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

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Postby Darrenh » Thu Apr 14, 2011 7:26 pm

Hi my name is Darren and I'm a newbie. Having read through some of the posts on here I feel rather humble when speaking about my own problems, as there are clearly more people out there worse off than me! But hey, I'm worried sick so hopefully someone may have experienced similar.
I had open heart surgery aged 8 at Guys hospital and I am now 43. I was diagnosed with Cor triatriatum ( a congenital disease affecting the atria with a membrane separating one of them into two ) I made an excellent recovery and was discharged from follow up care aged 15. I went on to play professional football both here and abroad and have been working in coaching all my life since and truly felt no complications whatsoever. However, two years ago I started suffering from abnormal heart beats and high blood pressure which have presented in different forms, but all evidence collected from monitoring has been benign - in other words my cardiologist has said they are harmless. They don't feel like it!! Anyhow, my big concern is the fact I have now had two heart attacks within 5 weeks of each other recently. The first one was a big one affecting my RCA, but I had a PCI and stents immediately so there was little tissue damage to the heart. Despite watching my diet, being on the blood thinners and blood pressure meds, passing a stress test up to 12 minutes with no symptoms, I then suffered another heart attack 5 weeks after which didnt present until my 12 hour bloods meaning I lost some heart muscle. The cardiologist said I was unlucky to have had this one!! -....( Cheers!) I'm lucky to be here I know but I cant help thinking the arrythmias I have are a result of the operation I had when I was eight, and they have increased dramatically since the attacks. I cant help wondering if there is a link?? I appreciate that CAD is a totally different disease to the missed heart beats and my Cor triatriatum, but I think there is a connection. I have few of the risk factors for a heart attack. My wife has persuaded me to contact GUCH for a consultation and I'm pleased to say they will see me in May. Any thoughts would be much appreciated. Sorry for the long post! Daz
Cor triatriatum 1975
Heart arrythmias 2009, undiagnosed
Heart attack - RCA two stents 1.2.11
Heart attack - LAD treated medically 19.3.11
Darrenh
 
Posts: 2
Joined: Thu Apr 14, 2011 6:42 pm
Location: Medway

Postby elizabeth » Fri Apr 15, 2011 5:19 pm

Hi, Daz

First off - welcome! :D

You're in the right place. I am sorry that you have had such a nasty time. Seeing the GUCH consultant (in London?) is a good idea as they are experienced in dealing with the long-term follow-up of people like us - including how things like rhythm problems can start years after surgery.

These days, congenital patients aren't routinely discharged for many conditions and are monitored on an ongoing basis, but there is a lot to be done to "catch" the ones who were discharged. All too often it happens only when - like you - they become ill in later years.

I have a different condition and (fortunately) haven't had coronary problems - but I think the sense of worry and dread about the future is a universal one when we have times when the heart condition gets in the way of living life in the way we want to. I am not sure I have much in the way of words of wisdom - except to say that it's perfectly normal, and pretty much everyone reading your post will have been there and know exactly where you are coming from.

I hope you keep well until your May appointment and best of luck!
TGA - 1976, Mustard 1977 & baffle repair 1984.
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elizabeth
 
Posts: 1135
Joined: Fri Apr 29, 2005 10:17 am
Location: Oxford

Postby Darrenh » Sat Apr 16, 2011 6:47 pm

Thank you for your reply, and I appreciate your kind words. I am going to the London Heart hospital, and I have John to thank for that after he responded by phone to an email I sent him. He has been really helpful. Thank you once again
Cor triatriatum 1975
Heart arrythmias 2009, undiagnosed
Heart attack - RCA two stents 1.2.11
Heart attack - LAD treated medically 19.3.11
Darrenh
 
Posts: 2
Joined: Thu Apr 14, 2011 6:42 pm
Location: Medway


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