I had no idea such a simple question was going to bring about so many changes. Before that day in July, the answer had always been "no" but now apparently this was no longer the case. I had gone in because pain in my shoulder was getting worse seemingly making my neck tighten up. But with all the ads on tv about how different heart attacks are for women, it was making me nervous and now here was a doctor saying I definitely had a heart murmur after 46 years without one. They scheduled me to come in the next week for an echocardiogram.
The awful thing about medical stuff is all the waiting. You wait for the tests. You wait for the results to come in. You wait to meet with the doctors to get the results. Then you wait to have the next tests that the previous tests indicate you need done -- it's a vicious cycle. The echo came back that I have a Congenital Birth Defect called BAVD for short or Bicuspid Aortic Valve Disease. We haven't figured out yet if it comes from my mom or my dad's side of the family which is important because cousins etc need to get screened & know what to look out for.
Because I have a Bicuspid Valve my kids each have a 50% chance of having it in some form (aren't they fortunate haha). Marisa was born with a murmur but was always told it was innocent but she should take antibiotics before any dental work. She started some preliminary testing this week. I'm doing a lot of praying for her. Christopher on the other hand, does not want to know. He doesn't plan to quit smoking at this point in his life (he's 25 & single), nor does he want to change his lifestyle/eating habits-so he doesn't see any point in going through any tests right now.
I have now had a TEE (Transesophageal Echocardiogram) where they put the scope down your throat to get an unobstructed view of the aorta. It sounds much worse than it is. It went very smoothly. The first cardiologist is suppose to call me with an appointment but I have one scheduled next week with a different Cardiologist who works at the same center as the surgeon I want when I get to that stage.
Meantime, Marisa has become our healthy cook. She makes us fruit/vegetable shakes everyday (neither of us owns a juicer but she has this blender thing down). She is becoming quite the coupon-er to so she can save money on all these health foods and organic products. She has been reading everything she can get her hands on to learn about this disease and all the forms it can take.
Two sites I really like are www.bicuspidfoundation.com & www.bicuspidaorticvalve.org I believe information is power especially when it comes to your health. This is also why I'm 'shopping' cardiologist. We did not feel like the first doctor we saw 'appreciated' our questions. I had Marisa with me and my sister, Jamie. We went prepared with questions written down, etc. He really seemed bored with us & very short until finally Marisa asked him, "So, you're saying we don't have to worry about this?" He stopped, looked at us and said, "No, she could drop dead at any minute." I cannot say he exactly inspired confidence in any of us. I'm hoping we get a better click with this next doctor since the cardiologist organizes all the care related to the BAVD which can range from heart valves, dissections, connective tissue diseases, neck issues, & brain aneurysms among others.
I'm tired out for now & of course this is all only my perspective on things.
Renae
The awful thing about medical stuff is all the waiting. You wait for the tests. You wait for the results to come in. You wait to meet with the doctors to get the results. Then you wait to have the next tests that the previous tests indicate you need done -- it's a vicious cycle. The echo came back that I have a Congenital Birth Defect called BAVD for short or Bicuspid Aortic Valve Disease. We haven't figured out yet if it comes from my mom or my dad's side of the family which is important because cousins etc need to get screened & know what to look out for.
Because I have a Bicuspid Valve my kids each have a 50% chance of having it in some form (aren't they fortunate haha). Marisa was born with a murmur but was always told it was innocent but she should take antibiotics before any dental work. She started some preliminary testing this week. I'm doing a lot of praying for her. Christopher on the other hand, does not want to know. He doesn't plan to quit smoking at this point in his life (he's 25 & single), nor does he want to change his lifestyle/eating habits-so he doesn't see any point in going through any tests right now.
I have now had a TEE (Transesophageal Echocardiogram) where they put the scope down your throat to get an unobstructed view of the aorta. It sounds much worse than it is. It went very smoothly. The first cardiologist is suppose to call me with an appointment but I have one scheduled next week with a different Cardiologist who works at the same center as the surgeon I want when I get to that stage.
Meantime, Marisa has become our healthy cook. She makes us fruit/vegetable shakes everyday (neither of us owns a juicer but she has this blender thing down). She is becoming quite the coupon-er to so she can save money on all these health foods and organic products. She has been reading everything she can get her hands on to learn about this disease and all the forms it can take.
Two sites I really like are www.bicuspidfoundation.com & www.bicuspidaorticvalve.org I believe information is power especially when it comes to your health. This is also why I'm 'shopping' cardiologist. We did not feel like the first doctor we saw 'appreciated' our questions. I had Marisa with me and my sister, Jamie. We went prepared with questions written down, etc. He really seemed bored with us & very short until finally Marisa asked him, "So, you're saying we don't have to worry about this?" He stopped, looked at us and said, "No, she could drop dead at any minute." I cannot say he exactly inspired confidence in any of us. I'm hoping we get a better click with this next doctor since the cardiologist organizes all the care related to the BAVD which can range from heart valves, dissections, connective tissue diseases, neck issues, & brain aneurysms among others.
I'm tired out for now & of course this is all only my perspective on things.
Renae
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