I had the Exostent operation in June 2013 when I was 18, and wrote this only a couple of months afterwards. I had been aware that I had Marfan Syndrome as I was tested at a very early age, because my father was diagnosed with Marfans and had a heart valve replacement at the age of 40.
I have been on prescription beta blockers since I was 10 years old but they never really controlled my condition, by the time I was 18 my aorta had enlarged to 45mm, an increase of 4mm from the previous year.
From the age of 9 to 18 I had been under the care of Dr Rosenthall, and was transferred to the care of Dr Chung at St Thomas’ hospital and after a short time I received an appointment to see Mr Austin who performed my operation.
On the morning of the operation I was given a pre-med to cause drowsiness and in the afternoon during the actual operation a general anaesthetic to fully put me to sleep. I woke up in intensive care the next day, later I was moved to the high dependency unit and finally was moved to the Doulton ward where I spent most of my stay at St Thomas’. It was only eight days after the operation before I was allowed to leave, I suffered only a small amount of discomfort and stopped needing painkillers after the first week at home.
For several days after the operation I found that I wanted to eat little or no food but was urged by the doctors to drink large amounts of liquids to prevent dehydration. Another thing I found was that I had very little strength in my arms finding it difficult to pick up objects, even such as cutlery, for the first day or two and heavier things for some time a fterwards but my strength was completely returned within a little over a month and a half.
A week after I had returned home Tal Golesworthy called to inquire about my recovery which was going well and asked about my thoughts on my operation being recorded and shown on The One Show.