HI. Newbie. Diagnosed at 49 - panic!

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HI. Newbie. Diagnosed at 49 - panic!

Postby Katem » Tue Feb 24, 2015 3:35 pm

Hi all.

I've just found out I have a 15mm VSD at the grand old age of 49. I have an appt on Thursday to discuss surgery, but I'm feeling very.....not sure. Scared I guess. Shocked. Not sure what to think. I'm normally so cool calm and collected it has knocked me sideways. It didn't help that the news was delivered by letter on Saturday, less than a week before I had a clinic appt. It's nice to be kept in the loop but I really would rather have been told face to face so I could get some reassurance! I suppose the flip side is I have time to think about what I need to ask. Finding information on the net hard to come by as it all seems to be about babies.

I knew I had a leaking mitral valve following an echo 12 years ago (was suffering palpitations). A repeat last year showed leak was moderate and apparently recommended a non urgent referral. Was in the middle of a house move so delayed. A year later I saw Cardiologist who greeted me with the words 'so you have a hole in your heart?'. I actually told him he must have the wrong notes!! Apparently the echo report said ?VSD obscured by aneurysmal septum. A TOE has revealed the 15mm hole.

I'm struggling to understand how this wasn't spotted 12 years ago, but I suppose that's me feeling a bit bitter as I let it all sink in. Maybe it is of no issue anyway?
As I said I cant really find anything out and would really love to hear from anyone who has had a similar diagnosis. I know many people have far worse conditions, but right now I'm all at sea and am desperately trying to shield my family from the fear I am feeling. I'm normally a tough cookie, in control, no time for weakness, a natural born supporter But I feel weak and really quite pathetic !!!! Ignorance of the facts is hell for me and I know I will be 'better' after my consult, but this week is really dragging.

What I would like to know right now is how big is 15mm in the scheme of things, and does 'above the limit for device closure' as stated in my letter imply too big or big enough? I wont take any answers as gospel, just curious to know a bit more really. Thanks in advance. I actually feel lightened just having typed all that :). Best wishes Kate.
Katem
 
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Joined: Tue Feb 24, 2015 2:51 pm

Re: HI. Newbie. Diagnosed at 49 - panic!

Postby Tricky Dicky » Wed Mar 04, 2015 9:45 am

hi Kate, are there any GUCH specialist nurses at the hospital where you saw the cardiologist? If so you could try asking them.

If you are on facebook you could also try asking on the somerville foundation facebook page, it tends to get a bit more traffic than this forum.

Good luck
Tricky Dicky
 
Posts: 120
Joined: Wed Aug 16, 2006 1:32 pm
Location: Camberley

Re: HI. Newbie. Diagnosed at 49 - panic!

Postby Katem » Thu Mar 12, 2015 11:40 pm

HI

Thank you for taking the trouble to reply and for the useful information. MUCH calmer now I have seen my Cardiologist. Can have a device closure...phew!
Still come away with a few questions that need answering (despite writing loads down!) but will take your advice and seek out the GUCH nurses.

Thanks again

Kate
Katem
 
Posts: 2
Joined: Tue Feb 24, 2015 2:51 pm


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