im new, just got news too

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im new, just got news too

Postby becki_boo » Thu Sep 18, 2008 6:27 pm

so yh, this is my first post, hmmm.

so my names Becki, 15 yrs old, currently doing GCSE's.

when i was born, 2 of my arteries were the wrong way round, and one of my arteries was too small, so they took one from my left arm, and replaced the messed up one. i also had a hole in my heart.

that was all before i was two weeks old, and took 7 operations to fix. i had another operation when i was 1, just to make sure everthing is working fine.

i am 15 now (as i said) and a few days ago i went for a checkup and an ECG.

they told me i have a narrowing artery (the pulmory one i think- the one connected to the lungs) and i need an MRI scan to check it isnt gonna be a problem. if it is then im having an operation- theyre gonna put a spring in the artery to make it grom so blood can flow easily.

im really scared.

my dad thought this site would help me with confidence and stuff.

so um yh, thats me and my past.

Becki xxxxx
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Postby blonde_saint » Thu Sep 18, 2008 6:31 pm

Hi Becki, welcome to the board. I'm no longer a teenager (only just though as I'm 20) Your dad was probably right about the site helping you as you'll be able to get advise from other people your age and make new friends on here as well in similar situations.
Deb x
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Postby becki_boo » Thu Sep 18, 2008 6:41 pm

thanks deb, i can see already that this site is going to help me through difficult times.

:)

becki xxx
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Postby Hj285 » Thu Sep 18, 2008 7:09 pm

Hiya,

I'm not a teenager at 23, but I just wanted to welcome you to the board and say that I hope you find it useful. Best wishes.

Hayley x
PA, VSD, dilated aortic root, aortic and mitral regurgitation, PH.
1985: Waterston shunt
27/05/2011: ICD implanted
AF x5 all cardioverted
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Postby becki_boo » Thu Sep 18, 2008 7:33 pm

hey got a question, didnt know where to post so posted here.

is GUCH on bebo?

( i know some poeople would think bebo inappripriote- but it has a privacy setting on profiles, so only friends can view- so dont worry!)

thanks.

xxxxxx
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hello

Postby superwoman » Thu Sep 18, 2008 9:26 pm

Hi

Welcome to the board.

GUCH doesnt have a BEBO page. We do have a Facebook and Myspace which u are welcome to join.

Sure you will find the board here of use as someone usually knows the answer or has experience of the question

Good luck

Gill
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Postby elizabeth » Sat Sep 20, 2008 9:21 pm

Hi, Becki

Hope you don't mind me replying here even though I'm not a teenager any more... :shock:

I was also born with TGA (though was fixed a bit differently). It's very scary when the heart stuff you put at the back of your mind suddenly jumps out and scares you, but I always find that lots of information helps me worry less.

Firstly, narrowing in the artery leading to the lungs is not that uncommon in people who had the switch operation. Obviously it's not something you want to have wrong with you, but it can be fixed: it's routine to the doctors - though obviously not to any of us ( :shock: ).
This page might help give you a bit more information about long-term outcomes after the TGA operation you had:
http://www.bhf.org.uk/yheart/default.aspx?page=331

The doctor you saw seems to have explained the possible next steps to you very clearly. You say you might have to have a spring put in your artery: is this going to be via a catheter which goes into your leg? If it is, this is a much less major procedure than open heart surgery. You might have had a cardiac catheterisation when you were a baby, but there is more information here:
http://www.patient.co.uk/showdoc/27000292/

Have you had an MRI scan before? If you haven't it's probably another unknown and another thing you're worrying about. I've not had one myself but apparently they're not too bad - and they don't hurt. The British Heart Foundation website has a video about having an MRI scan, which is also part of their teenagers website:
http://www.bhf.org.uk/yheart/default.aspx?page=221

Most cardiac centres have a Cardiac Liaison Nurse who can answer lots of the questions you might have without you needing to go and see the consultant again - and it's their job to be there to help :). You may have the telephone number for the one at your centre, but if you don't then you or your dad could telephone the hospital and ask to be put in touch.

I hope some of this this helps a bit. Good luck with it!

Please do come back with any questions you have, too: as Gill says, someone will probably have been in exactly the same situation before and can tell you what it was like for them.
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Postby becki_boo » Fri Sep 26, 2008 6:39 pm

wow thanks these are awesome web sites!

makes everything seem more clearer.

and the MRI scan doesnt seem as scary as i thought it was!

thanks

becki xxxxx :D
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Postby blue_dreamer » Mon Oct 13, 2008 7:48 pm

Hi Becky,

I had an MRI, they're really horrible (sorry to be negative), but apparently you only one every five years or so.

I have narrowing arteries too, and the doc said that sometime I might have to have an operation to put a balloon or something in to widen them again. I've never had an operation before and I'm really quite scared about it, but it's all OK so far.

Then they told me if that makes no difference I might need a heart-lung transplant and that really freaked me out!!! :shock: Thank god that's not happening yet!!!
Image

"...because if there is one thing I've learned from all I've been through, it's that you only regret the things that you didn't do." Cameron Duncan
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Postby pinklittlekimmie » Mon Nov 03, 2008 5:12 pm

Hi i have TGA and pulmonary stenosis (which i believe is a narrowing of the valve not the artery) amongst other things! I was also put into the world of you might need more surgery around my GCSE's and have some idea of how hard it can be. If you ever wanna chat then email me or add me on msn its kkkimmie@hotmail.co.uk ! ! Welcome to the site and hope all goes well. This place is amazin sometimes I dont no how i would have got through the past few years with out it!!

Kim x
Live life to the full!
TGA, VSD (too close 2 tricuspid 2 b sorted), Double Outlet Right Ventricle, Pulmonary Stenosis and Complete heart block!
Glenn shunt in 1993
Coils via cardiac catheterisation in 1998
TCPC and dual chamber pacemaker in Jan 2008
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Postby Groovydudette » Tue Nov 04, 2008 11:40 am

yo!
I'm 15 too! isn't that great.
But i have completely differetnt heart defaults, cardiomyopathy (enlargement of heart) bradycardia (slow heart rhythm) have articfical pacemaker, oh ha can you believe, I just found out yesterday from my great mum that i have a leaky valve! wayyyy!
Anyway, it's really not common for youngsters like ourselves to merge in a place like this! So welcome!
Heather
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Postby Skaliakbar » Wed Nov 05, 2008 10:59 am

I am not a teen any more (21) but i also just joined in few weeks.
I was born in Pakistan just came to London 5 years ago.
I hope you find it useful and make new friends
I always found myself lonely :cry: at teens (never found any one like me or similar to me ) but i am glad you found this website early enough
Good Luck
Kulsoom
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Postby Lucy GOSH » Fri Nov 21, 2008 4:38 pm

Hi, I'm 21 and had Transposition of the Great Arteries too. I've had an MRI once and in my experience it was absolutely fine. I was worried it would be painful in some way or that the injection of dye into my arm (so they can see what's going on on the screen) would be unpleasant, but it was completely fine.

Quite exciting, in a weird sort of way. The only thing was, it went on for ages (about an hour) so it was a bit dull. Although I was allowed to watch a 'Friends' DVD whilst I was inside the machine, which was quite cool!

Keep checking this message board and post if you have any further questions, people are really nice and there'll always be at least one person who has experienced exactly the same feelings or experiences as you! If you have Facebook, search for both Transposition of the Great Arteries and CHD in general and there are loads of groups (although this is the best website I've found!). Good luck with everything xx
Transposition of the Great Arteries
Switch Operation 1987 Great Ormond Street
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Postby Diane J » Fri Nov 21, 2008 7:49 pm

Hi Becki, I'm sure you will find lots of info and support on here. My son is a bit younger than you, almost 13 but he can remember his last op really well and also the mri scans he has had; so if you want to chat with someone nearer your age than us oldies I'm sure he would love to. Just private message me if you'd like to and I'll give you his msn or facebook details.
Very best wishes, Diane.
Diane Jones. Mum to Edward age 16, born with TOF and Carys age 13. Ed has had two lots OHS. Currently awaiting an MRI scan to establish how soon his pulmonary valve will need replacing again.
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Postby SG » Sun Jan 04, 2009 10:55 pm

I have an MRI scan coming up next month. It is scary, but think of the positives - the sooner the better!
It's the beat.
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