My CHD was misdiagnosed for anxiety AMA

[MyWildOliveGoose]

Just like the title says really.

I was born with a very rare congenital heart disease that was completely missed all through childhood. When I became an adult and started displaying progressive symptoms my GP kept telling me it was just anxiety. I finally got a diagnosis and have just recovered from open heart surgery to completely reconstruct my heart.

Ask me anything.

I gave my OH a vitamin E capsule mixed into sudocrem, much cheaper than bio oil and works the same. His scar is very indistinct now but it was 15 years ago.

I hope you'll learn to love it as life saving and I hope your ribs have stopped cracking and creaking!

They are young adults from 21-28. CRY screening would have been a godsend! One DD is an HCP and even she was dismissed until she took her own ECG trace. It’s very, very frightening how easily young people are dismissed despite repeat GP visits and family history.

So glad you had the sense and confidence to know it wasn’t anxiety and that you allowed your intuition to stop you taking the meds.

@HelpDeirdregosh you look a bit stupid now don’t you

Thank you, I shall remember that. My ribs were all good, most of my pain was in my back/spine. It was just awful. Has eased now though x

It really is. Almost as if congenital heart disease isn’t recognised by GPs in young people - regardless of present symptoms. I’m glad they got the support they need, despite it taking far too long to be heard. I hope they learnt to be confident in their advocacy for themselves. 🫶🏼✨

Yes.. I am glad too.. one of my most prominent memories of the whole ordeal is sitting in front of a dr telling me I was anxious and having a panic attack and saying “the only thing I’m anxious about, is that something is being missed here… and the only reason I’m panicking is because you’re not listening to me” and that really was the corner being turnt.

Another recommendation, I don't know if your daughter used the two finger version or the Holter version with two electrodes on the chest, but we had to take ECGs using the home Holter (about £300). to finally force the cardiologists to fit a pacemaker to my husband. His sister has had to do the same to get hers to agree to an abiation.

It's a really marvellous little device and the analysis software it comes with gives you a complete analysis.

I really don’t know which she used, I’ll ask her. She had an episode at work (paramedic) so did the ecg and it was because she was then diagnosed that anybody took my other DDs seriously.
A pacemaker or ablation are possibilities. She’s managed with beta blockers currently and monitored regularly.

The paramedic may have had a bigger machine but if she wants to do her own in future I'd recommended the £300 one if she has the money. DH was on beta blockers for years. Sister on huge doses to stop fibrillation. I don't really understand the resistance to fitting a pacemaker, there are hardly any downsides. It's changed his life, but he did need an ablation too. Neither procedure was very stressful. He already has a mechanical aortic valve replacement, hence the zipper.

I hope everyone in your family stays well.

Have your GP's acknowledged or apologised to you for dimissing your symptoms? Have they learned from your experience?

Not really.. they requested a meeting with me, and basically said I became a “nightmare” patient because I was a “regular” e-consulter. That they don’t expect 35 year olds to display true cardiac symptoms and that maybe this will help them do better for the next person in my position but that they would still consider the symptoms I displayed as anxiety 9 times out of 10 because young people having heart conditions is rare.

Based on that alone I would absolutely sue.

You should at least explore what your legal options are with a specialist. Good to hear you're recovering well.

On the basis alone that they have a 'nightmare', regular 'econsulter' they should have sought to look outside the box and sought more opinions and they should review their 'rule out' approach. They should not dismiss everything because 'it's rare' - how are they to know they don't have that rare case in front of them? If everyone decided nothing rare was going to walk through their surgery door then anyone with uncommon symptoms would be doomed.

I’m so sorry for what you’ve been through op, been reading your thread with interest. Felt compelled to comment on this, I think those are some shocking comments from your GP. Not apologising but also still trying to make out you were being a ‘problem patient’. I get really cross when doctors dismiss symptoms because of age (or being a woman). Surely it is better to be sure and rule things out, some conditions may be rare when younger, but rare doesn’t mean it’s impossible. How do they know the person sat in front of them isn’t one of those rare cases without doing the relevant tests?

In your case the anxiety medication could have actually made your condition worse, they are lucky you ended up not taking it as it wouldn’t have looked good on them.

I don’t have any questions just wanted to offer support and wish you the best for the future.