Back to Medhelp after 23 years

[Mamabearo2]

I posted a question about my Aortic valve over 23 years ago.  The answer I received from the Dr. Prompted me to reconnect with my cardiologist who realized that he had not reviewed my most recent Echo report, but one from six months prior.  My heart had significantly declined in that six months, and I was referred for AVR.  Despite the fact that my surgery was delayed and my AR had increased significantly and my heart function had declined, I came through the homograft surgery well, and the valve that I was told would probably last 10-15 years, has been doing a good job for me for almost 24 years…..until recently???   My most recent echo indicated that I now have “moderate” stenosis, as well as regurgitation, and my EF is now considered mildly low (47%}.

Despite the fact that I am seeing physicians at a top notch teaching hospital, I am feeling a lack of confidence in my doctors’s plan to start me on Entresto and Jardiance to improve my left ventricular dysfunction and wait 6 months for another Echo. I’m all for getting a little more time with this valve, but don’t want to delay surgery too long again and end up with higher risks.  I have a genetic connective tissue disorder that causes tissue friability and increased risk of bleeding, as well as a dilated ascending aorta, and I have been reading some recent research and medical articles that suggest that moderate AS with a decreased ef may be an indicator for surgical intervention.

When I ask questions, I’m getting answers like “you don’t need surgery yet”, but no information that reassures me or really informs me about the basis for this opinion.  After my experience last time, I’m not comfortable just taking the Dr.’s word (the same one that told me 23 years ago that my fatigue and Dyspnea were not related to my valve issue (he was very wrong then). I do have an appointment in mid January with a new cardiologist (hopefully one that communicates and collaborates with me more). I’m not only feeling uneasy bc of my previous experience with this doctor, but also bc of what I have been reading suggesting that moderate AS with reduced ef may be an indication for replacement.  I’m not a medical professional, and I realize that in a big hospital cardiovascular center they encounter these situations daily, but this is not a tooth extraction, and I don’t like feeling like I’m being dismissed with a pat on the head. It’s frustrating trying to read medical articles knowing that I don’t understand much of it, but am able to discern that “it’s not time for surgery yet” is not an adequate answer to the dilemma of what is the best timing for AVR when there is both moderate stenosis and regurgitation, there is a decreased EF, and  the patient is symptomatic and has Comorbid  factors to consider?

Does anyone have any insights or information that might help me, please?