For me I have never really stressed about having Marfans Syndrome and carried on with life as normal although have always had regular check-ups to monitor my heart. When I was in my early thirties it was suggested I should consider having the operation on my heart as the aortic valve was beginning to grow. At the same time, I was made aware of the new procedure which simplified the usual technique and removed the future dependency on drugs. Even though the procedure was new I was reassured that in a worst case situation and the operation was not going to be possible/or have complications the doctors could still revert to the traditional procedure.
For me it was the right decision to go ahead with the operation as I was still young and healthy which would reduce the risk of complications – and of course the thought of 3 months off work catching up on DVDs, daytime television and that pile of books seemed like upside!
Once the operation was scheduled I was admitted into hospital on a Sunday afternoon with the operation planned for Monday morning. From that point the next thing I remember is waking up Tuesday afternoon in the recovery room trying to have a conversation but everyone else insisting that I kept my oxygen mask on which makes chatting very difficult!!! From there it was down to the HDU for an unusual night of drug induced dreams, prodding and poking from the nurses but nothing too horrific.
Next morning it was up and out of bed early (albeit helped by the nurses) for an examination and removal of some of the various drips and pipes. By this stage I felt ok and buoyed on by a visit from my best friend who commented on how well I looked (having said that I found out some weeks later that actually he thought I looked like death – well you can’t look good all the time!). That same afternoon I was moved to a normal ward.
The next few days passed pretty uneventfully other than a flow of visitors and of course the regular visit from my friendly physiotherapist who liked nothing more than marching me around the ward for exercise at break neck speed before being discharged on the Saturday morning, less than a week after arriving. Oh, one more thing, make sure your friends don’t bring their joke books as laughing can be a bit on the painful side!!
The next six weeks were the hardest – not particularly from the discomfort (that got better by the day) but more the boredom and lack of attention span – apparently a side-effect of the anaesthetic. The books I thought I’d read, the DVDs I thought I would watch all remained untouched and daytime TV drove me round the bend. Having said that, I still managed to carry on with some social events, meeting work colleagues for Christmas dinner and a limited amount of Christmas shopping. On a happier note and a surprise twist, being young and healthy meant that rather than having three months off work I was able to start a new job within two months of the operation which proved to be a welcome relief after being stuck at home.
Within months of the procedure life started to return to the normal routine of working, travelling, regularly swimming and partying. Almost nine months have now passed and I have no side effects to report, the last thing I’m waiting for is the scar to disappear which is making good progress.
All in all I would say the procedure has been successful and although I can’t pretend the operation and recovery time were particularly pleasant, it was by no means horrific and now I live life to the full without worrying about my aorta.