Panel Member

Hello – I’m Charley. I’m in my early 20’s and I have Restrictive Cardiomyopathy.

I have always known about my heart not being able to function properly as I was born with a congenital heart defect and had my first operation at six days old. This then led to several more surgeries to try and figure out what was wrong.

Cardiomyopathy was first mentioned at the age of eleven and did not mean that much to me at that time. By this age, my family brought me up as normal as they could with going to the hospital every six months for checkups, I just tried to live a normal life, trying to accept the limitations and limits my condition was giving me. Between the ages of fourteen to seventeen I had two transplant assessments, both ended up with transplant not being needed at that time. Going through the assessment they did lots of the usual tests, e.g., echo cardiogram, ECG, and exercise test. It was a bit of a whirlwind of emotion and anxiety, but I had the support from my family to get us all through it as it was an emotional roller coaster you could say.

As I was getting older and living with cardiomyopathy, I started to take on more of my responsibilities with my condition. That would be learning to take all my tablets every day and realizing when I have over done it, and how the condition affects me.  When I Transition from child to adult found it hard being given all the information about my condition, what helped me with that was my very supportive family, which makes it less daunting. Being introduced to Cardiomyopathy UK has been a huge help as, I got to learn more about restrictive cardiomyopathy by the massive support from the panel members and all the advice at the conferences explaining about different aspects of cardiomyopathy. Which made me more condiment in knowing the condition I have. This led me to take ownership of my heath and learning the good balance of life.

I have had two years on the routine transplant list, but then it was decided the risks did not out way the benefits at that time. When, I came off I just went back to normality getting on with trying to gain that balance lifestyle. I have always known that I would eventually need a transplant, but it is when is the right time. My future pathway is uncertain, I am borderline having to go on transplant list but for now am sticking to my moto “just keep going even if it’s tough!!” being on the panel how given me the confidence in helping others that is going through the same thing and just finding out about they condition we can support them through it.