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This is very true and probably the biggest weakness of the Ross procedure. While I believe the modern Ross to be an excellent option the huge caveat is it's only a good option when done by one of a few surgeons worldwide. Some surgeons such as Dr. Starnes have been utilizing what is...

I didn't realize this earlier but I believe this recent publication is the third decade followup of the Ross portion of that randomized clinical trial. Median follow up of 24.1 years, median age of 38 at time of operation, and 71.1% free of reoperation at 25 years. Seeing as these operations...

There is one Randomized trial on the Ross vs homografts though it's not free. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)60828-8/abstract I believe it's discussed in some detail in this video. There will likely be much more Ross related material and innovation in...

I haven't had surgery. I was told I needed it imminently years ago, but my AS and potentially now my AR is improving without surgery. I found the suggestion to go to annual imaging interesting, as I've been biannual for years. It's an odd dichotomy where the professionals won't directly...

Had my appointment with my Cardiologist and it was interesting. The recommendation was to switch to annual imaging as she has gone back over all of my imaging and I'm firmly in the mild/moderate camp for stenosis and down from severe to moderate/severe on the regurgitation side. I intend to...

I believe he was just referencing the future they had anticipated. To expand on this, he told me during that appointment the whole ACHD team at OHSU believed I would need valve replacement within 6 months of my initial appointment. The initial appointment was in 2021, a couple of years prior...

Updating as I had a new cardiac MRI with contrast performed a couple of days ago. The news is better than I would have expected! A 14.29% reduction in my regurgitatant fraction, completely normal LV dimensions, and a 2mm reduction in ascending aorta dimension (compared to echo so this may not...

I sold on eBay for a few years while getting through college (thousands of listings), medical devices is one of, if not the most risky category to sell on eBay. I was surprised INR meters were ever allowed on the site, eBay has a pretty clear policy on medical devices requiring a prescription...

I agree, I've dealt with discrepancies in ventricle dimensions since the beginning of my monitoring. However, the gradients and AVA have been consistently trending down. Each echo my gradients have been lower than the previous and my AVA has increased.

Dr. Aldweib was my primary back in 2021, but when it came time for my second appointment he was gone for a few months which led me to see Dr. Broberg. Then Dr. Aldweib came back and like you I was told when trying to schedule my next appointment he was no longer seeing congenital patients...

Greetings I was a patient at OHSU until September of 2023, had appointments with their entire team, Drs Aldweib, Broberg, Khan, and most recently McGrath. Now I'm a patient at Providence, which took some effort as they have a policy to refer all congenital patients to OHSU. My experience with...

Given my experience over the past few years I have to believe there's something to the whole K2 thing. While this isn't something I've done much research into, nor do I have a favorite side in this debate, it appears there are a number of studies that have reached the 'warfarin causes increased...

I've been taking 500μg of K2 along with 5000IU of D3 and 125mg of vitamin E tocotrienols. I've also been taking a Hawthorn tincture (1mL) and drinking ~32oz of a hawthorn tea/infusion daily. I also take Cod liver oil (2 teaspoons) and coQ10 100mg. All of this I've taken every single day...

I also delved into the K2/D3 research and have been taking it for nearly 3 years daily. My experience has thus far been extraordinary, though I've made a significant amount of lifestyle changes along with the vitamins. Roughly 3 years ago I was rediagnosed with severe aortic stenosis and a...

Just came across this study excerpt on Ross procedure longevity, appears the entire paper is behind a paywall unfortunately, but the abstract is interesting. Long-Term Clinical and Echocardiographic Outcomes Following the Ross Procedure A Post Hoc Analysis of a Randomized Clinical Trial...

Just a small update. I managed to establish care with a different medical group here after a few attempts for a new opinion on my case (turns out the trick was to not mention the word congenital to the schedulers). My new and hopefully permanent Cardiologist is wonderful and went over all 5...

Just adding the relevant portions of my first and last echo's, which I should have done in the first place. Will be interesting to see if this continues. First Last

I've been taking 500mcg daily for a little over 2 years now. I take it with 125mg vitamin E tocotrienols, I recall reading a paper about the antisclerotic effects of both, and potential benefit when taken together, though I don't currently have said paper. I also take coQ10 and cod liver oil...

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...