ASD diagnosis

[Yk96]

Hi, not sure what to start with, but I suppose going to the hospital expecting just to be told its a heart murmur, to being actually told you have a 'hole in your heart' has been a shock to the system.I'm just wondering, how long from initial diagnosis from a cardiologist to seeing a specialist, would take? Is it a long wait? And what can I expect, going forward?

I'm reading and reading and just scaring myself not for the surgery but more of how bad the hole is going to be. As the cardiologist said it seems quite large.

[Hidden]

Dear Yk96

A warm welcome to your first post on here, a forum that is a collection of support and information.

Please try and not worry { easy to say } you don't present your age and I am to much of a gentleman to ask, but the point is that you have lived this long with a hole in the heart { most are from birth } and have only just began to show symptoms of something wrong.

Quite often, but not always { as your heart team will tell you } theses symptoms are connected to something else and the hole has been found while looking for explanations.

Many on here have had a heart hole closed by various methods so they will be along soon to help you more.

Please take care and welcome once more, we are here to help.

[Silvertail in reply to Hidden]

I have a PFO with ASA (another hole in the heart). It is supposed to close after birth, but in 20-25% of people it doesn't. In fact it is often only discovered in an autopsy. Mine was found in a routine echo for other cardiac problems. I was in my 70s and had had many previous echos. It was explained to me that because of many things, eg position you're lying, expertise of technician etc it is often missed. Apparently it causes a murmur too. No-one has suggested closing mine. If they repair it, usually a catheter with the device is threaded through the groin to place the occluder in the heart. I understand when a flap is seen overlapping each other then it is known as a PFO. When the flap separates crating a clear defect, it is called an ASD.

[Hidden in reply to Silvertail]

Very interesting, I also was a hole in the heart baby and it did close leaving a scar, but this has no reference to the condition of my heart now.

It has never been mentioned except by one of the Cardiologists that was looking at my medical notes { Mum died at 59 with Heart problems } and came across very limited information about it.

Take care

[LadyZ13]

Hello there! I've messaged you as I think we're in a similar boat, and what I would say from my reading is that, at your age, you stand the very best odds of having a completely normal life (including lifespan) once the doctors have addressed it however they think is best.

Did the cardiologist tell you who they were going to refer you on to, and do you have anything in writing? I had a letter from the cardiologist to my GP which cc'd me and the specialist, and I immediately googled him, found his PA and made friends with her on the phone! I checked she had all of my tests to date and kept her in the loop about other things going on - the cardiologist wanted to send me for an MRI and I chased that up a bit; it took a month to get the appointment, and then another month before the specialist consultant appointment. So that's 10 weeks from mysterious collapse and 'your heart has a murmur' to 'this looks like you need OHS'. I expect for others it is longer.

In my experience, while addressing a heart hole is important, it's not rushed through as urgent. A heart hole is fairly common, it may not cause you any problems for a long time; but I know well the pain of waiting for answers.

If the hole is 'bad' (raises hand as proud owner of a big bad hole) then yes, there's surgery to be had. If it's moderate, they should be able to fix non invasively. Until you know either way, you can only control how you respond to that uncertainty. For me, this was holding all the options lightly so as to be prepared, but trying to put it from my mind as much as possible.

I hope that helps a little!