Patient Voices: Hetty Donovan
Type A dissection at 26
“Are you sure?” – words I will never forget from the night I experienced a type A aortic dissection and aneurysm. It was the moment I realised how serious the situation was.
This is what the ED Doctor asked the Radiologist as I was wheeled from the CT scan after being told I had dissected. You could sense the shock/horror in his voice. It was disbelief that a 26 year old woman was experiencing this medical event without any of the ‘classic’ symptoms or typical prior health issues. My symptoms included chest discomfort BUT not particularly sharp pain, pulsing up my neck, and also loss of feeling in my left leg (which they later suspect was related to the small stoke I also experienced). After being immediately transferred to another hospital in Auckland city, I underwent life saving surgery, performed by two incredible surgeons and surgical team.
Timing and a genetic diagnosis
The week before surgery, I found out I carried the ACTA2 gene mutation but I had not managed to fully learn what it meant for my health yet. Then 5 days prior to surgery, I felt a strange pang in my chest that shot up my neck, leaving me with a dull ache. I wasn’t sure if it was just my mind playing tricks because of the recent news about ACTA2, but still I went to hospital that night. I told them about the ACTA2 mutation but was given the advice that I probably didn’t need a CT scan to check for a dissection because it would be highly unlikely for my age, current health state, and gender. So I went home, diagnosed with a suspected pulled chest muscle.
We can’t know for sure if anything was happening to my aorta at that first hospital visit, but the lack of knowledge around aortic dissections (both by me and the medical staff in ED) meant I was not treated with the seriousness this life-threatening condition needs especially with the added risk that comes with ACTA2. Awareness is so incredibly important, and as I now know, a CT scan could of helped avoid the emergency situation I was put into.
I am thankful beyond words to still be here. Post surgery life has been a scary world to step into but the guidance, resource and support from the John Ritter Foundation has enabled me to confidently be an advocate for my own health. Also I couldn’t have managed without the love and support from my husband, family, friends, colleagues, and various health professionals in NZ.
Its important to me to share my story, because I have hope that one day it might help someone else out there in the world.