full aortic replacement surgery?

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full aortic replacement surgery?

Postby deesea1 » Mon Jan 24, 2011 5:36 pm

Hi, i have CoA and therefore also have Hypertension, but my doctors say its a really rare condition which surgeons dont really want to operate on, as the entire aoerta is disfigured and will need to be replaced, for now i'm on various hypertensive medication, to help maintain my BP.

I've only been diognosed a year ago but they are not sure whether i have had my problem since birth, i am finding it more and more difficult to live a "Normal life", as i feel i'm not really living more just surviving, i know beggers cant be chosers and the saying normally goes "your stuck with what you've got" but my doctor has said he will speak to the surgeons again as he knows what i'm going through.

I just wanted to know if anyone knows any real information on my situation? i cant really find much about full aoerta replacement surgery, and any infomation of patience in similar situtions would be appriciated, would be nice just to talk to someone "like me" :)
Thanks!
Coatation of the aoerta.
Hypertension.
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Postby elizabeth » Tue Jan 25, 2011 9:40 pm

Hello, deesea1

Welcome! (I shouldn't be on the teenagers board really as I am too old)

Which hospital are you being seen at? There are some hospitals which are specialists in heart problems that people were born with (like you might have been) - so hopefully you are being seen by someone there.

There are some people - teenagers and older - posting just now on the general forum about surgery coming up. It's a slightly different operation but just the same feelings, so have a read and you can join in if you want.
http://www.guch.org.uk/forum/viewtopic.php?t=4861
http://www.guch.org.uk/forum/viewtopic.php?t=4874
http://www.guch.org.uk/forum/viewtopic.php?t=4870

I hope all goes well for you.
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Postby deesea1 » Thu Jan 27, 2011 6:25 pm

Thanks,
I'm seeing a Hypertension specialist at Barts Hospital, but thats mainly just to control my BP, my doctor is always talking to surgeons about me, but it looks like no one wants to do the op as i'm only 19, and its not a valve but the the aoerta itself that needs to be replaced.

I know that it would be a very serious operation, but at the moment i am not allowed to do anything a "normal" male at my age would be doing, which is both frustrating and at times depressing.

Thank you for the information and for the links!
Coatation of the aoerta.
Hypertension.
deesea1
 
Posts: 4
Joined: Mon Jan 24, 2011 5:13 pm
Location: London

Postby elizabeth » Tue Feb 01, 2011 12:36 pm

Hi, Dave

Hope things are going well.

If your doctors/surgeons are not sure of their next step, you can ask for a second opinion. There is a list here of the specialist GUCH centres:
http://www.guch.org.uk/info/GUCH_Specialist_Centres.pdf

The biggest 2 in London are the Brompton and the Heart Hospital. They deal with lots of people with the sort of problem you have so they might be able to think of something which the Barts people haven't yet seen.

You get referred via your GP but if there is a difficulty you can call the hospitals directly and they will try to help you.

Good luck
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Postby deesea1 » Tue Mar 22, 2011 5:06 pm

Will do! Thanks very much for all the infomation :)
Coatation of the aoerta.
Hypertension.
deesea1
 
Posts: 4
Joined: Mon Jan 24, 2011 5:13 pm
Location: London

Postby gosnold » Fri Oct 21, 2011 8:42 pm

Hey
Again I'm to old to be on here to as I'm 24. I have coarchtation of the aorta and was born with it. Having grown up with it, it's an accepted part of me, I probably wouldn't be the person I am without it. I had an aortic stent to try and correct the narrowing but it didn't work as although I have the stent the weren't able to stretch the aorta and its narrowing again. I am also on BP medication and its sucks taking tablets everyday that probably the bit I'm not quite used to yet.
Don't let your condition hold you back as you still have to live life. I'm currently at university and pretty much join in with everything. Yeap I get a bit more tired than everyone else and I can't go running (not such a bad thing) but the important thing is just to work with in your limitations. I can't imagine it can be easy adjusting to be newly diagnosed but the important thing is learn to live with it don't let it get the better of you.
Hope this has helped a little and if you have any questions I may be able to help with let me know :D
Abbie
Co-archtation of the Aorta
Parachute Mitral Valve
Mitral Valve Regurgitation
Aortic Stenosis
Aortic Stent
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