Matthew's Guestbook

Hey Max! Sounds like maybe this was a recent diagnosis? I remember how frightening and disorienting and depressing my diagnosis was, even at 15 when I didn't really understand the implications. I'm sorry you have to carry this burden - we all understand. If I recall, I was moderate to severe regurgitation from the beginning. I never had symptoms that I noticed outside of the strong pulse effects (abdomen, headboard hitting the wall, pulse in lips and thumbs, slow heartrate, high pulse pressure...) and participated at a high level in sports the whole time, though it probably affected me somewhat. I never had stenosis. It was missed on all my physicals and was caught on an echo my mom got for us because of a different family cardiac history. I was first followed by a pediatric cardiologist. I hit adult size early. I was 6'2" 200 lbs by 8th grade and by the time I was 19 and still with pediatrics, they told me it was time for surgery as my regurgitation was moderate-severe and my heart dimension on echo had grown a lot. I was under general activity restrictions - I was not allowed to lift over 100 lbs or participate in high contact, strenuous sports like football or wrestling, but I still probably pushed it too hard and progressed the disease somewhat. I had a second opinion with adult cardiology and they said it wasn't time. They attributed the changes to my continued development as just a big, barrel chested guy, and I was under watchful waiting for the next 15 years. That whole time, my dimensions (ventricle wall, ventricle size, aortic rood diameter) creeped little by little every year, but I remained stable and asymptomatic with no stenosis. during that time I worked a ton and had enormous stress and left a very sedentary life and gained a ton of weight. I decided that was going to eventually kill me and I turned things around and found my athlete again and started doing strenuous cardiovascular exercise routinely with no weightlifting or straining. That changed everything for me. I was able to progress and train with no symptoms, and lost 80+ pounds and found a new life. A few years later the conversation I was waiting for eventually happened. "it's time to start thinking about doing surgery" It was nothing sudden, nothing emergent... but it was time. My aortic root had finally creeped to the threshold for intervention, pulling the valve wider and making my regurgitation more severe. Still no noted symptoms and I continued to exercise up until a few days before surgery. Maybe I did have symptoms, but I had lived with them so long, and they had come on so slowly, that I couldn't point to anything. And perhaps my aggressive cardio pushed things there a little earlier than it would have if I had remained sedentary, but obviously that carries it's only serious cardiac risk and I wouldn't have had it any other way. My provider is at UW-Health in Madison, WI, who had the capabilities to do a Ross procedure, as well as a David procedure. However both those programs were in their infancy so I decided to investigate elsewhere as being so young, this has to last a long time. I had second opinions at Mayo, Cleveland Clinic, and Mount Sinai. Ultimately I went with Mount Sinai since they offered high confidence for repair, and could divert to Ross during surgery, something the others couldn't offer. Interestingly, Cleveland Clinic said I couldn't get anything but a mechanical valve. Ultimately Mount Sinai repaired the valve last January. I am beyond grateful. I was told that as long as your valve doesn't have stenosis, there's a chance it can be repaired. It's a matter of someone who has the experience and confidence required. There are several types of bicuspid valves. Mine was the most common, and I was told it was textbook repair eligible, so I was lucky. From what I understand, the activity restrictions recommended in our disease state aren't so much evidence based as they are intuitive (though I could be wrong about that). Nevertheless, I think it matters a whole lot more that you maintain a healthy weight, healthy blood pressure, reduce stress, don't smoke (!!!) - you know, the basics. What surprised me most about the management of the disease it's that it's lifelong. I'll likely need surgery again. I just hope to have lots of years where I can just live life and not think about it. I think that's sort of the point. Work with your cardiologist. I ultimately decided that even if exercise made my disease progress just a little faster, it was worth it. I needed to do that to live a healthy happy life, and if it made surgery come a year earlier, so be it... I was going to need it eventually anyway. I also understand that it's typical for people with no stenosis to be asymptomatic. I don't know if stenosis eventually happens, but it always seems the story for most people is they start having symptoms when they're 50+ and they find a stenotic valve. Maybe there's something fortunate about having severe enough regurgitation to find it early. I think the only thing really shown to prevent stenosis would be to avoid taking to much calcium (tums), but intuitively things like smoking and high cholesterol would be contributors. Reading my surgical report, they did find some small areas of calcification (stenosis) on the surface of the valve, but they were able to scrape it off during the repair. The big thing was there was no stiffening on echo to suggest it. I'm so glad you caught it early. I think so many of these get missed because it's so typical for guys our age to just never go to the doctor until there's a problem, and in a disease state like ours - if you're waiting for symptoms, damage has likely already been done. I know how much this sucks, trust me. But information is always good. Knowing about it doesn't change anything - it was there anyway. And knowing gives us an opportunity to have control in a situation that we didn't choose. Let me know if I can help in any other way. This has been a lifelong journey for me - for most of us here - and it gives the struggle more meaning when we can use our experiences to help others out. This community did the same for me since I was a teenager.

Thank you so much for your message and explanation. Yeah, i was just recently diagnosed after my pcp heard a murmur. I guess im the first one in the family with this, no hx of Cardiac issues. :/. definitely going thru a trip of acceptance and lifestyle modifications as you did. 🙏

I think it depends. My understanding is a valve needs to be symmetrical in order for TAVR to work. I think it depends on what type of repair can be done on whatever type of valve you have. The benefit to me was that the Ross procedure could be done after this one.