What happens next?

[Octavia80]

Hi Everyone, I have recently been diagnosed with an ASD after ending up in hospital twice with AF symptoms and having all the tests (echocardiogram, Chest X-ray, cardiac CT scan and TOE). This has all taken 6 months and have just had the TOE where I could see the hole in my heart on the screen and was told 'we can't leave you like this'. I'm not sure what happens next. Will I get another appointment with my cardiologist to get the final diagnosis? Will he refer me straight to a specialist cardiac unit? What questions should I ask? How do I find out what the waiting list is like? Drugs are suppressing symptoms and I feel really well in myself and home/work/family is good at the moment so I am scared I will end up feeling worse after surgery (likely to be open heart). All advice welcome.

[skid112 Heart Star]

Hi there, any invasive surgery is likely to make you feel worse initially but when they repair your heart the real healing will begin

[Octavia80 in reply to skid112]

Thanks, I suppose I have to be realistic over what will happen.

[Heather1957]

I don't know what happens next but can tell you (honestly) that yes you will feel worse after surgery but hopefully that is short lived and eventually you will feel better than ever but the alternative (well for me) was death earlier than it should be. I am 6 weeks down the line after a bypass and often questioned myself as to whether I did the right thing especially as my symptoms before surgery were relatively minor. The times I question my decision are getting less and less.

I believe the 'what next' will vary from place to place. You can contact your GP who should have received an update from the cardiologist and they can tell you if a further appointment will be made or contact the cardiologist's secretary directly as they tend to be privy to lots of info.

When you are first diagnosed, from experience I know you will have lots of questions and concerns it is only natural. I hope people on here can answer your questions but as I said I think things vary from health authority to health authority.

What I can tell you that any surgery involving the heart is major so be prepared for initially needing a lot of support but hopefully long term it will be the best decision you make.

[Octavia80]

Thank you, I will contact my GP to find out more as a starting point, I didn't realise she would be informed.

[Midgeymoo17]

just to say if you require repair it does not need necessarily to be at an ACHD specialist centres. many cardiology departments, particularly at achd outreach clinics, have very good interventional lists that do percutaneous repairs of ASD's better than many of the achd specialist centres. however if your require an open heart then you should be seen at an achd specialist centre.

the waiting time will depend on the procedure but many or the congenital heart specialist centres have around a 6 month waiting list for repair by open heart and then the lists are complete chaos. [on one at the moment]

[Octavia80]

That doesn't sound good but at least I can be realistic over how long things may take. Hope you get your op soon. Thanks for the info.

[Midgeymoo17 in reply to Octavia80]

thanks. i have a provisional date of this coming thursday - 12 months after initial scan

[Hidden]

Hi there - looks like you have a lot going on at the moment so it's no wonder you're feeling a little overwhelmed. As far as surgery goes, repairing an ASD is usually quite straightforward and the improvement after you've recovered from the surgery is very positive for most people.

Having an ASD can put pressure on your heart and cause abnormal heart rhythms, which in turn can cause all sorts of symptoms like palpitations, shortness of breath and a lack of energy. The aim of a repair surgery is to help combat all these issues. The fact that the drugs are suppressing your symptoms is a good thing as that's exactly what we want to achieve to help maintain your quality of life.

We have a couple of articles from Heart Matters magazine about questions to ask your doctor. They're not all specific but there are some good general ones to help you on your way

bhf.org.uk/heart-matters-ma...

bhf.org.uk/heart-matters-ma...

Hope this helps.

Take care,

Chris

[Octavia80]

Thank you, these are really useful.

[Patra79]

Hi.

I don't know if you're any further along with finding answers than your original post

I'm 11 days post op after my ASD closure.

I had a traditional surgical method rather than catheter.

I'm not saying I'd like to do it again but it really wasn't as bad as I expected.

I was discharged after 6 days. Every day I'm better and better. I was told heart failure was a chance in 5 years in my case if I wasn't treated. So it was a bit of a no brainer.

Any questions at all you might have about what to expect just ask

Patra79 xxx