Hi all,
At birth I underwent surgery and had the TGA operation. I’m now 27 years of age and starting to worry about complications that could potentially arise as I get older following the operation and being a Congenital Heart Disease patient.
I’m hoping to reach out to someone who may be in the same situation as me or in fact be able to shed any light.
Thanks in advance.
Hello,
Welcome to the forum.
There is a very good support group for adults and young people who were born with congenital heart disease, The Sommerville Foundation.
Hopefully they will be able to help you further.
The BHF has some information as well.
bhf.org.uk/informationsuppo...
There are several members of the forum who live with congenital heart disease too and I am sure they will be along to share their experiences with you soon.
Hi George _96A very warm welcome to you.
I also underwent OHS at birth I was a day old I was born with congenital heart disease not the same one as you but coarctation of the aorta which I had repaired at a day old. Will need surgery for bicuspid aortic valve eventually. Have you been told by your cardiologist at your checkups of any future surgery?? As milkfairy suggestd the simmer ville foundation are good I follow them on Facebook and there's also a congenital heard disease group I follow on face book I will have to get back to you with the exact name 🙊🙈😅. From what I hear most congenital heart disease patients can live normal lives just depends on your overall health and particular defect. Wish you all the best and hope you don't have any future surgerys. 👍😉
hi Yumz!
They’ve not actually told me, I just know that I have a slightly leaky valve following the operation and when I have researched this I’ve read about the consequences of it. Valve replacement/repair! I’be got everything crossed that it doesn’t start leaking to the extent that further surgery is required.
Aw ok George did they say to what extent the valve is leaking and what valve it is? Mine is the aortic it's severe aortic regurgitation and moderate stenosis so classed as mixed valve disease and will eventually require major surgery to replace it. Yeah some times reading about it on Google can make it even worse I'm guilty of doing that alot 🙈😳🤭. Hope your doctor and cardiologist can give you bit more information about it to help put your mind at rest. Take care all the best!
they didn’t say the valve, but they did say it is a couple of mm, I think it grew by 1mm in the space of a 4 year period.
Yeah you find they progress very gradually it's taken bout 6 or 7 years for mine to get to severe aortic regurgitation.
hi Yumz, 7 years following your operation?
I had a catheter balloon valvotomy when I was 13 and I'm 25 now so 12 years actually for it to get to severe. So still need valve replacement surgery for my bicuspid valve. Hope that helps.
Hi, my friends son underwent surgery a couple of hrs after birth for the same medical condition. He had annual check ups at GOSH until he reached 18. He is now under the local heart hospital and has annual check ups. I think he's now in his late 30's & has had no serious health problems though he had been told more then once that he has to give up wrestling!! He has been told that at some point he may have to have an ICD fitted but that's not something that's needed right now. I hope you find the support you're looking for.
Hello!
This is really reassuring, thank you so much! I feel this is likely the case for myself. Similar story in the fact that I had my operation at 3 days old at Birmingham Children’s Hospital now go to my local cardiology unit yearly.
Luckily, I’m not wrestling.. so no need to worry there. 😉 again thank you, it’s great to hear from someone who knows a like for like experience.
Hoping my situation turns out to be the same
Hey, I was born with TGA. I had senning procedure when I was born and had narrowing of the chambers too. I’m in my early 30s
I am having loop recorder fitted as told that people whom had my surgery etc likely develop rhythm issues.
Happy to connect if ever want someone to talk to about it.
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