Michelle's interview
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How did all start?
Nonspecific chest pain, cardiologist ordered stress echocardiogram and dilated aortic root (38 mm) was seen on echo.
Do you already have a diagnosis? How long did it take you to get it?
Yes, ecstasia has been monitored annually via echo since it was originally seen in 2015. It was stable until 2018, when it measured 41 mm with echo and 43 mm on CT scan with contrast.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Cardiology. Most useful was becoming a patient at a combined heart and vascular clinic that has both cardiologists and cardiothoracic surgeons in the same office.
What has been the most useful thing for you so far?
Becoming a patient of a combined heart and vascular clinic that understands both medical professions.
What have been your biggest difficulties?
Getting past the standard cardiology and into a place that understands both cardio and vascular.
How has your social and family environment reacted? Have your social or family relationships changed?
It’s complicated, some understand, others do not.
Finally, what advice would you give to a person in a similar situation?
Do your own research and be persistent in trying to get an appointment with a thoracic surgeon, or at least a vascular surgeon. In general, cardiology is not the right medical specialty.
