Meet the patients: Jonathan Freeman

"Jonathan Upton in front of Sydney Opera HouseUnlike many people who are born with congenital heart disease (CHD), my condition was not diagnosed until I collapsed one day whilst out with friends. I was 16 at the time and had been feeling unwell for several months and tired most of the time. Each day when I got home from school I would fall asleep on the sofa. My parents just thought I was being a lazy teenager. It wasn’t until I suffered a black-out whilst out with friends and was admitted to my local hospital that a heart murmur was heard.

"After many tests it was found I had been born with complex coarctation of aorta (CoA), a narrowing in the main artery from the heart. I also had a bicuspid aortic valve, which means the valve only had two leaflets instead of the usual three. I had two heart surgeries at the age of 17 to repair my aorta. In 1998 I underwent further open-heart surgery to replace my aortic valve with an artificial valve, because the native valve had become severely leaky. In 1999, the famous heart surgeon, Professor Sir Magdi Yacoub, repaired a large aneurysm in my aorta, which had developed at the site of my orginal surgery.

"As a teenager I used to be quite self-consious of my operation scars. When I went swimming if anyone asked about my scars I would joke that I had a wrestle with Jaws. Over the years I’ve come to accept the scars as being part of me and remember one of my doctors telling me to view them as a ‘badge of courage’. That’s exactly what I do now. I’m alive because of those surgeries and will be forever grateful to those great doctors and surgeons involved in saving my life. One time after my last surgery I saw a guy wearing a ‘No Fear’ tee-shirt with the slogan ‘scars, tattoos of the brave’ printed on the back. I thought what a fitting slogan for us who were born with a CHD.

"I try very hard not to allow my condition to rule my life. Since leaving school I have worked in IT as a technical writer for various large companies in the field of aviation. My job has given me many opportunites to travel and this gave me the confidence to achieve my dream of going out to meet my CHD friend, Rowan, in Brisbane, Australia. Outside of work I have many hobbies and interests.

"Probably my greatest interest is aviation. This summer I’m planning to go gliding with some friends, which I’m really excited about. I also own a radio-controlled aircraft which I often fly up on the Downs above Worthing, near to where I live. Another interest of mine is digital photography and travel.

Toony, Jonathan and Rowan"Whilst I was in Australia I met and have become very good friends with Michael Toon, who like Rowan was also born with transposition of the great arteries (TGA) and operated on as baby. Amazingly, Toony went on to become a well known athlete and was cox for the Australian rowing team at the Athens Olympics in 2004. Toony let me hold his bronze medal. It was a truly great experience meeting him and others with CHD in Australia. His positive attitude to life has given me so much inspiration. Now he’s at medical school studying to be a doctor and intends to become a congenital cardiologist one day.

"Being on warfarin, my travels have been made much easier thanks to my CoaguChek, which allows me to monitor my own international normalised ratio (INR) levels. Even 12,000 miles from home I was able to get a quick, easy and accurate result from my machine and any significant changes in my INR could be phoned through to my local hospital in the UK who could advise me on what dose to take.

"Being told as a teenager that I had a heart condition was a huge blow and took some time to get my head around. Often I felt like the only one with the condition, but I soon learnt that there are loads of us around who have CHD. I realised that many of us share very similar experiences and that interchange really is helpful and positive. By sharing our experiences we learn so much from each other.

"It is this sharing of knowledge that makes Southampton Hospital’s congenital cardiac centre such a great centre. I’ve only been cared for by the team at Southampton since 2007, having moved from a London hospital. Southampton is far easier for me to access from where I live on the south coast. To be honest, at first I felt a bit worried about moving to a different hospital. Having to get to know new cardiologists, nurses and technicians all over again seemed a bit daunting and of course them having to get to know me and my condition. However everyone has been so helpful, friendly and supportive. The team are very thorough and  they take the time to explain things. Nothing is too much trouble. Plus we have excellent facilities here at the congenital cardiac centre, Southampton. I’m well aware that some day in the future I will very likely need more heart surgery - I’m just glad that I’m in excellent hands."