which i needed further surgery for. i then also had more unexpected following surgery last October because my sternal wires had come undone and which were sticking into my chest, and which had been causing me considerable, and misdiagnosed chest pain for 9 months before the operation to get them removed. i still sometimes get nightmares about the surgery and everything linked to that, but i'm having therapy which is helping, and i really wanted to meet some more people who would understand a bit about what it's like, and maybe be able to help others if i can in some way, as i have learnt soo much from my heart condition, about life, friendship and what it really is to be strong. i am quiet lucky in some ways, as my heart condition doesn't really impact my day-to-day life, and I've never been on medication for it (apart from antibiotics), i will need surgery again in the future, which will be a (pulmonary) valve replacement which this time can be done by catheter- so thankfully no more open heart surgery needed (hopefully)!

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Hi Katie. Wow, what a busy 18 years you've had! I've only been dealing with my heart condition for six years but, like you, have found it a fantastic learning experience. I feel it has definitely changed me for the better.

I haven't had open heart surgery, but there are lots of people on the forum who have, so I'm sure you'll hear from plenty of them soon :)

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Hi,

thank you for that, it's really nice to know i'm not alone! :)

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Hi Katie,

Welcome to the forum. My word you have been busy, I can relate to the wires, mine have given me considerable discomfort since my op 16 months ago as has the scarring. Glad to hear your is sorted and hopefully the therapy will be of considerable benefit to you.

Happy to have you here, you are a welcome addition and look forward to your input as well as our lovely members giving their experiences for you too.

take care

Mark

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Hi Mark,

yeah, the wire thing is really irritating, it's now happened to me on 2 different occasions (two operations), and in total 5 of the wires have come loose! but apparently it's really rare?!?!

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I had a recent plastic surgeon appointment where he was looking at both the scars and the protruding wires.

Choice A, re-open the wound and attend to the wires. Not currently an option as am due for an angiogram Friday as I have been having problems.

Choice B, Cortisone injections directly into the scarring and beneath. I chose B he did tell me it would hurt and he asked nicely for me not to punch him. I thought he was joking....and I have two more sessions of this

hey ho roll on Friday!

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Ouch! My toes are curling at the thought! I had a really painful injection (in my bum cheek - tmi? ha!) before my daughter was delivered to help her lungs develop. I was the same - thought their warning was a bit OTT for a wee jab and then was shocked to discover just how painful an injection could be! I can still picture the pain six years on. Hopefully the next two sessions are a bit less unpleasant for you...

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well with me and the wires i just had an operation to take them out. it was day surgery, but it was general anesthetic again. maybe it depends what the original surgery was, because i had to push really hard to get an appointment with the specialist because they didn't believe me when i said i thought that it was the wiring. i only knew that it could be the wiring because it had happened to me before. it took about 9 months!

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First complained about a fourteen months ago got referral to plastic surgeon, then two previous appointments with him six months apart before last weeks episode. Initial advice was to massage the scar and bumps. Hey ho, in comparison to others I am doing ok

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wow that's a long time! I've never been refereed to a plastic surgeon, for me i had to have them removed, not sure why tho? anyway, the injection thing does sound quite painful, good luck with the next sessions! :)

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Hi Katie.... wow you have been through a lot and you sound a very mature and wise young lady.

I have not had the major surgery that you have had.... I have had a device fitted... a much less intrusive surgery however I have just discovered last week that my wife had come out so having to go through the whole thing again on a couple of weeks. They say it' only 1% of people that have any issue with wires.... but sire wish I was a 99%er 😀

I do hope all ops are now over for you and you can move on to enjoying your life and having fun now.

As you say in some ways the heart conditions and ops do have an affect on us in appreciating friends, family, and definitely evaluating what is important in life.

Welcome to the forum and you are definitely among hearty friends 😀 x

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Er "wires" not wife oops

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Hi,

thank you for understanding, and making me feel to welcome! :) i hope i don't have many more op's either, although i know i'm going to need another at some point, but that might not be for another 10, 20, maybe 30 years, so i'm too worried for now! :) i do like to think it's made me more wise, but i can still be a bit of kid sometimes! :) x

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I think you are an amazing young lady.... and delighted you are " still being a kid sometimes" I am 56 years old and I still love to be silly ..... it's what keeps us young forever 😁😁 xx

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Hi Katie! its nice to have read your story. I am confident that my son still will live more actively soon after the open heart surgery.

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