New here

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

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New here

Postby StraightEdgeAdam » Fri Aug 21, 2015 11:22 pm

Hi I'm Adam and I've been meaning to join here for a while so I finally did but then my internet stopped working so I couldn't post anything but I finally can now.
I was born with a univentricular heart defect but it wasn't picked up until I was several weeks old and at the time my parents were told I wouldn't survive then I wouldn't walk/breathe on my own/be very tall. Safe to say I proved them all wrong at every turn. I'm currently 27,as healthy as I can be,tattooed and 6 foot tall!aha. I've had 3 main surgeries: A Pulmonary Banding at 12 weeks, Glen Shunt at 5 years and a Total Cavopulmonary Connection at 12 years old. Since my TCPC I've been on warfarin.
I hope saying all that is fine. Any questions I'm happy to answer.

Lastly, the main reason I joined here was,as I said to my girlfriend,I have some of my own people who know how I'm feeling on certain days,tiredness is a big thing for me,as I expect it will be with most of you and it's difficult to explain exactly how I feel to someone without a heart condition. I look forward to talking to you all!
Posts: 1
Joined: Wed Aug 12, 2015 2:03 pm

Re: New here

Postby Tricky Dicky » Thu Sep 03, 2015 2:59 pm

Hi Adam, welcome to the forum, it's gone a bit quiet at the moment.........

If you are on facebook there is a somerville foundation facebook page and if you can get to the conference in Bristol there will be lots of GUCH people to chat with
Tricky Dicky
Posts: 122
Joined: Wed Aug 16, 2006 1:32 pm
Location: Camberley

Re: New here

Postby Ellie1987 » Fri Sep 04, 2015 7:51 pm

Hi Adam,

Sounds like you basically had much the same treatment as me (my signature at the bottom has it all). What defect were you born with? I was pretty much obvious after a few hours as I was blue! I'm 28 now but I hear you on the tiredness, I have got over the fact I am pretty **** at keeping up with anyone fitness or activity wise. It is frustrating though!
Pulmonary atresia with intact septum & hypoplastic RV
Fontan Repair
1987: left & right BT shunts
1993: bi directional Glenn
1999: modified fenestrated Fontan with Goretex graft from IVC to RA & Amplatz closure of fenestration
1999 to ?: on warfarin
Posts: 10
Joined: Tue Nov 17, 2009 11:59 am
Location: Aberdeen

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