Arlyss
Well-known member
Re. Your Bicuspid Aortic Valve Disease
Re. Your Bicuspid Aortic Valve Disease
Dear Mar and Char,
Perhaps I could just tell you that I recently was in touch with another family where identical twins (brothers in their later 40's) have this condition. The bicuspid aortic valve is the most visible sign of a condition that those pioneering in this field understand to be a genetically based connective tissue disorder, with the most serious affects in the heart valves and the aorta.
What you both describe is recognizable as various aspects of this. You will need to be strong advocates for yourselves, and prepared to provide information to your medical providers. (I know one woman who spoke before a legislative session in her province as part of her efforts to get the aortic surgery she needed!)
I want to give you some informational links. It includes a medical paper from the U of Toronto which may be helpful, since you are in Canada. This paper focuses primarily on the bicuspid aortic valve and the aorta, but is a good start in sharing information.
There are a couple of very important points:
1) When pain in the chest cannot be linked to other causes (medicine for pericarditis did not help), the aorta should be suspected. The aortic tissue may not be normal (the coarctation mentioned is another example of how this condition can affect the aorta), and the aorta can feel pain when its walls are under pressure. This is serious, because aortic tearing or rupture is life-threatening. A CT scan with contrast (or MRI with contrast if available) is the test used to examine the aorta. Also, keeping blood pressure low lessens the stress on the aorta. I hope you can have an aortic scan soon.
2) Pneumonia can be very hard on those with this condition. My husband had pneumonia, which in hindsight we feel was caused by a small amount of fluid gathering in his lungs as his heart valve failed (it was not enough to bother him, he had no symptoms!), making a moist inviting place for bacteria to grow. Once the pneumonia cleared, he was extremely sick, in full blown congestive heart failure. Replacement of his bicuspid aortic valve at that time saved his life. Later he had aortic aneurysm surgery, and today he is monitored carefully because we do not want any more surprises from his heart valves or remaining aorta!
Here are the links
Paper from U of Toronto
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta
Best Wishes,
Arlyss
Re. Your Bicuspid Aortic Valve Disease
Dear Mar and Char,
Perhaps I could just tell you that I recently was in touch with another family where identical twins (brothers in their later 40's) have this condition. The bicuspid aortic valve is the most visible sign of a condition that those pioneering in this field understand to be a genetically based connective tissue disorder, with the most serious affects in the heart valves and the aorta.
What you both describe is recognizable as various aspects of this. You will need to be strong advocates for yourselves, and prepared to provide information to your medical providers. (I know one woman who spoke before a legislative session in her province as part of her efforts to get the aortic surgery she needed!)
I want to give you some informational links. It includes a medical paper from the U of Toronto which may be helpful, since you are in Canada. This paper focuses primarily on the bicuspid aortic valve and the aorta, but is a good start in sharing information.
There are a couple of very important points:
1) When pain in the chest cannot be linked to other causes (medicine for pericarditis did not help), the aorta should be suspected. The aortic tissue may not be normal (the coarctation mentioned is another example of how this condition can affect the aorta), and the aorta can feel pain when its walls are under pressure. This is serious, because aortic tearing or rupture is life-threatening. A CT scan with contrast (or MRI with contrast if available) is the test used to examine the aorta. Also, keeping blood pressure low lessens the stress on the aorta. I hope you can have an aortic scan soon.
2) Pneumonia can be very hard on those with this condition. My husband had pneumonia, which in hindsight we feel was caused by a small amount of fluid gathering in his lungs as his heart valve failed (it was not enough to bother him, he had no symptoms!), making a moist inviting place for bacteria to grow. Once the pneumonia cleared, he was extremely sick, in full blown congestive heart failure. Replacement of his bicuspid aortic valve at that time saved his life. Later he had aortic aneurysm surgery, and today he is monitored carefully because we do not want any more surprises from his heart valves or remaining aorta!
Here are the links
Paper from U of Toronto
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta
Best Wishes,
Arlyss
