Hello, I am a n00b..

We're all more than just our Heart Conditions, so if you want to discuss last nights TV, your favourite sport, or just the price of fish, this is the place.

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Hello, I am a n00b..

Postby Emmabeth » Tue Jun 28, 2011 6:56 pm

Hi,

I am new here, I've been searching for AGES for some sort of support forum, as all the info i have found about heart problems is aimed at the crinklie brigade, and though I am sure the info aimed at them is as valid for me as it is for them I am having some slightly stroppy 'BUT I DONT WANT TO POTTER AND GARDEN AND SMILE AT GRANDCHILDREN, IM 31'... moments and looking for people slightly nearer my age group to talk to.

So.. here I am. Im grumpy and a bit anti social - I have five dogs and far too many other pets, I live in Manchester and am still getting to the bottom of my diagnosis (a lot of 'ooh err, well tahts odd' going on).

My funnest hobby so far is collecting weird trophies from hospital visits - I have a picture of my stomach (the inside!) and a copy of a echo scan of my heart. (Ok thats a rubbish collection I will try harder!). Mostly its fun because it freaks out drs. :D
Emmabeth
 
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Postby rachiez » Tue Jun 28, 2011 8:46 pm

well hello emmabeth .
welcome to guch forum , i have only been on here a couple of days and i have learnt so much from all the different threads ..

hopefully u will find answers and friends here too .
rach x
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Postby Hj285 » Wed Jun 29, 2011 7:32 am

Hi

Welcome to the board. I've been here a few years now after GUCH being recommended by my cardiologist. Hope you find the board useful.

Hayley
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 Mike_H » Wed Jun 29, 2011 6:53 pm

Hi Emmabeth,

Welcome to the board.

Hows things? Are you being seen by the GUCH unit at Manchester?

Mike :)
TGA 68 - Mustard 70
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Postby Emmabeth » Wed Jun 29, 2011 8:27 pm

Hi everyone!

The what unit... that'd be a no! No one really knows what to do with me and they have only recently told me that my heart has been knackered since birth, and missed at that stage (and er, all other stages, up til now).

Its not quite as scary as some of you lot seem to have - mitral valve regurge and left ventricle impairment.

There is some argument going on as to whats been there forever, what has caused what, as the valve doesnt show any signs of being clogged up or calcified or damaged.. just, not functioning properly, and apparently my left ventricle is the wrong shape (ooh its too rounded, much like the rest of me).

So.. I was diagnosed with a heart murmur about 10 months ago, which was clearly the cause of symptoms id been having for the better part of three years (and more vaguely, all my life) but my GP missed it (i was on diuretics with all the fairly classic heart failure symptoms, but he put it down to me being fat).
Eventually i nagged to be referred to someone else, anyone else and went to see an endocrinologist who listened to my heart... no one else had until then (not even after an xray showed a slight enlargement of my heart), and he heard the murmur and set the ball rolling.

So.. now im getting conflicting stories from cardiologists, surgeons etc as to what happens next, and so far really NO ONE has told me the full details, implications etc of anything (nor given me any info about anything!) - they do all whinge horribly if i mention finding things out for myself off the internet though!
Emmabeth
 
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Location: Manchester, UK

Postby Mike_H » Wed Jun 29, 2011 9:34 pm

I've sent you a PM

Mike
TGA 68 - Mustard 70
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Postby elizabeth » Wed Jun 29, 2011 10:10 pm

Hi, Emmabeth

That all sounds like a right lot of fun. Good that you've ended up here, though, you seem to be in the right place.

I'm sure Mike's told you this but just in case some future person is reading this and thinking "ooh, that's just like me", there's a list of specialists in people born with heart conditions, to be found here:
http://www.guch.org.uk/info/GUCH_Specialist_Centres.pdf - and those of us born with heart conditions should be seen by them. OK, public service announcement over.

<rant>Why there isn't a little flag waving in all the heads of cardiologists who don't deal with patients like us, that reads "send this person to a GUCH cardiologist", I really have no idea. As you'll see from this site, if you have a read through of threads, this happens time and time again.</rant>

I've found this forum, and the friends I've made through GUCH (meeting at events, etc, etc) to be really great in sharing the annoying parts of having a heart condition [yeah, folks that's what I like about you :wink: ] - because there's not a whole load of explaining to do and they understand/have been there, etc. Not saying you shouldn't talk to the oldies on whatever other sites you have been frequenting but you might have more in common with us here. :P
TGA - 1976, Mustard 1977 & baffle repair 1984.
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