Ellie (not her real name), this is for you,
and every other person in the world
with a heart murmur, chest pain, and aortic aneurysm,
who is not receiving the attention and care they need.
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.
Why wasn't Ellie told about this?
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:
The article concludes "In an adolescent and young adult population with an isolated BAV, there is no proven benefit to ACE inhibitor use with regard to slowing rate of ascending aortic dilation." There is a need to keep looking for medical answers, but it is important to know that at this time, nothing has been found to prevent or make an aneurysm go away in those with BAV. If that day comes, it will be shouted from the rooftops, and just in the US alone, sales to the millions with BAV will skyrocket.
Does Ellie have BAV? Well, no doctor has explained that to her clearly either. Everything about her suggests it. Why didn't someone explain what is going on with her aortic valve to her?
Ellie's local center does not do complex aortic surgery. Why wasn't she referred to a major center that does do it? Instead, Ellie was advised to go the local ER if she has chest pain again. She was given papers that describe how life-threatening aortic aneurysm in the chest can be. One wonders if that is the handiwork of lawyers, for the protection of the physicians and the hospital. Documentation that the patient was warned of the seriousness of this. It is difficult to see how words on paper can protect Ellie. If Ellie's aorta tears, could she make it to the local ER, have a CT to find the problem, survive a life flight to another center, and make it through emergency surgery?
What Ellie needs is real help before something deadly happens. So far, she is not getting it. May she find the strength within herself to go to a major center on her own. She needs to find someone who understands her, cares, and has the skill to save her. Until then, may that weak, bulging tissue hang on. If Ellie's aneurysm should tear or burst, with every heart beat she will bleed uncontrollably inside.
Ellie, there are answers and treatment for you.
Please don't give up until you have them.
Ellie happened to cross paths and share her story with someone who volunteers with the Bicuspid Aortic Foundation. Otherwise, we would not know about her. It is an important reminder, lest we forget, that those like Ellie are vulnerable everywhere, despite high tech advances in the treatment of those with aortic disease.
