My whole life I was always a bit different from my friends and at the age of thirty I finally found out why. It was on a routine visit to my GP about a possible broken finger that he commented on the length of my fingers and suggested a trip to hospital to measure my aorta and test for Marfan Syndrome. They confirmed an aortic diameter of 48mm and suddenly all the tests started.
It was confirmed by a skin biopsy that I did indeed have Marfans. They put me on Beta Blockers and for the next 8 years my aorta did not change size.
My way of dealing with it through this period was in fact to ignore it. I still felt totally healthy and apart from not lifting heavy weights I pushed it well to the back of my mind.
In 2008 Dr Chambers at St Thomas hospital told me in no uncertain terms that one day I would have to have an operation on my aorta, no question. He advised me of the new technique developed by Mr Golesworthy’s team and Professor Pepper and advised a meeting with the Professor at the Royal Brompton. Professor Pepper re-iterated that I would have to have an operation one day and that it would be very sensible to have it done while I was young and healthy and before it becomes an emergency procedure. This is when the full gravity of Marfans finally hit home. A heart operation seemed like a huge deal to me but I also knew that it had to be done. Having said that, I still did a very good job of putting it to the back of my mind until about one day before the operation.
It was the night before and I had just said goodbye to my wife at the Royal Brompton hospital. I suddenly realised that tomorrow I was having a heart operation and I got a strange feeling of anxiety, loneliness, fear and panic all rolled into one.
I’m not much of a religious person but I must say I found that a little quiet spell in the hospital chapel helped to ease my mind and quieten my worries, and yes, I said a little prayer.
The operation itself was not at all as bad as might be expected. I remember my wife coming into the recovery room just after the operation and bursting into tears and I couldn’t understand why she was so upset, I re-assured her that I was absolutely fine and told her that I had already had two tubs of ice-cream (apparently when they asked me if there was anything I wanted that’s what I said).
I was very happy chatting to the nurses and in no way uncomfortable at all.
I now know looking back at what a great job the Morphine was doing in those first few days!
They warned me that I might get a bit emotional in hospital but I didn’t quite believe it. The day after they took me off the Morphine I hit a bit of a low and the trigger was not my own self pity but just seeing how some of the older patients were suffering. I, in comparison, seemed totally healthy and fine. It upset me that I would soon be out and at home and they would not.
As far as the rest of my time in hospital, there were a few uncomfortable moments but nothing too bad and certainly no long lingering pain.
The nurses were absolutely brilliant and I have nothing but total respect for their kindness, professionalism and hard work, they really are the salt of the earth (and paid so little).
I was amazed at how quickly I was out of bed and wandering round the wards. I was privileged to get a visit from Tal whilst in hospital, a really nice thing for him to do. He kindly re-assured me about how well I looked (not sure if I believed him), but it really helped to hear from the person who actually developed the procedure and who had been the first to have the operation.
It is now 6 weeks since the op and the only thing that has taken a bit of time is getting a good nights sleep. I still have a few minor aches and pains but it is really noticeable week by week how much things are improving. Apart from that I feel totally well and am going for nice long walks every day.
I want to thank all the nurses and doctors at The Royal Brompton who did such a great job getting me back on my feet.
I can’t express in word’s how grateful I am to Professor Pepper, Mr Tal Golesworthy and team. All I can say is that we are lucky to have people so dedicated, innovative and industrious as to offer people like me hope for the future.