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Dakota99

Member
Joined
Nov 11, 2016
Messages
6
Location
Saint Paul MN
New person to this site, I was recently diagnosed with moderate 1.1 Aortic stenosis from BAV
Wondering if anyone has any input on how long it took them to get from this point to serious stage
 
Others here know a lot more than I do, but I think it is pretty well established that it can vary a lot how long it takes to progress, and there isn't much in the way of predictive parameters. I have read that high cholesterol levels seem to accelerate the process.

It's important to keep those appointments with your doc so they can monitor the progression.

I've only gotten the echo done once (I just learned about my AS about a year ago -- regular tricuspid valve with aortic sclerosis, which is weird at my relatively young age of 43). When I asked about progression rates, doc told me that I'm "a graph with only one point on it", and he really couldn't say much until after the next echo or two. Even then, sometimes people don't progress for a time and then suddenly progress quickly. There doesn't appear to be a lot of rhyme or reason to it.

My doc even told me "it may never progress", but short of sudden demise I don't see much talk of AS stabilizing. Everything I've read says that it always progresses. Then again, this doc also told me that my statin would freeze CAC progression, which everything I've read says is NOT true at all (there was some hope in the early 2000s that this would prove to be the case, until large studies dashed those hopes).
 
Hi Dakota - welcome to the forum. Not sure what the 1.1 means - is it your valve area size ? Aortic stenosis is expressed as the pressure gradient so you need to know what your pressure gradient is.

I was diagnosed with bicuspid aortic valve when I was 25 - well a cardiologist said it was that from the sound of the murmur but echocardiograms weren't so good in those days so couldn't prove it, but the fact that I had an easy to hear murmur would have meant that the valve was stenosed to a degree. Fast forward to when I was 53 and a gastro doc who happened to hear the murmur when he was listening to my abdomen said I should see a cardiologist again. Echocardiogram then showed I had moderate stenosis. I was followed with yearly echos then. When I was 60 the stenosis reached severe/critical with valve area size 0.9 and I was referred for surgery. I was completely asymptomatic all the time, did a six mile walk and lifted weights the day before surgery. It's really difficult to say what the progression of your stenosis will be, even when you have annual echos the gradient can vary in how it climbs - usually a sudden sharp increase indicates time for surgery is nearing. Plus some people have symptoms which can be an indication that their heart is being 'damaged' by the stenosis. So in answer to your question - it took me from age 25 to age 60 for me to get to "the serious stage". If I'd never had a doctor listen to my chest when I was 25 (I had bronchitis which is why he listened) I might have said it took from age 53 to age 60 :)
 
In general, very roughly, and noting that there are many exceptions, what I have read leads me to believe that progression from first diagnosis to needing surgery is (again very roughly) about ten years.
 
Hi, Dakota. Welcome. You've come to a good place. I was diagnosed as a child and did not have surgery until I was 31. I am now 43.

I was born into a BAV family. There are at least 4 of us with this congenital defect. My Mom is 65 and has not had surgery. She is fortunate in that her valve has not had any changes. We see the same cardiologist 😀

My uncle had his aortic valve replaced in his early forties with a St. Jude mechanical valve. He died from lung cancer in 2012 due to exposure to agent orange in Vietnam. He was 68 years old. His mechanical valve was still clicking along when he died.

My brother passed away two days shy of his 15th birthday in 1991. He died during his 4th open heart surgery.

I'm sharing all of this to illustrate that there are just too many unknowns. My Mom has the same heart condition as her two children and may just luck up and not require surgery. I pray she doesn't. Her diagnosis was decades ago 😀
 
For me it was about 6 years I think from a murmur first being picked up and thus a scan revealed BAVD , never followed up in that time until last June when I knew it wasn't right so went to GP , and then the shabang to having it replaced.
 
Welcome Dakota. Not much help on your question as I am not very versed in all the procedures and stats but keep using the search field and you are bound to find a lot of information. All, most,, or some of us know how you feel. Just had my second AVR in under 5 years and still ask myself what is going on here?
 
Nocturne,
I'm 47 years old. My Cardiologist just said that they check it again in a year or sooner if needed.
They said there was some enlargement of the aorta and what they called heart thickening

thank you
 
Hi Dakota, and welcome to The Waiting Room - the virtual room where many of us await our own turns at valve surgery. My own case was similar to yours. I was diagnosed at age 51 with moderate-to-severe AS, with a valve area right about 1.1 cm2 (square centimeters). From that point on, it took my valve about 12 years before I finally decided I was ready for surgery. I probably could have squeezed another year or so out of it, but I was tired of being tired.

That said, we are all different. Your case may or may not act anything like mine. I had been a recreational runner for many years before diagnosis, and continued to run right up until surgery at age 63. My cardio and I both feel that the long-term exercise regimen helped me to remain asymptomatic for those many years, and we feel that had I not been in better-than-average shape, I would probably have had surgery sooner. One thing my cardio told me about AS, which I initially thought was a joke but turned out to be true. He said "I don't have to tell my AS patients when to have surgery. They all tell me, and they tell me before they are in any danger." What he meant was that AS generally does not cause sudden death (only a small fraction of a percent of these valves suffer catastrophic failures prior to surgery). Instead, the patient eventually develops symptoms that become bothersome enough that the patient says "It is time." Remember, the cardinal (red-flag) symptoms to watch for are shortness of breath (SOB), syncope (fainting) and angina (chest pain). Research studies show that once a patient begins to present any of these cardinal symptoms, if they do not have surgery they typically do not survive longer than a few years.

To make a long story short - try to just live your life. Be sure to have your scheduled cardio consultations and echo's, and keep track of the valve's pressure gradient and valve area. Also keep track of how you feel. Have the dialog with your cardio about who will decide when it is time to operate and how that decision will be made. Don't worry about which valve you want, as there may be new and better choices available by the time you need one. Then put it out of your mind until the next appointment. Unless you present symptoms, there is nothing to be done between appointments, to go back to your regularly scheduled life. Your valve may or may not get worse, but worrying about it isn't going to change anything.

Hang around a while. Ask all the questions you like. The folks here are about the most knowledgeable and sharing people I've met, and no matter what you run into, there is probably someone here who can help.
 
Agreed. I have far less experience than almost anyone else here but another thing I have gathered (which should be obvious) is to take your heart health very seriously from this point forward. Get your cholesterol checked thoroughly -- maybe look at the nitty gritty details like Apo-B and LPA. Maybe get a CT scan and get your CAC score for peace of mind, although you run the risk of getting some very ugly news that will give you anything but (but it will get you on a statin if you need one).

And -- while I know personally that this is a major struggle -- try not to worry about it too much. Excessive worry is nonproductive and steals time and joy from your life. If you can figure out how to stop, please let me know. :^/
 
Nocturne;n870450 said:
Get your cholesterol checked thoroughly -- maybe look at the nitty gritty details like Apo-B and LPA.
Now you're talking. Homocysteine, CRP yada yada.
There is overwhelming research to suggest that plaques regress below an LDL 1.8 mmol/L (70mg /d/L), unless there are other risk factors (What this means is that you should aim to get your LDL even lower).
You can lower your Lipoprotein (a) with Niacin.
Register and log into the PCSK9 forum
 
Nocturne;n870450 said:
And -- while I know personally that this is a major struggle -- try not to worry about it too much. Excessive worry is nonproductive and steals time and joy from your life. If you can figure out how to stop, please let me know. :^/

Nocturne - I maintain what is left of my sanity by living as if "Stress is only real if you accept it." It is a lot like the guilt many of our parents used to try to manage us when we were younger. As long as we let it work, it worked. Once we figured out that if we chose not to accept guilt, the control faded.

So, for the last 15 years or so, my mantra is "I only worry when I have to."
 
hello,

I havent been on here in awhile. i had my valve replaced years ago. wondering if anyone had seen the FDA warning on Abbott Trifecta valves
failing early recently.
 
Morning

now that you mention it I did see something about that. So I entered your question into my secret magic portal (google) and got:

Abbott Trifecta Valves: Potential Risk of Early Structural Valve Deterioration- Letter to Health Care Providers​

https://www.fda.gov/medical-devices...ctural-valve-deterioration-letter-health-care
Information from published literature suggests a higher cumulative incidence of early (five years or less) SVD for Trifecta valves compared to other commercially available surgical bioprosthetic valves.

So basically SVD a bit earlier. Sorta reminds me on why I always say to a "younger" patient to seriously consider getting a mechanical.

Oh, and in my view "younger patient" is the bottom one, I'm not a surgeon

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Hi Dakota.

Welcome back to the forum.

Regarding your question about Trifecta, did you get a Trifecta valve? If so, how is yours doing?

It looks like you started this thread about 6.5 years ago, at which time you indicated that you were 47 years old and recently diagnosed with aortic stenosis, asking how long it took to go from 1.1 to the serious stage. BTW, it took mine about 18 months for my aortic valve area to go from 1.1cm2 to severe, at which point I had surgery. You indicate that you had your valve surgery years ago, so I take that to mean that yours did progress eventually to severe? Or was it one of the other things you mentioned that drove your surgery, aorta diameter, heart thickening?
 
Hello,
I had my valve replaced in 2018 with a Abbott (st jude) TFGT-25A valve. just wondering if I should ask my cardiologist about this FDA warning.

Thank You
 
Hello,
I had my valve replaced in 2018 with a Abbott (st jude) TFGT-25A valve. just wondering if I should ask my cardiologist about this FDA warning.

Thank You
I would suggest that yes you should have this discussion with your cardiologist. You have the Trifecta valve. They might want to watch you a little closer with more frequest follow up echos.
 
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