I hope you are all well and pain free. Well back in July I went to genetic counselling to determine whether I had Type 4 EDS as well as Classic EDS. Well, through visual tests I didn't, yay! Today I spoke to my genetic counsellor and because my aortic root has continued to dilate, he is now sending me to have the Vascular gene test. I cried.
I have recently visited a cardiologist who has stated that my aortic root has dilated to 4.3cm. At 4.5cm they will have to do surgery to fix it. That means that basically they cut my chest open and put a synthetic band around the aortic root so it will not burst. So that was bad enough news and then today there was the news from my gentic counsellor. I am starting to feel like I need just a break from the negative news and have some wonderful news coming my way.My son has been accepted to have his pectus excavatum operation done within the next 6 months. He is super excited about this, I am super nervous. It means he will no longer have a dent in his chest and he will feel so much more confident to take his shirt off when he swims.
So, fingers and toes crossed that the vascular gene test will come back as not being identified and that this silly heart dilation is just a thing that has happend.
Love Rowena
x x x x
