Looking for other teenagers aged 13-22 with TOF to talk to

A forum exclusively for 13-19 year olds to connect and share experiences. Always let people know where you are going and don't give out personal information online.

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Looking for other teenagers aged 13-22 with TOF to talk to

Postby SamH » Thu Jul 15, 2010 7:01 pm

[color=indigo]Hey everyone, joined GUCH today, looking for other teens around my age with TOF.
I'm a 19 year old girl, and I've had three corrective surgeries so far, my last was a valve transplant last May.
I'd be interested to talk to anyone around my age who's been through similar experiences!
Look forward to hearing from y'all :)

_Sam x[/color]
Posts: 1
Joined: Thu Jul 15, 2010 6:56 pm
Location: Lisburn, Northern Ireland

looking for other teenages aged 13 to 22 with TOF to talk to

Postby Forlyd » Tue Jul 20, 2010 8:11 pm

Hello Sam,
At 62 years old I am a bit wide of your age requirements, But I am sure you will find others of your age to chat with.
Welcome to the Guch board. It is nice to hear from our younger Tof's.
take care now,
Love from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

Postby deesea1 » Thu Jan 27, 2011 6:38 pm

Hi Sam, i'm also 19, i dont have TOF, but i have sevre CoA (coarctation of aorta), i have not had any operations yet, my doctors have spoken to surgeons but no one wants to operate, i really want surgery as atm i have really high blood pressure, therefore i'm not allowed to do much which is no fun!

I was just wondering your thoughts on your surgery? i know we dont have the exact problem but i'm curious to find out how it was for you?

Would be nice to hear from you!

Coatation of the aoerta.
Posts: 4
Joined: Mon Jan 24, 2011 5:13 pm
Location: London


Postby sally101 » Sun Feb 06, 2011 4:03 pm

Heyhey Im 17 and i have TOF, Been told about 4 - 5 weeks ago i had it.
Im having a valve placed.
Would be nice to chat sometime?
Posts: 38
Joined: Fri Jan 21, 2011 7:21 pm
Location: UK

Postby Livi » Tue Feb 08, 2011 5:58 pm

Hi both of you!
I am 21 and was diagnosed with TOF at birth. Had one surgery when I was 10 months, and had another just under 6 months ago, pulmonary valve replacement.
If you want to chat or have any questions or anything feel free to post em on here or pm me :) xxx
Posts: 15
Joined: Fri Sep 23, 2005 3:39 pm
Location: West Sussex

Postby Arjun93 » Tue Jun 07, 2011 12:25 pm

Hi all,
My name is Arjun and I am 17. I also had TOF, diagnosed at birth. Fortunately I have needed only 1 surgery as of now at 1 and a half. No memory of the incident.
Posts: 3
Joined: Tue Jun 07, 2011 12:13 pm
Location: India

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