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Hey Spookygal. I'm sorry to hear about the results and I totally understand your concern and anxiety over this. It's a big adjustment to accept that something is wrong with one's body that needs fixing. However, monitoring it and fixing it is the absolute number 1 most important thing to do so...

Thank you! It's really incredible to me how effective that first generation of mechanical valves was for such a new technology. I'm glad your valve is still doing great :)

Sure. Losartan is the only pill I take that's prescribed by a cardiologist, for controlling blood pressure but also because it has some evidence in reducing the speed of dilation in the aorta in Marfan patients (and thus potentially some BAV patients). I also take Topiramate for migraines and...

Thank you! Yeah I feel pretty okay. I'm still walking several miles a day and doing some jogging and biking a few times a week as well. The only thing I've really noticed is being fatigued during the day more often than before. I've had random chest pains for as long as I can remember due to...

Hey Spookygal! Thanks for posting. Welcome to the forum (and the BAV club). I'm sorry to hear about your rough experience with the cardiologist! I know it can definitely be a huge shock to receive this news. I also have BAV, mine has severe regurgitation, I'm 28. It's been followed since I was...

Hey Josh! I'm glad the issue was caught in time and I hope your surgical consult goes well. I'm in a similar position, 28 with a BAV & regurgitation upgraded to severe in late 2023, waiting on some more tests and a surgical consult. Wishing you the best!

I agree with this, and I'm glad your situation worked out well at UCLA. Waiting until 25% EF before surgery is wild. My cardiologists are concerned with 54%, and I think they're right to do so. It's interesting you mention the sports/physical activity. I similarly was very active in...

Thanks so much for sharing all the knowledge and resources you have! I did lurk quite a bit and read some things on your blog which were very informative in terms of valve selection and INR management. I just finished watching these videos too. It's really amazing to me how much mechanical...

Thanks for the info! That's really interesting yeah. I wonder what that sugeon at Cedars-Sinai was seeing/thinking. I guess it makes sense that surgeons just want to do surgery hah. My cardiologist at Yale-New Haven in CT at 24 looked at me with moderate-severe regurgitation and a 4.2cm root...

Hey! Thank you. Yeah my previous cardiologist had a similar concern, so I had a genetic panel for Aortopathy including Marfan and EDS done a year ago that came back all negative. However, based on my understanding, these panels only test for the commonly known and proven genetic anomalies that...

Hey! Thanks so much for sharing your experience. That's very interesting. Dr. McGrath is my new cardiologist and I just saw her Monday. She agreed with me that mechanical is the way to go if a durable repair isn't feasible. I agree about the high technical requirements for the Ross. Based on...

Hey Mark! Yeah I think this is a good point, thank you. I feel pretty confident about the team at OHSU so far, but I haven't met the surgeons yet of course. UW in Seattle has a good valve team from what I can tell, and Cedars-Sinai and UCLA are a couple days away by car as well, so I have some...

Hey Chuck, thanks so much for writing back and sharing your thoughts & experience! I hope you are doing well. It's really nice to talk to other people who have experience with this. I don't know anyone in my life who has had a valve replacement or even OHS in general. 100% agreed and I think...

Hey! I'm really glad to hear that your AVR was a success. I'm not qualified to speak on the exact ramifications/details of TAPSE measurements. However, broadly speaking, I really relate to the experience of seeing an abnormal reading on an echo and it causing concern and lots of questions! It...

Hey everyone! I wanted to thank you for being on this forum and express my gratitude for its existence. Reading through everyone's experiences & thoughts here has been very informative and comforting. I'm 28 years old, lightly-moderately active, not/minimally symptomatic with a BAV, severe AR...