Jonathan Upton

My name is Jonathan and I live in Great Britain. I was born in 1967 with complex congenital heart defects affecting my aorta. My heart defects are known as: Coarctation of Aorta (which is narrowing to the main artery from the heart) and a Bi-cuspid Aortic Valve (two-leaflet valve instead of the usual three), also a small Aortic Arch. My CHD (Congenital Heart Disease) was not diagnosed at birth. During my childhood I was healthy and active. My parents had no reason to suspect that there was anything amiss with my heart. My heart defects were diagnosed at age 16 when I became symptomatic. Being told I had problems with my heart came as a tremendous shock to my parents and me. I have found it all very hard to come to terms with.

To date I have undergone 4 major heart surgeries (3 closed and 1 open-heart). The first two surgeries were performed when I was 17 to repair the Coarctation. After these operations, I was told that I would be fine and not need further surgery. I was followed-up at 6 monthly intervals with a color-flow Doppler echo. However, during early 1998 I became symptomatic once again. I noticed I had become incredibly tired and breathless on exertion. I was also experiencing some unpleasant dizzy spells. One day I felt so very unwell that I went straight to the ER of my local hospital and was admitted straight to cardiac care. The doctors discovered my aortic valve was severely leaky. I was transferred to London the next day where my Cardiologist performed a cardiac catheter. The news was very bad. Not only was my bicuspid valve now severely leaky, I also had two huge aortic aneurysms (one each side of the aortic arch). My Left Ventricle was also very dilated. In October 1998 at the age of 30 I underwent open-heart surgery to replace my aortic valve and ascending aorta with a Carbomedics bi-leaflet mechanical valve and Dacron conduit. The surgery took a lot longer than expected, but I came through well and made a full recovery. Two weeks post operative I went into Atrial Fibrillation, this was treated with Amiodorone.

In February 1999, I underwent the biggest and most serious heart surgery of my life. This surgery was to resect or repair the aortic aneurysm in my upper descending aorta, which had formed at the site of my first heart surgery in 1985. The heart surgeon who performed my aortic valve + root replacement would not agree to do the surgery. The surgery carried an extremely high risk of mortality and possible paraplegia. However, without the surgery I had no future. I was fortunate to find a heart surgeon who has experience with this procedure and is also one of the greatest heart surgeons in the world, having worked with Dr. Denton Cooley at the Texas Heart Institute and Donald Ross at the National Heart Hospital in London. My surgeon was Prof. Sir Magdi Yacoub. Prof. Yacoub is British Heart Foundation Chair holder of Cardiothoracic Surgery and is World renowned for his pioneering heart/lung transplant work at Harefield Hospital, London. Despite all the technical difficulties of redo heart surgery and so soon after my valve replacement, Prof. Yacoub and his team carried out the surgery and saved my life. February 2001 will be the 2nd anniversary of the surgery and I will always be thankful for the skill of Prof. Yacoub.

My heart problems are always a concern for me, but the support of my parents and friends helps me stay positive. I have come to appreciate more than ever the skills and dedication of the heart surgeons, cardiologists and other medical personnel who care for me. I am also grateful to the British Heart Foundation and GUCH (Grown Up Congenital Hearts) for all their support and encouragement.

My message to anyone with heart problems would be don't give up on yourself - live every day to full and try not to be complacent about life's small pleasures.

I am very pleased to have been told about this website. I have made some email buddies already and look forward to chatting with many more of you. If you would like to find out more about me, my job, interests and the full story on my heart problems you might like to visit my website at: http://www.braveheart.eurobell.co.uk

I am always happy to email / chat and meet with anyone who has a heart problem. Talking and sharing experiences I believe is one of the best ways of facing and dealing with this. So if you want to chat, just email me and I promise to reply.

Peace - Jonathan