I am a 51 year old male, married with 3 kids who is currently diagnosed with ascending aortic aneurysm in excess of 5 cm.
I was borne in the UK and in the final term of my first year of college, in 1988, after receiving numerous diagnosis, I underwent surgery on my aortic valve as a result of endocarditis, which had spread too much. Unfortunately, the doctors were unable to save the valve so a metal St Jude’s valve was implanted. However, the spread of endocarditis was so great that a month later I had the mitral valve replaced.
I have enjoyed a normal life since the surgery and while I did have a repair of my mitral valve in the US in 2002 where I now reside, I had led an active life including snowboarding , racket sports , golf and occasional windsurfing.
In 2014, I became aware of my ascending aortic aneurysm, which at the time was around 4.6 cm and is a result of my bicuspid valve. It is common for those born with bicuspid valves to experience an aneurysm. This has been monitored yearly through a CT scan but had slowly grown to around 4.9 cm where it seemed to be stable. However, in August 2019, my yearly CT scan revealed it had grown to 5.3 cm which is where it currently stands.
As a result of the growth, I sought advice and support locally with the non-profit organizations Aortic Bridge and Aortic Hope. While many of the people I have come across have had dissections, there are commonalities in our experience due to open heart surgery. More importantly, given the asymptotic nature of an aneurysm it’s impossible to know if you have one unless you have had an echocardiogram or better still, a CT scan.
It struck me that dissections could be possibly preventable and many lives could be saved as a result of increasing awareness throughout the medical community as well as the general population, whom have had previous generations suffer from sudden unexplained death.
Having the medical community ask the right questions in a timely way can also save lives.
Emotionally, I was a bit of a mess last August when I learned my aneurysm had grown again and made the mistake of scrolling the internet for answers. Thankfully, being able to connect with knowledgeable physicians has helped allay some of my initial fears. Although I have reduced physical activity, I still enjoy racket sports and golf but moreover, I was able to connect with people with similar experiences .