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Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

  • 1.  Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

    Posted 08-07-2021 09:40
    Hello!
    My name is Nathan and I am new to this community.  I am trying to find a community of people who are just like me.  I am feeling alone right now and feel the need to get answers and help.  When I was born, I was born with a hole in my heart.  I had surgery by the age of one to correct it.  The doctors had a team fly down from Canada to help with my open heart surgery.  They placed an ASD patch on my heart to cover the hole.  Then heart tissue grew over the patch.  So, I still have a patch on my heart.  Back in 2014, it was discovered that I had a Congenital Aortic Stenosis and Subaortic membrane.  In 2016, it was discovered that I have Atrial Septal Defect and Ascending Aorta Dilation.  This is where I got really scared.  I didn't know what to do.  I kept messaging my heart doctor all the questions I had because I know that aortic dilation isn't a good thing.  He said I need to watch how much I lift and not to be too strenuous on my body.  I have been trying to be extra careful.  I am almost 40 and I want to be able to live a long life.  I was thinking I could die any day.  My doctor calmed me down and said that people with aortic dilation can live a long life if they follow the recommended protocols to keep healthy.  I always have this in the back of my mind.  My doctor also won't do surgery on me until I am over a certain measurement with my dilation.  It has been an interesting year and I want to find people who are like me living a "normal" life with Ascending Aortic Dilation, among other heart defects.  I hope I found the right community and if you or anyone wants to talk about it with me, I would greatly appreciate it.  Thank you for reading about my heart story and I hope you understand where I am coming from!  Nathan

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    Nathan Bautista
    Teacher
    Minneapolis Public Schools
    Minneapolis
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  • 2.  RE: Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

    Posted 08-11-2021 15:51

    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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  • 3.  RE: Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

    Posted 08-12-2021 16:08
    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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  • 4.  RE: Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

    Posted 08-13-2021 11:06

    Hi Lisa!
    Well said… all of it! Thank you for the link.
    Debi :)




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    Debi Ries
    San Diego, Ca
    AVR / Open Surgery 2011/ TAAA 4.2 cm / Afib
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  • 5.  RE: Ascending Aorta Dilation / Atrial Septal Defect / Congenital Aortic Stenosis with Subaortic Membrane

    Posted 08-14-2021 20:08
    Hello Lea!
    Thank you for the information.  After I found out, I was hoping there would be much advancement with different heart surgeries.  I still hope that to this day.  Thank you for the advice on making a relationship with my medical team.  I believe that they are the ones who I can also turn to for help in this journey.  I am five years into finding out about my aorta, although the heart doctor said it could have been there longer than that.  But who knows.  All I know is that I need to take care of myself in the best way I can and follow the certain health measures that my doctor team has given me!

    Nathan

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    Nathan Bautista
    Teacher
    Minneapolis Public Schools
    Minneapolis
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