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Just an update as I had another echo today and the trend has continued, I'm now classified as 'moderate' for stenosis and trending towards mild. Updated my spreadsheet with the new values. AVA has now increased by 45% compared to my first echo at OHSU and and my peak/means gradients have...

That does seem to be the case here in the Portland Metro area. I just can't believe that the other two massive medical groups here won't even establish care for a ACHD patient. Providence and Legacy staff hundreds of Cardiologists, but they told me that ACHD is so specialized they don't feel...

Well, I just learned that my ACHD Cardiologist is gone for good this time. I had seen him in March and we agreed on 6 months checkups/imaging. Called today to setup an appointment for September and was informed he has left the practice, so now there's one other doctor I can schedule with...

Yes, I'm interested to see if the trend continues, it certainly could be erroneous measurements. On the bright side all of my echo's have mentioned that I continue to be free of LVH, which I understand is something to be on the lookout for. My Cardiologist really threw me off with suggesting...

Just an update to further the mystery. Had an appointment a week ago with my Cardiologist to go over my most recent echo. He mentioned that I had proved their whole heart team wrong and they were certain I would need intervention within 6 months from my first appointment. He also told me he...

My Cardiologist said these exact words to me, and was backed up by the head of ACHD department I'm a patient at. Who knows if it's true, but I'm glad he told me this, helped me change my mindset around completely, and has led to me establishing routines that are much healthier.

Greetings, I've noticed something interesting in my TTE measurements over the past nearly two years. To start, I was diagnosed with severe AS and moderate AR along with a bicuspid valve when I was 12, but didn't have any knowledge of it until a couple of years ago at the age of 30. As a result...

I've been watching the Foldax news for a while too. It would certainly be nice for people who are contraindicated to Warfarin to have a long lasting valve choice that isn't the Ross procedure.

Thank you for the information, interesting to see him cite the two studies I mentioned. I'll have to have another consultation with Dr. Hamamsy in the future.

Aortic annulus size is very important for the autologous support technique which has shown impressive results out of Australia. 3mm could be the difference between the need to resize the annulus or not. Not sure if this is the technique Hamamsy uses... "The strategy for aortic root preparation...

Cleveland clinic, Baylor, University of Wisconsin Madison, and University of Washington all have dedicated Ross programs. I'm sure there are others as well. May be worth getting another opinion if Mt. Sinai isn't meeting your expectations. Also, Mt. Sinai is having quite an issue with staffing...

I haven't, nor has it been suggested by my Cardiologist, not sure why. I'll bring it up at my next appointment and see what he says.

I agree with this, would just be to allow me to be in a better position, but this remains undecided. Tissue in people my age isn't great period. ~~50% chance at reoperation at 10 years with a SAVR valve. It's been impressed on me reoperations in general are to be avoided if possible...

Indeed, spent many hours debating between the Ross and tissue valves. Just when I think I've figured it out I read something else and change my mind. I will say OHSU did put TAVR on the table as well, at least as a temporary solution, so we will see.

Nice to hear (odd as that sounds), I've followed many peoples stories on this forum and others and so often it seems pretty linear. I do believe this bothered/bothers me so much due to my career and education, just expected a similar level of precision as I perform in my job. For example, I...

These sets of measurements were taken from the same echo by two cardiologists at the same facility. My Cardiologist told me to ignore the official report as according to him nothing had changed. I tried not to get caught up on it but I can't understand how two people can measure normal and...

Was interested in that, paid out of pocket for a consultation earlier this year ($848 for 30 minutes of his time). Figured I could somehow get my insurance to pay for a surgery at Mt. Sinai, but the actual data on long-term outcomes of the Ross doesn't match up with what he's selling. So that...

Suppose I'll see if anyone has any specific recommendations in my state. I used the US News ranking and chose Providence, which is where I met that wacky surgeon. Was going to setup with their cardiology team initially but the surgeon was so off-putting I didn't, and the wait for a new patient...

Sure, know any in Oregon? My health insurance is fairly restrictive with their network. For example, the Cleveland Clinic isn't an option.

September 2020, had a telemedicine appointment/consult with a surgeon at Providence St.Vincent. I didn't know a whole lot at the time as the diagnosis was still fresh. After going over the condition he talked a bit about bio valves, then talked about mechanical valves. He stated "let me tell...