Hi all, thanks for being here, I'm really glad I found this group as my anxiety is up again about my descending thoracic aortic aneurysm. I've been all alone with this since 2007 and basically forgot about it after 2012 when they stopped scanning me, until September 2024 when I requested a scan before I headed out alone on an extended RV journey. Now I'm moving to Florida and really want to be evaluated at the Mayo in Jacksonville. What do I do next? Also, can anyone relate to my "watchful waiting" journey?

More on my journey: I was originally diagnosed in 2007 with a 2.9 cm "non-penetrating aortic dilation with multiple outpouchings." In 2012, my then cardiologist said it was stable and no reason to scan me ever again, unless I became symptomatic, which I may have been a couple of times, but scans were negative and determined to be panic/anxiety (gee, I wonder why??). In 2013, I was also diagnosed with an undifferentiated connective tissue disorder, which my mom and her grandfather also had. I've never had any follow up on that diagnosis. Then in September 2024 before I headed out on an extended RV journey alone, I requested a scan, and my cardiologist of two years flipped out when she saw the results. She referred me to vascular surgery and surgeon says noooo, we don't do stent grafts for a 4.1 cm aorta with penetrating ulcer with pseudo aneurysmal components, come back in six months for another chest CT, which I did a couple weeks ago. Now the largest transverse diameter of my proximal descending thoracic aorta has grown from 4.1 cm to 4.2 cm, and the PAU has grown from 1.6 x 1.7 cm to 1.8 x 2.0 cm. I'm really hoping I can get some better coordinated care and more complete evaluation at the Mayo in Florida and also feel more confident about my plan of care, especially any exercise limitations. My current surgeon says no limitations on exercise or anything, but I just read something on the Univ. Michigan website that says there's anecdotal evidence that playing tennis (one of my favorite activities) can increase the risk of dissection! I'm just feeling very confused and alone so yeah, hoping someone here can relate and have any suggestions. Thanks!