My story so far – Left Ventricular Non-Compaction Cardiomyopathy

Hello. My name is Phoebe and I’m 22 years old. When I was three years old, I was admitted to Great Ormond Street Hospital to have open heart surgery to repair an Atrial Septal Defect (ASD), other wise known as a hole in my heart. Since then I was very healthy and finished school and college without many difficulties. For this reason, I never considered myself to be somebody with a heart condition and didn’t particularly ever think much about my previous surgery, apart from for the scar down my chest which today, is barely noticeable.

When I turned 19, I had my final appointment to be signed off the list for cardiac patient care. However, it didn’t end up that way. I had an MRI scan, just to confirm that everything was alright, and was told that this would be a quick, 20 minute procedure. Instead, I was laying in the MRI scanner for 2 hours and was afterwards diagnosed with Left Ventricular Non-Compaction Cardiomyopathy and a dilated aorta. This was a great shock for myself and my family and I had to suspend my university studies for two years due to the fact that my blood pressure kept dropping so low that I was collapsing all the time and I was getting tired very easily.

Flash forward to today and I now have an internal loop recorder fitted and I’m on medication to keep my blood pressure stable. I am also just about to go into my final year at university which has been a long time coming! I’m looking forward to hopefully meeting other people who also have heart conditions and have perhaps had similar experiences to myself!

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National myheart meeting-16th March,2024

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