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  1. Deidra

    New member with the usual dilemma

    It's also quite easy to find studies where mechanical valve replacement results in life expectancy similar to the general population: https://www.annalsthoracicsurgery.org/article/S0003-4975(07)00667-4/fulltext Two hundred six BAV patients (mean, 53 ± 14 years, 84% male) underwent composite...
  2. Deidra

    Feeling a whirlwind of emotions—sadness, confusion, bewilderment, …, etc. after my recent “Bubble echo” test, which uncovered a hole in my heart.

    Sorry to hear about the oxygen level issues, that sounds worrying. Here's some reassuring data about PFOs, which are very common. They found a small PFO on the transesophageal echo they did during my recent surgery :) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723385/ The frequency of a...
  3. Deidra

    New member with the usual dilemma

    There's a video from 2y ago linked right below it that goes over very similar info lol
  4. Deidra

    New member with the usual dilemma

    Makes you wonder how many of those deaths could have been prevented or at least delayed if patients were better at compliance and self-management.
  5. Deidra

    New member with the usual dilemma

    As someone who had a mechanical valve installed a month and a half ago, I can say that so far the warfarin has been a piece of cake, even though I am going to a clinic right now because the US requires that for a few months. It's just a half hour or so out of my week. With self-testing it would...
  6. Deidra

    New member with the usual dilemma

    Huge agree with this. There is no 100% consistent way to detect underlying connective tissue disorders, as the full range of genetic mutations that cause them is unknown. I tested negative on an aortopathy genetic panel, and yet clearly I had some kind of connective tissue disorder that is...
  7. Deidra

    New member with the usual dilemma

    I don't have any info on surgeons in Europe or more info on the Ross or Ozaki. I did just want to say that it's important to remember when reading studies about mechanical valve complications that they almost always don't account or adjust for ACT compliance or time in therapeutic range. There...
  8. Deidra

    New Member.

    Yeah this is extremely accurate. I was kinda shocked when I found out that "young" in studies on heart valve patients means younger than like 55-60. Heart surgery is very common in those older than 50, with great results.
  9. Deidra

    New Member.

    Welcome to the forum. Open heart surgical valve replacement has the best long term outcomes. Surgeons and their teams are very experienced with it and its very effective and safe. No info on your age/other health conditions, but there are stories on this forum from all sorts of people about...
  10. Deidra

    New member with the usual dilemma

    Agreed. Also agreed in that progress is exciting. To clarify, the point of my post was "if you match this clinical description (young, male, pure AR, dilated annulus), be wary of the Ross procedure (unless you have access to these three or four guys who do it very well.)"
  11. Deidra

    New member with the usual dilemma

    I think it's important to tease out what patient qualities these surgeons are selecting for, not just who the best surgeons are. That is very relevant to us. As someone who did have pure aortic insufficiency and a dilated root, I was 100% confident that the Ross wasn't a good idea for me. My...
  12. Deidra

    New member with the usual dilemma

    The following is my views based on my understanding of the options. You're already familiar with the upsides and downsides of mechanical and bioprosthetic valves. The benefits of the Ozaki and Ross is that they use your own tissue, and thus don't require lifelong anticoagulation therapy...
  13. Deidra

    New member with the usual dilemma

    This is absolutely how I felt too. Once the surgery was scheduled a lot of my fear and apprehension just washed away. I was confident in my surgeon and his team and I was right to be. For us its a huge life-changing event, for them its just another day. Absolutely this. There were nine people...
  14. Deidra

    New member with the usual dilemma

    The AHA guidelines recommend surgery to replace the aortic valve for patients with symptoms and severe aortic regurgitation, and patients with severe regurgitation and an ejection fraction less than 55%. However, they also recommend surgery to replace the valve if a patient has moderate or...
  15. Deidra

    50M, severe regurgitation, confused about symptoms?

    Fair viewpoint. In my view, the reason for getting surgery even when you don't have obvious symptoms is because by the time symptoms do occur, there may already be irreversible damage. With chronic aortic regurgitation in particular, even when severe, you can have full exercise capability...
  16. Deidra

    Surgery coming up next week

    Welcome to the other side! You're in good hands. You got this!
  17. Deidra

    50M, severe regurgitation, confused about symptoms?

    This is a great way to look at things. I kept reminding myself about this before surgery. There is a very effective and safe solution for our condition. For many diseases that isn't the case at all. Yes, we trade our original problem for the problems associated with prosthetic heart valves, but...
  18. Deidra

    50M, severe regurgitation, confused about symptoms?

    For point number 1, I think there really hasn't been a scientific consensus on what causes these changes other than genetics. But as pellicle has pointed out before, the progression of a disease/rate of failure is not always linear. Sometimes it's fine for a long while and then suddenly starts...
  19. Deidra

    26M 5.1cm Aortic Root Aneurysm + Bicuspid Valve Surgery

    100% seconding this. You should make decisions based on what options are available now, not what options may or may not be available in the future. The newest mechanical valve (On-X) is basically a slightly "improved" version of the St. Jude, which was created in 1977. The only "new technology"...
  20. Deidra

    50M, severe regurgitation, confused about symptoms?

    This is the best approach. There is no benefit in putting it off. In fact, I think you stand to gain quite a bit by pushing for the surgery earlier. Chronic aortic regurgitation is insidious because the heart has time to adapt to changes, which is why many people with aortic regurgitation are...
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