Alex Milton

Age: 38

I come from a large family of 6. I have three brothers and two sisters. My family was unaware of Marfans Syndrome until we lost our brother, Mark, in April 1996 to the undiagnosed syndrome.

Doctors suggested to my mum that all of us children should be checked out and in doing so Doctors discovered that I had a dilated aortic root in November 1996.

I was referred to St Thomas’ Hospital for echoes every six months with Dr Chambers and then in October 2008, Dr Chambers referred me to the Royal Brompton to see Prof. Pepper.

I went to see Prof. Pepper and he suggested that I would be a perfect candidate for the PEARS implant. He arranged my operation for Tuesday 20th January 09. I went in to hospital on Monday the 19th. I was second on the list but because of an emergency admission it got too late and my operation had to be cancelled. I was sent home.

I went back in hospital on Sunday 25th January 09 to have my operation on Monday 26th. I was taken down for the operation at 8am on Monday morning. I woke up at 8.30pm in recovery and was told by Prof. Pepper that they had had problems fitting the PEARS implant because of an unusually placed coronary artery. Prof. Pepper was not happy to continue the operation at that time, so he chose to go for safety and find out more about my arteries.

Prof. Pepper came to see me the next day and said that he wanted me to have an angiogram to get better pictures. I had the angiogram on Thursday 29th January 09, and Prof. Pepper informed me that he was very happy with the results. He came back to see me the next day and told me that he was happy to re-operate but that he needed a replacement PEARS implant and a further date was scheduled for Monday 2nd February 09. Prof. Pepper gave the go ahead to Tal to make a new implant. Tal produced 2 fresh implants just in case! Tal then got the implants back to Prof. Pepper by that weekend ready for my operation on Monday morning.

I woke up on Monday morning and we had had terrible snow that night which caused the operation to be cancelled again!! Prof. Pepper assured me that he would fit me in as soon as possible.

Wednesday night (4th Feb, 09) the Doctors came around and said I was first on the list for Thursday 5th Feb. I got up about 4am on Thursday morning to make sure there had been no more snow! I got in the shower and got ready for my operation. The porter came for me at 8am, so far so good! I didn’t want any more cancellations! I woke up about 13.00 in intensive care and Prof Pepper came to see me and said that the operation went very well and that he was pleased. I was glad that everything had gone ok this time and I was on the mend. I stayed in intensive care overnight and the next day I was moved to the high dependency unit where I stayed for another day. I got up on Saturday morning and started some walking around the wards. The Doctors were very pleased with me and said that if I did well over the weekend I would able to go home on Monday 9th Feb.

I had a good weekend, lots of walking and exercise, Monday morning I was looking forward to going home. I had to have a few more tests and manage the stairs with the physio before being discharged.

I’m now 5 weeks post op and feeling great. I’m waiting to start out-patient Physiotherapy at the Princess Royal Hospital on the 26th March, 09.

I would like to say a big thank you to Professor Pepper, Tal Golesworthy and all of the team on the Princess Alexandra Ward at the Royal Brompton Hospital.

Year of operation: 2009