Preparing for Your Appointment Plan to take someone with you to your appointments if possible. • A lot of information will be covered and having someone else to listen along with you will help you. • It is extremely difficult to learn that you have a heart valve problem and/or aneurysm, and it is important to have support. Create a medical history. Any diseases and surgeries that you have had are an important part of who you are medically. Even if the story is a simple one, it is helpful to write it down in a brief, factual way, including dates whenever possible. Capturing key points about your parents and other family members may also be important. In asking about expanded family, such as grandparents, aunts, and uncles, a pattern of sudden heart related death is sometimes uncovered. Aortic valve stenosis may be associated with sudden death. And unless an autopsy clearly ruled out aortic aneurysm rupture or dissection, it is possible that was the cause of death, not a heart attack. Familial aortic disease is sometimes discovered in this way. Although aortic disease health care professionals will ask you questions and record your medical history, you may also wish to share a copy of your medical history with them. This is especially true if you have several complex medical conditions. Prepare a list of questions. Often we later find ourselves saying, "I forgot to ask about that". Making a list ahead of time will help make sure that your important questions are covered. Write down the questions that are really bothering you. Getting answers to your questions will clear up any confusion and allow you to focus on the things that are most important. You will find that with time, there will always be more questions. Experienced aortic centers will be prepared to anticipate many of your questions and answer new ones as they come up. Sample Questions To help you get started, here are samples of questions, in no particular order, that are typically important for those being treated for aortic disease. 1. Heart valves (There are four heart valves, but two of them, the aortic and mitral, are most commonly affected.) a. How well are my heart valves working? b. When should they be checked again? 2. Other heart conditions a. Should I be screened for coronary artery disease? b. How do I know if anything else is wrong with my heart? 3. Aorta a. How big should my aorta be normally? b. Do I have an enlargement or aneurysm of my aorta? If so, where? c. If I have an aortic aneurysm, how dangerous is this? d. If I have an aortic aneurysm, what caused it? 4. Tests a. Do I need any other tests? b. If so, what tests and what are they for? c. How safe are these tests for me, if I have an aortic aneurysm? d. Are there tests that I should avoid if I have an aneurysm? 5. Questions for the Surgeon (The answers should not be genral but should apply to surgery done by this surgeon, at this center.) a. Do I need surgery? If so, how soon? b. What kind of surgery do I need? (valve, aorta, or both) c. What is the risk of death in your hands? (statistics in last two years) d. What is the risk of permanent injury in your hands? (statistics in last two years) e. What is the risk to me if I do not have surgery? f. How rare is this kind of surgery? g. How many of these surgeries have you done in the last year? 6. Infection a. Am I at greater risk if I get an infection? b. When do I need to take antibiotics? 7. Blood Pressure a. What should my blood pressure be? b. What medication do I need, and how should I take it? c. What if my blood pressure goes too low? 8. Exercise and lifestyle a. What exercises can I safely do? b. What exercises are dangerous for me? c. Would taking Coumadin affect my lifestyle? d. What about my diet? e. Should I stop smoking? f. I don't smoke, but someone else in my home does. Is this a problem? 9. My Family a. Could others in my family have this? b. I would like to have a baby. Is this dangerous for me? c. If I have children, are they at risk of inheriting this? d. Is genetic testing available? If so, why would it be helpful?

BAV is Common It is very likely that you know someone with BAV. It could even exist in your family or extended family without you knowing about it.

BAV & TAD Programs

Generally you should be

able to arrange a

consultation at an aortic

treatment center by simply

contacting them.

When you contact an aortic disease center you should expect a prompt, compassionate response from someone who will guide you through the evaluation process there.