Shocking
Shocking
Yes, it is shocking to learn the bigger picture about BAVD.
I was shocked when a large aneurysm was found in my husband's chest. No one was looking for it. We were told 11 years earlier that he was fixed for life when his BAV was replaced with a mechanical valve.
I was shocked when I heard the neurosurgeon tell my friend that she had an aneurysm in her brain, behind her left eye. We already knew about the BAV and aortic aneurysm in her chest.
And I was shocked when someone told me about the successful fight to save her husband's eyes, only to later lose the fight for his life in an ER. No one associated the eye problem with anything else. Yes, he had a known problem with his aortic valve. But when he went to the ER with chest pain and a heart attack was ruled out, they said it was anxiety. He died in that ER from a torn aortic aneurysm. Later, his wife found the words "probable bicuspid aortic valve" in the records kept by the cardiologist.
Knowledge has been slow to spread, but there is much more information now in the medical literature.
Here is a new paper, this month, from Stanford, in Northern California:
http://www.ncbi.nlm.nih.gov/pubmed/...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
The phrase "connective tissue disorder" is used in the abstract.
I too have felt that we were on a different planet. I understand.
Today, with my husband and his family, we have arrived in a place where we know what is known, and we recognize that not everything is known.
We also know that we will never let down our guard. In the mean time, we are still together, despite BAVD.
Best wishes,
Arlyss