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Mayo Clinic Appointment - BAVD
Hi All - I'm new here and starting to panic a little (48 year old/Female). I sought a 2nd opinion from Mayo Clinic for BAVD and have testing and consultation appointments later this week (2nd opinion is due to lack of excellent care available in my location). I'm assuming I'll have a million questions after my appointments and figured I'd get a jump on things today.
I've had fairly regular Echo's over the past 10 years and am seeing the stenosis worsen. I know there is a wealth of information on this site and plan to study/read as much as I can.
Historically, I've not been good about asking the cardiologist questions or relaying my symptoms - but promising myself I'll be more assertive this week and get answers and information.
AHAASAKatie, November 27, 2018 5:01pm EST
Welcome, we are so glad you are here! I have a few patient education references to share that I think might help you.
You can also walk through a step-by-step interactive guide explaining your valve issue and treatment options with helpful videos, text summaries and links along the way and pre-surgery checklist: Facing and Recovering from Major Surgery (PDF).
I hope these resources help you. We also have a very active heart valve ambassador group. I am sure one of our members will be along and respond soon.
AmbassadorC, November 27, 2018 9:30pm EST
Hello and Welcome to the Support Network. Katie has shared with you a great starting point for researching your stenosis. I commend you for getting a second opinion and doing your research ahead of your scheduled appointments. What I have learned from my experience with OHS for a leaking mitral valve, is that you MUST feel 1000% comfortable with your cardiac team and decision making. Feeling comfortable mentally, by knowing and understanding the path of your diagnosis, to the recommended procedures will not only put your mind at ease before the surgery, but also give you the confidence needed before heading into the OR. By researching the Valve Education sight that Katie pointed to, will give you a head start before your appoitments so that you can have your "check list" of questions ready ahead of time. You have chosen a Center of Excellence for your second opinion and I have no doubt that you will get all your questions answered. However, that said, I would also like to stress the importance of being your own advocate. As you mention, historically you have not been good about asking questions or realying your symptoms, now is NOT the time to hold back. This is YOUR heart that will be in thier hands, and you MUST be proactive in establishing an open and honest dialoge with your cardiac team. This will also be vital to your recovery post surgery. I know it's very easy to back off when there is a ton of information being thrown your way. It certaintly helps if you have an advocate to assist with note taking while you are being assessed. And never fear, if you do not have someone with you, you always have us, the heart vavle community to lean on. We weclome you with heart!
If you are interested, a blog was posted about the questions I shared with the community to ask your cardiac surgeon when the time has come. I am happy to share these with you if you wish. I also kept a list of tips and tricks re: OHS that I wished I would have known that I am also happy to share if you have not come across those.
Keep on fighting with heart,
JNitz, November 27, 2018 10:49pm EST
Thank you both! How do I locate your blog ?
AmbassadorC, November 28, 2018 7:03am EST