Newbie

A place exclusively for people aged 39 and over to discuss issues affecting older GUCHs

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Newbie

Postby CoralB » Sun Jan 01, 2012 8:48 pm

Hi, only found this site this week.

My husband is the GUCH, first diagnosed with heart trouble in May 2010, then initially also diagnosed with PAD in 2011, however following further invesitgations for PAD, the vascular consultant suggested Coarctation of the aorta might be possible as all his PAD investigations had turned up nothing and the symptoms of PAD mimic those of COA. We were then in September 2011 refererred to a specialist GUCH centre in Manchester and are awaiting further tests before they decide on the best course of treatment.

Its been a trying couple of years, and I am frustrated and angry at the COA not even being considered by the cardiologists in the first 18 months. Hubby also got BAV, Mild LVH, Hypertension, Mild LV systolic disfunction, and AF - previously DC Cardioverted June 2010 and now on Amiodarone after having gone back into AF September 2011.

We find it really difficult to get proper and full information from the cardiologists, and whilst we are hoping that the things will improve now through the GUCH team, I am still researching everything on the internet, though that can be confusing, and not always a good thing.

We are worried about the COA, and how life is going to be for us in the long term, as life has changed drastically in the last 18 months or so, husband is too sick to work (11 months) now, and I struggle with physical condition due to spinal surgeries over last 5 years.

Hoping that through this site, we can make new friends, and learn more about the condition and recovery and living life beyond diagnosis and repair, some support from people who truly understand what life is like living as a GUCH or a partner, loved one of GUCH would be massively appreciated!
Wife of GUCH
Hubby diagnosis:
AF May 2010
BAV
Mild LVH
Mild systolic disfunction
Hypertension
Coarctation of Aorta diagnosed @ 50 awaitiing further tests and then repair
CoralB
 
Posts: 5
Joined: Sun Jan 01, 2012 8:24 pm
Location: United Kingdom

Postby elizabeth » Mon Jan 02, 2012 12:02 am

Hi, Coral

Welcome (to you and your husband). :)

That all sounds like a total saga. I hope the GUCH team can provide a bit of clarity and a plan of action.

One of the tips that comes up often here is to write down all your questions before you go to the appointment. That's really helpful both in helping you work out what it is you want to know when everything is whirling around in your heads and in focusing when you're at the appointment.

There is also a Cardiac Liaison Nurse in Manchester who might be able to help you with some of the issues that are less "medic"y but no less important. Ask to be put in touch, when you're at your husband's appointment. Apparently they are very helpful (am seen elsewhere so no personal experience).
TGA - 1976, Mustard 1977 & baffle repair 1984.
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elizabeth
 
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Location: Oxford

Postby CoralB » Mon Jan 02, 2012 5:42 pm

Hi Elizabeth

Nice to meet you (so to speak). I definitely intend to write down my questions for our next appointment. My poor husband (Tony) is really going through the mill with it all at the moment, and since the diagnosis late in 2011 of the coarctation, he seems to have gotten a bit worse really.

We have got 3 GUCH specialist nurses who work at the Manchester Royal Infirmary in the Heart Centre there, so hoping that over the coming weeks and months they prove to be worth their weight in gold!

Thanks for your support
:D
Wife of GUCH
Hubby diagnosis:
AF May 2010
BAV
Mild LVH
Mild systolic disfunction
Hypertension
Coarctation of Aorta diagnosed @ 50 awaitiing further tests and then repair
CoralB
 
Posts: 5
Joined: Sun Jan 01, 2012 8:24 pm
Location: United Kingdom

Postby Mike_H » Mon Jan 02, 2012 5:48 pm

Hi,

I've had dealings with 2 out of the 3 CLN's and found them to be very helpful :D

Mike
TGA 68 - Mustard 70
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Mike_H
 
Posts: 571
Joined: Thu Jul 01, 2004 10:33 pm
Location: Wigan


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