Shannon's Posts

Hello my heart warriors! I’m grabbing a few moments and wanted to reach out after a very big year full of change. I honestly don’t know where to start. I celebrated 6 years since my aorta repair and aortic valve repair Feb. 22. I often think back to the long length of time I was in the hospital due to severe pericardial effusion/cardiac tamponade, and so thankful to the ways this past year has shown me I am stronger than I ever imagined. My two daughters and I sold our house and moved just into the next town. Good lord, what an undertaking! I am also back to work as a Kindergarten Teacher Assistant and loving it! I was a school counselor for 10 years before children, and have decided to work on getting my teaching license. Not going to lie, becoming a single parent, working full time, grad school work has been incredibly demanding. All the while, trying to remember to take care of myself. I’m back at going to Cleveland Clinic twice a year to observe the newer aortic enlargement next to my valve. They are trying to time it to do replacement and fix the aorta at the same time… still feel uneasy knowing there’s more to be done and gone through with my heart. I’ve have made strides in not allowing it to consume me. I pop on and read your posts and it fills me with such strength and perseverance to hear your stories. Please keep sharing!

Let’s talk tattoos… at almost 48 years old, after experiencing so many challenges these past several years, I’d like to get a discreet tattoo. It would be my first. I am terrified of endocarditis. Granted, I had valance repair and not replaced, I am always anxious of the possibility of getting sick and causing damage to the heart. What has been anyone’s experience? Thank you!

Hello heart family! Although I check this blog every day, I just haven’t been at a place to post. Today is a new day and I wanted to share some updates. I am 5 1/2 years out from bicuspid valve repair and ascending aorta replacement. I have Turner Syndrome, in the family of Marfans, etc., where we’re more susceptible to aortic aneurysms. Last winter my local cardiologist wanted an updated MRI/MRA, especially since the possibility of another aneurysm could happen. Indeed, there was growth and measurements were not favorable. I went to Cleveland Clinic beginning of June and spent all day on testing and seeing my cardiologist, my surgeon, and also a new dr who works with genetic/heart anomalies. Conclusion: yes, the section of the aorta left ( right off of the valve) is enlarged, however the tubing from the graft is right above, so therefore if there was a tear/dissection… there isn’t much tissue to tear. Also, I was extremely sick after surgery, due to pericardial effusion. The scar tissue that built up around that area is extensive and like a glue, holding everything together. No surgery at this time, but have increased monitoring to every 6 months. I’ll take it! My girls and I have moved twice since June, finally settling into our new place and a new rhythm. My husband and I are still separated, and although reconciliation is what I long for, I am accepting it doesn’t look like it will happen. I was a fear monger leading up to surgery and also all these years after, so scared to do anything, always waiting for the next shoe to drop. Looking back on what I’ve been through these past 5.5 years, but mostly these past 8 months… I am overwhelmed by the amount of growth I’ve gained in “life.” Sometimes it truly takes some really hard lessons in order to see the light and beauty. God bless!