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Being Brothers, Sharing Scars

This is the story of two brothers: Anthony and me, Kieran. We both enjoy sports and fitness. And we have something else in common - a defective gene that causes the proteins that make up the aorta to be weaker than they should be, making it susceptible to stretching and splitting. As a result, we've both been through the ups and downs of life with a heart defect, including surgery. This is our story so far.

Anthony had a Patent Ductus Arteriosus (PDA) at birth and was operated on at the Bristol Royal Infirmary when he was two months old. He was well until he reached the age of 27, when he began to have aches in his side. It was discovered that his aorta had stretched to 70mm in diameter - almost three times the average size of an aorta (25mm diameter). Anthony's was one of the widest aortas the doctors had seen in Bristol. He had emergency surgery to repair the aorta and to replace his aortic valve, which had been found to be bicuspid. He remembers being very shocked and confused about what was happening to him, particularly as he didn't have time to mentally prepare for the surgery or make any arrangements. Dad even had to move Anthony's car and get a doctor's note to let him off a parking ticket as he didn't have a chance to move it before his operation!

Anthony spent five weeks in hospital, and was glad to get out as he got very bored! A few months later, he completed his final university exams and started cardiac rehabilitation. After five months post-operation, he was back to the levels of fitness he had been before his surgery.

Unfortunately, nine months after the surgery he suffered a stroke, which was caused by an atrial septal defect. This was plugged using keyhole surgery but since then he has suffered several minor strokes and is being carefully monitored whilst medical staff decide what to do next. However, he still has good fitness levels and has been able to complete 10km runs and the London to Brighton cycle ride.

After our mother died suddenly from an aneurysm in February 2012, I thought it would be sensible to get myself checked out, especially given Anthony's history. I had my appointment at the Bristol Heart Institute and they discovered that my aorta had stretched to 49mm. Fortunately, this had not affected my valve. I was shocked that I had the same condition as my brother. Neither my mother nor I had any symptoms with our conditions. Given our family history I was advised to have surgery as soon as possible, so in July 2012 I had my aortic root replaced and a hole in my heart closed.

The four months leading up to the surgery were definitely the worst of my life. I knew what having surgery meant, as I had already seen my brother go through it. I was extremely anxious, and ended up in A&E twice because of panic attacks. Thankfully, the surgery went well, and I was up and out of the hospital five days later. I was well looked after and the whole experience was nowhere near as horrific as I'd feared it would be.

I started cardiac rehab ten weeks after surgery and six months later I was back to full fitness and able to push myself to the same cardiovascular limits as before the surgery. I have been given some great advice from my physiotherapist regarding heart rate (beats per minute) limits, and I now wear a heart rate monitor to help me keep within these. I've also made some changes to my diet, following a talk from a dietitian that was part of the rehab programme. After the talk I went straight out and bought some new snacks; dried fruit, mixed nuts, and tins of mackerel and sardines!

We are both very grateful to all the medical staff who have helped us and our family and friends who have supported us through some difficult times.

Written by Claire Choong Told by Kieran and Anthony Bradley

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