Speaking Up about BAV - Find Your Voice!

Red Jasper
The "warrior" stone

I spent many years, from 2001 onward, reading and questioning, devouring everything I could find about those born with bicuspid aortic valves.  Initially it was trying to understand how someone supposedly "fixed for life" by aortic valve replacement surgery 11 years earlier had somehow developed a large ascending aortic aneurysm.

The reading and questioning no doubt made a difference. I know we avoided some pitfalls. Others ensnared us, diminishing our quality of life.

Fluoroquinolone Warning
Today I am moved to write and encourage BAV individuals and families to find their voice and speak with their doctors about medications after reading the December 20, 2018 FDA warning about fluoroquinolone drugs. The following is from the announcement:

 "Health care professionals should avoid prescribing fluoroquinolone antibiotics to patients who have an aortic aneurysm or are at risk for an aortic aneurysm, such as patients with peripheral atherosclerotic vascular diseases, hypertension, certain genetic conditions such as Marfan syndrome and Ehlers-Danlos syndrome, and elderly patients.  Prescribe fluoroquinolones to these patients only when no other treatment options are available.  Advise all patients to seek immediate medical treatment for any symptoms associated with aortic aneurysm. "

The large population (1 in 50) of those with BAV, known to be vulnerable to aortic aneurysm in the chest, is not listed as one of the patient examples. This leaves something for us, the patient and family members, to do. We can speak up and mention it to our doctors.

From reading, I knew that the medical literature had begun to report on this class of drugs and the risk to the aorta. Two different times, with two different doctors, I told them about this and asked that an antibiotic from a different group of drugs be given to my husband. The doctors were not aware of the information in the literature, but they listened and found another option. This was well before there were any official warnings. I will always be glad we avoided any potential complications - he already had more than his share of issues without anything more.

Blood Pressure Medications
Recently letters have come from a pharmacy addressed to my late husband, warning of contamination of blood pressure medications he had been taking. He is still in the pharmacy database. I was aware of this long before those letters arrived and would have taken steps to protect him if he were still alive. 

Ultimately, I lost him to a raging infection in his heart. I cannot begin to tell you how much it still hurts. I can tell you that it would hurt even more if we had not done what we could all those years to protect him.

I often say that those with BAV are warriors. For those still in the battle, please read, ask questions, and speak up for yourselves. It could make all the difference in the quality and length of your life! 

With very best wishes

 for peace and joy 

this holiday season,

 and a safe, healthy 2019

~Arlys Velebir