I’d actually heard about Marfan Syndrome before my dissection. It was mentioned on a TV program I was paying vague attention to. After they had given a rundown on the characteristics, I remember thinking, ‘Wow, sounds like me. I hope I don’t catch that.’ Of course, I couldn’t catch it, but my lack of attention meant there were holes in my understanding at the time. I filed it away in my head somewhere and got on with life.
A few years later (2001), I was working on a ‘client site’ in the south of England. This client was in Southampton, and it was probably the 3rd or 4th week working there. It was lunchtime, and I was sitting at my desk in the office, having eaten lunch in the onsite cafeteria. I started to get a warm, woozy sensation on my left side, rising up into my head. There was a strong pain emanating on my left and spreading out over the upper abdomen. I could feel a clamminess in my chest and face. This, I later surmised, was my blood pressure falling through the floor.
I was aware of others in the room, and I recall just sitting there concentrating, breathing, hoping this feeling would subside. I got up and stepped outside. It was a sunny day, and I sat on some steps, trying to compose myself. After a few minutes, I went back into the office and decided that I’d be better off heading back to my hotel room and resting there. I’d probably feel back to my old self tomorrow. I had a quick chat with my manager and told them I ‘wasn’t feeling the best’ and would see them tomorrow.
I got my bag together and walked out of the office toward the entrance gate for the site, where I could get a taxi. I phoned a cab and waited. I still wasn’t feeling good and toyed with the idea of either going to the hotel or going to the hospital to get checked out. This pain was like nothing I’d felt before. It wasn’t searingly painful, but it was definitely out of the ordinary. I mulled over my options. I didn’t want to waste anyone’s time at the hospital, so maybe I’d just take a nap at the hotel. When the taxi arrived, I thought, well, let’s just get checked out.
I arrived at the A&E (emergency room), described my symptoms, and was seen almost immediately. I remember going for the CT scan, which quickly confirmed the aortic dissection, and being asked if I’d heard of Marfan. I recalled the TV program but hadn’t tied the two things together. Once I did, it started to make sense. My tall thin frame, narrow palette, pigeon chest deformity. I was typical Marfan, but no one had ever spotted it. It was hiding in plain sight.
I had the dissection repaired that night with a prosthetic valve fitted. According to the surgeon who saved my life, ‘it was a bit of a mess in there.’
Recovery was slow. I was off work for four months, but once back, things started to return to normal, notwithstanding the permanent medication and the regular health checks I now attend. My son was born in 2007, and genetic testing proved he also has Marfan syndrome. He’s coming up to his 16th birthday now.
I still think about the chance decision I made that day, waiting for that cab. Thankfully, I made the right one.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.