I’m so thrilled to have found this community! I’m in the process of trying to see an Adult Congenital Heart Disease specialist, rather than a general cardiologist. But, I thought I’d reach out, in the meantime, to see if anyone has had a similar experience.
I had my ASD closed via catheterization with an Amplatzer device in 2015. My main symptoms were heart palpitations, fatigue, and shortness of breath, and my doctor diagnosed me based on right heart enlargement and the bubble test, a TEE, etc.
Following my surgery, I was told everything worked perfectly. However, one year following, I was told I had a small residual shunt around the device, but that it was nothing to worry about.
After returning to my activities as a dancer, I noticed that I was still having symptoms, including shortness of breath and palpitations. At my follow up with a new doctor (I moved states), she told me my right heart was still enlarged, and that I still had a significant shunt. She said she hypothesized that I had another defect, or a second ASD, and an MRI measured a shunt that measured ‘borderline’ (ie: if it was even slightly larger, it would be considered necessary to close). However, she dismissed all the evidence after a TEE came back ‘normal,’ meaning they couldn’t visualize a residual or second hole, and my device looked well seated.
I worried about leaving my heart be, especially considering my activity level, and have read a lot about the dangers of residual holes with patients who have the Amplatzer device, specifically.
Has anyone else had this experience, and what was your diagnosis? I’m still waiting to receive calls back about scheduling my next tests, but am frustrated with the dismissiveness of my doctors and lack of diagnosis.
Thank you so much <3