Hi Nathan and Debi -
Mended Hearts is a great place to connect with other adults with congenital heart disease. I was born with a bicuspid aortic valve (BAV) and a ventricular septal defect (VSD) and had open heart surgery in 2016. I received a bio-prosthetic valve and also had an aneurysm repair. Debi is right, it is common with people who have a bicuspid valve to develop an aneurysm. It makes sense that when the valve tightens, the aorta can become compromised. The good news, many people born with CHD are living well into adulthood and with full lives. The advice I always give is for people to learn as much as you can about congenital heart disease and stay on top of emerging treatments. When I was first diagnosed, Transcatheter Aortic Valve Replacement (TAVR) wasn't a thing -- and when I had surgery, I was too "low risk" to be considered for one -- now TAVR is more common and there are successful "valve in valve" procedures. Knowing that was on the horizon was a factor in my decision between a mechanical and a bio-prosthetic valve. (I also wasn't crazy about the idea of blood thinners for the rest of my life if I didn't have to). The second piece of advice is to be your own advocate - develop a relationship with your medical team - your primary care doctor, cardiologist, surgeon, and if you are lucky to have an adult congenital heart disease specialist. It is important that all of your medical team understand that you are a CHD patient and that your heart may not look like everyone else's! Being a CHD patient is a lifelong endeavor - literally from the moment you are born, you will be a heart patient, but you are absolutely not alone! Look on the Mended Hearts website for more information about CHD. I particularly liked this story --
My Heart Journey - So Far - Mended Hearts.Wishing you both the best,
Lea
Houston, TX
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Lea Parker
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Original Message:
Sent: 08-11-2021 15:50
From: Debi Ries
Subject: Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane
Hi Nathan!
I'm a little new here too. I've had open heart surgery to replace my native aortic valve, along with surgical ablation for A-fib. That was in 2011… fast forward to present. The bio- prosthetic valves wear out over time, so I'm in the watchful waiting period for another replacement as it is deteriorating/ stenotic. I have also developed a 4.2 cm Thoracic Ascending Aortic Aneurysm, which I learned about in 2018. These type of aneurysms often develop in peeps like me who were born with a bicuspid aortic valve. I have no symptoms other than short of breath periodically after "exercise".
RE Aneurysm:
I panicked as most people do when they learn of an aneurysm near their heart. 😱 Across the years (quite recently actually) I have come to accept it, and trust my long-time surgeon and cardiologist. (Although, I'm still an "investigator" and try to question any and everything they tell me, plus do my own reading about my condition/s) The aneurysm has been stable since 2018, so I'm being told I can have the less-invasive TAVR procedure to replace this current bio-prosthetic valve IF the aneurysm remains stable. This news is HUGE for me, since recovery time is so much shorter.
In the meantime the aneurysm will be checked and measured … it was every six months but because it's stable, annually is the protocol.
I don't have any experience with the other conditions I you mention other than I have an "atrial septal aneurysm" which dos not require any treatment. It was noted in 2006 when I initially found out about the valve.
Happy to answer questions or concerns from a patient's perspective.
KEEP LIVING AND ENJOYING YOUR LIFE !! 🤗
Blessings,
Debi
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Debi Ries
San Diego, Ca
AVR / Open Surgery 2011/ TAAA 4.2 cm / Afib
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