It has been a year since my acute ascending aortic dissection happened at work and my near death experience during my life saving operation and slow recovery. Since then, I have been trying to connect with people who have had the same operation and are suffering from the same condition.
Before my emergency operation, I had been healthy and I had never heard of this rare and often lethal disease, involving the connective tissues of the arteries. Now, my genes are being tested to find out which of the genetically affected tissue disorder I have. This might take a long time as the testing is complex and time consuming. This condition is hereditary and there is a 50 percent chance that my 3 children could also be affected. They are now also having to have regular scans of their arteries.
While I started this blog, writing about my experience and reconnecting with old friends on my facebook page, I continued to search for support groups and joined an international one on facebook called Aortic Dissection Support Group. The contact with people of all ages and from many countries who share and comment on their condition and experience has been immensely valuable for me. From this contact, I found out about another website, Aorticdissection.com, with lots of information, personal stories and scientifically founded research s well as specialists who report on their findings.
From what others write about their own experiences, I find that there might be a need for patients like me to not only rely on the advice and knowledge of their local cardiologist and GP but to take a wider view and compare facts. I found particularly this website very helpful and perhaps you are interested in also taking a look if you or someone close to you is afflicted.