aberrant right coronary artery

[Sunshine_24]

Hi all. I found at age 26 after years of different symptoms that I have a congenital heart defect. I have an anomalous / aberrant right coronary after with origin from the left coronary sinus which then runs an anomalous course between the aorta and pulmonary trunk. I have been told I will need to have open heart surgery however the procedure is not yet confirmed (unroofing, re-implantation, bypass). It has been a real shock and a lot to process. Would love to hear other people’s stories and talk to others who have a similar defect to mine. Any tips on how to cope with the anxiety that comes with a diagnosis like this would also really help me ♥️

[Butterfly65]

Hello Sunshine _24 I'm so sorry to hear that you've recently been diagnosed with a congenital heart defect that will require OHS.

There are many on this forum who have experienced OHS, who will come along soon & hopefully be able to give you sound advice & emotional support that will help to calm the shock & anxiety that you're experiencing.

I've tagged LadyZ13 because I know that she has also had OHS for a congenital heart defect in her 30's.

[Sunshine_24 in reply to Butterfly65]

Thank you so much for the kind message Butterfly65. I really appreciate it ♥️ yes hoping hearing peoples OHS stories will ease my mind and prepare me for what’s to come. I have to keep reminding myself that I am not alone! Its incredible what surgeons can do for so many with these cases.

I will try to get in contact with LadyZ13 thanks again ☺️

[12GT]

hello Sunshine_24

I know exactly what you’re going through as I found out at the age of 58 that I have the same condition.

My heart troubles started last March when was taken into hospital with a BP of 240/130. It eventually came down to around normal a few hours later but it was very distressing and they don’t know what raised it to that level. Initial diagnosis was it wasn’t a HA, but they couldn’t tell me what caused it.

Over the following months I had many trips to A&E and GP due to the anxiety of it all, I couldn’t calm myself down whenever I felt discomfort in my chest.

One of the scans on my heart discovered the anomalous course of the RCA, but my cardiologist says it’s an incidental finding and wasn’t the cause of my heart ‘event’. He didn’t recommend OHS (maybe my age?) but did recommend i take it easy with exercise and keep my BP in check (8mg candesartan).

I was a keen cyclist, gym goer and kept fit all my life and I’d lived with it (not knowing)up until then with no issues whatsoever. Now I know though, my mindset is a bit different, it’s always there , thinking about it and the experience of 230/130 BP is something I never want to feel again. I still exercise, moderately now.

Can I ask how you found out, did you have any symptoms?

[Sunshine_24 in reply to 12GT]

Hi 12GT. Thank you for sharing your story with me. That’s very scary and even more so when the doctors won’t investigate further considering you are still feeling discomfort. You are so right, once you know you have a defect the anxiety is dreadful, every twinge or ache in the area causes fear. I have for as long as I remember always felt uncomfortable when exercising - I thought it was normal to have palpitations, breathlessness, dizzy spells, fatigue, constant yawning and blurred vision and a heart rate that would go to 200 and beyond. I didn’t ever know any different. I assumed I was unfit even though I would be going to the gym 3/4 times a week. I told a friend who previously had supraventricular tachycardia randomly that my heart rate was that high on my Apple Watch and I have chest pain and blurry vision and she told me that is not normal and I should see a doctor. It was then I went reluctantly to get some tests. After undertaking a treadmill test it came out positive and then I went on to have a CT scan which revealed my defect and suddenly all the symptoms made sense as I have restricted blow flow even at rest never mind when exercising. I am very lucky to now know as I was told most people find out when it’s too late (mainly those who are athletes). Also, where my artery is squeezed (effacement).. calcification will eventually build up and cause a block and then of course I’ll have a HA or stroke. On that basis and due to the treadmill test result is why I believe I am being offered open heart surgery. I have learnt a lot from research and it seems those who are asymptomatic will not be offered surgery or if you don’t have a clear test to show the artery is the cause of your symptom the same. Which is shocking as I have spoken to some people who have terrible symptoms but not catching them by tests is preventing them from having surgery. I have also learnt that I should push for reimplantation of the artery only and refuse CABG due to the heightened risks of heart failure and competitive flow. So this is something to think about if they do offer you surgery at any point. Good that you are still exercising moderately it’s important and I try to do the same. Just feels awful to restrict yourself when you have enjoyed keeping fit / doing sports. I have found walking has really helped me and aim for 10,000 steps a day and relieves chest tightness. I really hope you never have to experience that again either. Hope this all helps in some way and I would be happy to discuss any more with you 🙂 stay strong

[Butterfly65 in reply to Sunshine_24]

Apologies, I forgot to add the @ to LadyZ13 but have just edited my error in my initial comment.

Just to add, although I've not been diagnosed with a congenital heart condition I have always struggled with exercise & breathlessness, plus I've had puffy ankles since the age of seven so I do wonder if that's been overlooked.

I've had a Cardiac MRI but images were blurred due to my having Afib so waiting for a cardioversion & CT scan.

It could have been before age 7 but that's the age that I remember becoming aware that my ankles looked different to my sisters & my friends & when I stopped enjoying running races.