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Jonathan’s Story

Jonathan was born with Aortic Stenosis and Patent Ductus and a hole in the heart, and has subsequently had 5 heart operations.

When I was six weeks old I had a balloon angioplasty and was given a 50/50 chance that I would survive. I came through the procedure and was told that I was the first baby to survive the operation in the North East. At ten weeks, old I had an operation to close up the Patent Ductus, the hole in the heart closed spontaneously. When I was nine I had a Ross procedure; This is where the defective aortic valve is removed and the pulmonary valve is placed in the aortic position and a cadaver valve is placed in the pulmonary position. The operation was a success and lasted until I was 15 years old. Corrective surgery was then planned for the pulmonary valve in the aortic position as it had bulged under the increased pressure. With the operation complete, I finally made it off bypass and into intensive care. Things were not straightforward though and due to excessive bleeding, it was only hours before heading back to theatre to correct.

This fix was supposed to last 2 years and unfortunately only lasted 6 weeks. I was on holiday in Scotland and felt very unwell and unbeknown to me or my family, I was in heart failure. After seeing a local doctor, we rushed back to the hospital in England and within 48 hours I was back in theatre having a mechanical valve fitted in place of my aortic valve. Since then I have had two bouts of infective endocarditis which has totalled a staggering 18 months’ hospital and recovery time.

The onset of first infection was very sudden; I was playing ice hockey and suddenly body shakes and shivers hit me mid-game and I had to leave the ice. I thought I only had a cold and had a skiing trip booked the following week and so thinking nothing of it, I went. This was to be a big mistake and my condition got much worse with almost constant cold sweats and rigor for the duration of the trip and no skiing!! On returning to the UK, I was admitted to hospital and from blood cultures I was diagnosed with infective endocarditis and treated with intravenous antibiotics. Two years later and almost as suddenly, I started to get cold sweats and body shivers again and due to my previous experience, I was admitted to hospital and was again diagnosed with infective endocarditis. I spent the best part of 6 months in hospital receiving treatment and a following 6 months recovering from this.

 

Jonathan needs another operation and in light of his upcoming surgery he and his twin brother set up, SIX TIMES OPEN; a national campaign aiming to raise £100,000 and awareness of the BHF. The 12-month campaign intimately follows Jonathan and his twin brother David, as they prepare mentally and physically for the roller-coaster of a sixth heart operation. Jonathan is also hosting Wear it. Beat it. events on the 9th June.