Ellie lives in a small city in the eastern United States. Ellie has health insurance. But Ellie is not receiving the care she needs. Her life depends on her own strength and determination, her willingness to push through ignorance and find the expertise she needs.
Ellie sought help because of chest pain. Her blood pressure was also high. She has known about a heart murmur for about 15 years. She also knows that her father died suddenly of a "burst heart". He was younger than she is now.
Heart murmur, chest pain, high blood pressure, early sudden death in the family - any alarm bells going off yet?
Ellie had both an echocardiogram and a CT scan. But she did not hear back from the cardiologist who ordered them for 6 weeks. Her calls to him were not returned. In desperation, she asked for an appointment with another doctor, this time the heart surgeon at her local medical center.
From the meeting with the surgeon, Ellie came away with at best confusing and at worst, potentially deadly information.
Ellie was told that she was not a candidate for surgery yet because her aortic aneurysm was not big enough. Ellie is a petite person, but even more importantly, she has chest pain and "heart-related" sudden death in her family.
The following paper was published in 2005.
Perhaps it was when she pressed him, hoping to prevent a catastrophe like her father's, that she was told she "would not come off the table alive" if she had surgery now. Really? What would make the surgery safer later, if Ellie is still alive when it reaches a larger size? At that point, Ellie felt she was given a death sentence.
She was also told that if her blood pressure would come down, her aneurysm could completely go away. Assuming she has BAV, there is nothing in the medical literature that supports this. Where did the surgeon get this misinformation? There is a recent article about a class of blood pressure medication (ACE Inhibitors) given to those with BAV: