Jessica's Journal
Pulmonary Stenosis, Joined March 16, 2025
Pulmonary Stenosis
Joined March 16, 2025
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I am from: TX -
My surgery date is: December 12, 2017
Bravo!
(The photo is a picture of me on my 25th birthday last month. A quarter century with a CHD!)
One interesting point is what you want the opinion of cardiac surgeons as well as cardiologist about timing. I found cardiac surgeons to be WAY MORE dialed into the nuances of surgery than the cardiologists who were back office dudes.
I'd say you want to be with Cleveland Clinic, Mayo, Mt Sinai - one of the greats to maximize all of this. It is worth the effort!!! Best of luck.
I agree with getting a second opinion.
I wanted to reach out and share a bit from my experience, since I'm also in my mid twenties with a history of valve surgery. I had my Ross Procedure, for aortic stenosis, two and a half years ago when I was 24, so the whole process of monitoring and decision-making is still very fresh for me.
From my understanding, it’s often wise to push a valve replacement, especially when you're young, until it's truly the right time. The key thing I've learned is that the "right time" isn't just about waiting until you feel terrible with severe symptoms. A huge piece of the puzzle for the doctors is the objective data they get from MRIs and echocardiograms. They're closely watching for signs of strain on your heart, particularly looking for right ventricle hypertrophy or enlargement.
This is where having a fitness routine is such a brilliant way to evaluate things yourself. If you’re consistent, you get your own objective data. You might notice your heart is slowing you down just a bit or that your recovery is taking longer.
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I wanted to reach out and share a bit from my experience, since I'm also in my mid twenties with a history of valve surgery. I had my Ross Procedure, for aortic stenosis, two and a half years ago when I was 24, so the whole process of monitoring and decision-making is still very fresh for me.
From my understanding, it’s often wise to push a valve replacement, especially when you're young, until it's truly the right time. The key thing I've learned is that the "right time" isn't just about waiting until you feel terrible with severe symptoms. A huge piece of the puzzle for the doctors is the objective data they get from MRIs and echocardiograms. They're closely watching for signs of strain on your heart, particularly looking for right ventricle hypertrophy or enlargement.
This is where having a fitness routine is such a brilliant way to evaluate things yourself. If you’re consistent, you get your own objective data. You might notice your heart is slowing you down just a bit or that your recovery is taking longer.
That’s exactly what happened in my case. I had managed aortic valve stenosis my entire life, getting an echocardiogram annually or every other year. The final decision was made when a failed stress test and some critical echocardiogram values lined up with the notable but subtle symptoms I was starting to feel. Once that objective data was clear, things moved very quickly—I was in surgery within two months of that failed stress echo.
It seems counterintuitive at first, but you can really only have a few sternotomy procedures before it starts getting more dangerous. Every year you can safely buy with your current valve is incredibly valuable. The key word is "safely"—meaning waiting, but not so long that your right ventricle sustains damage.
Lifetime management of valve disease is key. It's a long-term strategy that you, your family, and your doctors will navigate together, based on the hard data from scans, how you're feeling, your life expectancy, and the lifestyle you want to lead. Sorry for my whole novel, I like to share what I’ve picked up along the way. Since I now have a donor pulmonary valve, I will almost certainly need an intervention in the next 20-30 years or sooner. I plan on two transcather valves to get me to maybe my late 50s or 60s meaning valve in vale procedures potentially then a potential open heart procedure to do a full replacement. I thought through this timeline with my surgeon and cardiologist before my valve replacement as the lifetime management portion of the conversation. Please message me if you have any questions. I’m not a doctor so I don’t wan this to be taken as medical advice just some tips from my own personal experience.
Sue