In 2019, my Dad passed away suddenly and unexpectedly from a cardiac arrest although he had no known heart condition. He was the kindest person who would do anything for anyone and was always there for me. Losing my Dad was a very emotionally painful experience but he will forever live on in my head and my heart. A couple of years after his passing in 2021, I experienced my first collapse suddenly in my first week of college. However, Doctors at the time said that the cause of this was age related and the grief of losing my Dad. After this episode, I continued to collapse on average once every six months until last year when I had my cardiac arrest and was air lifted to Basildon Hospital. The week spent in hospital was one of the most challenging of my life due to the unknown. My life went from being active 5 days a week playing football and doing kickboxing to, without warning, laying in a hospital bed losing hope and not knowing what my future held, or if I even had a future.
Whilst in hospital, I was diagnosed with Long QT Syndrome, a rare genetic heart condition that I had never heard of. Very few people are affected by my type of Long QT Syndrome and like the minority of people who also suffer with this, I have learned to adapt and live with this condition, making the most of the path that I have been given. We have learnt that this genetic variant has affected many generations in my family with my Dad, Nan, great aunt, and great nan all passing away in their 30s and 40s which was, at the time of their passings, described as a cardiac arrest with no known cause.
After my diagnosis, I had surgery to have an ICD implanted, which has been life-changing for me. Knowing that the device will intervene and restore my heart’s rhythm if it detects a dangerous arrythmia has given me more confidence. It provides reassurance that, should my medication fail to manage my heart rhythm, the ICD is there to protect me and potentially save my life in the future. Although I was very insecure about my scar and the outline of the ICD being on show, I have recently come to love and appreciate the imperfection as it makes me who I am and shows what I have overcome.
Due to the lack of oxygen during my cardiac arrest I have little memory of my time in hospital which was frightening for my family as I did not even recognise my own mum, and sometimes I still suffer with some short term memory issues which can be very frustrating for me as I used to have a photographic memory and would go through exams with no difficulty remembering what I had learnt weeks prior.
In hospital I was given a blood test for a genetic test to confirm the type of Long QT syndrome that I have which is the KCNH2 variant. This genetic testing has been extremely important to my family as it has meant that my siblings have had confirmation on whether they have the gene or not, resulting in, if they did have this gene, early diagnosis and medication so that they do not need to suffer a cardiac arrest to begin the process of controlling this condition. I am very grateful to this testing as it has helped save the lives of my family and future family members.
I would like to take this time to thank Dr Dungu and Amy, a specialist cardiac nurse, as they have been extremely helpful in my recovery. They have given me the hope that I needed to get through this very challenging time.
After a difficult journey in my recovery, I can now say that I am slowly returning back to normal and couldn’t be happier with my life, I am currently going to university to study Primary Education with my end goal being a primary school teacher in the future and have recently started returning to exercise. This second chance at life has made me appreciate how delicate life really is and how you need to make every second count. Making sure that instead of putting things off and telling myself ‘ill do that tomorrow’, I do it in the moment because tomorrow isn’t promised.
