'One day, I did not feel very well and I noticed that I needed to catch my breath all the time. Because my mother has heart problems herself, she was concerned and advised me to visit our GP. The GP could not find anything much and referred me to a nearby hospital, where they made a heart trace and ultrasound and sent me home. They prescribed drugs for me and told me that I would be fine because I was still so young.

That was five years ago when I was seventeen. But I wasn't fine - and continued to deteriorate on a daily basis. I could hardly climb the stairs and I fell during a walk, and after that I could only sleep. I vaguely remember being taken to the UMC Utrecht by ambulance and that they connected me to a heart monitor. Just one hour later there was a cardiologist at my bedside after which they immediately made a chest X-ray without me even needing to leave my bed. I was diagnosed with dilated cardiomyopathy and had surgery within three days.

I vaguely remember that they talked about 'surgery' and 'pump' when I was lying there. I was given a ventricular assistance device. My world collapsed from under me, I was scared, insecure, in the middle of puberty and found it hard to accept.

When my LVAD needed replacement two years later, I was extremely anxious. The Nurse Practitioner from the LVAD Team sat next to me in the OR. She sang to me to make me feel better ... it was beautiful.

I had an LVAD for a total of four years and now have a donor heart. The heart transplantation was done by the same surgeon as the one who implanted the LVADs. He took the time again to come and find out how I was and he reassured me in the OR before the operation. I was allowed to get out of bed three days after the surgery and was discharged from the hospital twenty days later. Everything is going well now - I feel well and I have started swimming again.

I am also participating in a genetic study that is being performed at this hospital. Do you know what they found? My father has the gene for dilated cardiomyopathy, but does not have the disease - and my mother has heart failure: I inherited this combination. It is nice that this study has allowed me to find out more about where my disorder has come from.

I still visit the UMCU for follow-up every two months, but I do not mind those visits. Everyone knows me and my parents so well. It kind of feels like coming home, which may sound slightly strange because that's not what you're supposed to say at my age. Everyone here is so warm and full of understanding, including the heart surgeon, the rest of the LVAD Team and the nurses; I am a true VIP on the ward! I am always welcome to call, and get the necessary attention and answers to my questions. I am taken seriously here, and I know that I am in safe hands.'