65 yo BAV guy here

[gjkahn]

Hello.. Im a 65 yo man diagnosed with BAV in my late 30's. I've had echo's done and a stress echo about ten years ago.
So far (knock on wood) I'm able to maintain a very active lifestyle.. I hike two or three times a week (5-7 miles at a shot) and I feel well.
But I have this feeling of doubt that something is going to happen to me soon. Maybe its just unfounded fear, but its there.
I'd like to ask any of you whether you had any statistical data regarding when valve calcification, reverse flow or stenosis is most likely to manifest? What percentage of BAV people never need surgery?

Thanks.

 

[pellicle]

What percentage of BAV people never need surgery?

google gave me this on that question
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547216/
just some advice, always only click on proper links like NIH or journals, train Google you aren't interested in clickbait or fluff

oh, and welcome aboard

 

[pellicle]

oh, and just a final point of importance: you have to present to a hospital or a clinic to become known.

What this means is if you die and cause of death isn't then noted as being "severe stenosis of aortic valve" but is instead simply "heart failure" then nobody will know of that (and maybe even then nobody will know of that).

Next thing is how many people were never diagnosed and just died of something else first. perhaps because they were naturally inclined to be sedentary due to their heart making them feeling bad when exersize? You must know people not inclined to do any exersize but just aren't fat or unhealthy looking (modern car based western life seems to foster that).

Lastly (and unrelated to the question I was answering) modern approaches such as TAVI can offer you some intervention at a later age (over 65YO) that will (not without some risks, but simply different ones) allow you to get a new valve put in which I would suggest given your calcification profile getting you this far will likely mean you'll get at least 5 good years out of that (perhaps 10 or more) intervention.

Best Wishes

 

[ValveAdmin]

Hello and welcome. Thank you for joining.

 

[gpr100rs]

My history was similar to yours, but I had yearly echos for about 15 years before my surgery, which I had at age 63. The echo is the diagnostic tool of choice because it can measure the gradient, regurgitation, etc. When it came time for surgery, I felt fine, but my gradients, which progressively worsened over time, were terrible (peak 118, mean 84) and I knew it was time and my surgeon agreed. So, maintain your yearly echos and your cardiologist should be able to tell if you're reaching the critically stenotic stage and time for a surgery consult. All the best.

 

[thomas999]

If you are 65 now and diagnosed in your late 30s, imagine all the time behind you that you have been okay. That would give me a positive feeling or outlook over the situation. I would pay attention to what a good cardiologist would tell you. It appears that you are in good shape to be hiking that distance and frequency, and of course that is a good thing.

 

[Croooser]

Another vote for an echo. If you don't have a copy of a previous echo test results, then having one now can serve as a baseline. Then you and your Doctors can see if the disease is progressing over time as well as make a determination of which stage your present condition is at : Mild, Moderate, Severe.

HTH

 

[gjkahn]

In fact, i have been quite okay for over 30 years. I was under the care of a cardiologist when I lived in Central NY state, but since I moved to PA, I haven't been seen (for nearly 8 years).
I'm sure that some people with BAV would gasp at my negligence with respect to medical care, but I really have felt physically well.
I have an appointment in November to see a cardiologist, so I'm trying to rectify the situation.
Maybe I'm a ticking time bomb with an aorta ready to disect itself? I don't know.
Two years ago, I was fearful of the many "what ifs"... I decided to start vigorous hiking and to push myself. I didn't die and I gradually got stronger. I figured that my body would let me know if I was pushing too hard. This has been my philosophy ever since.
I guess in November, I'll have a better idea of whats going on with my BAV. For now, I will keep hiking.

Thanks for all the input so far. Its weird telling people that I have a congenital heart condition that only 2% of the general population has. Finding this forum is very helpful.

 

[KLS39]

Welcome to the forum. I hope your appointment in November goes well.

 

[dornole]

Glad you made that appt, now keep it! Enjoy your feeling of good health, but verify with echos. . . Best way to keep you healthy for many hikes to come!

 

[ValveAdmin]

I have an appointment in November to see a cardiologist, so I'm trying to rectify the situation.

Good luck with your November appointment.

 

[gjkahn]

Thank you for encouragement. I just received a copy of all my old cardiology records including previous echocardiogram results so i have a good baseline for the appointment.

 

[tom in MO]

In fact, i have been quite okay for over 30 years. I was under the care of a cardiologist when I lived in Central NY state, but since I moved to PA, I haven't been seen (for nearly 8 years).
I'm sure that some people with BAV would gasp at my negligence with respect to medical care, but I really have felt physically well.
I have an appointment in November to see a cardiologist, so I'm trying to rectify the situation.
Maybe I'm a ticking time bomb with an aorta ready to disect itself? I don't know.
Two years ago, I was fearful of the many "what ifs"... I decided to start vigorous hiking and to push myself. I didn't die and I gradually got stronger. I figured that my body would let me know if I was pushing too hard. This has been my philosophy ever since.
I guess in November, I'll have a better idea of whats going on with my BAV. For now, I will keep hiking.

Thanks for all the input so far. Its weird telling people that I have a congenital heart condition that only 2% of the general population has. Finding this forum is very helpful.

My cardio and surgeon said a BAV is like a cliff at the end of a slope. You slowly deteriorate but then it's over the edge and down you go. That's what they told me about my situation at the last echo before scheduling surgery. The phrase my cardio used, "You don't want to experience the syndrome known as sudden death." Get your echos at the frequency your cardio recommends. I had no symptoms until after surgery was scheduled due to an echo. Then it was a single spell of severe vertigo. After removal, the surgeon said my valve was ready to fail at any moment.

I read an article about autopsies where the cause of death was BAV, but unknown at the time. The age range of deaths was 16 to 80 with the median at about 55.

 

[vitdoc]

Bicuspid aortic valves can do one of three things they can remain relatively OK , they can tighten up impeding the outflow of the heart , or they can loosen up and allow a reflux of blood to the heart from the aorta. Or a combination of the last two.

The heart muscle can compensate to a degree for a period of time to all of these scenarios. For tightening up the muscle will get thicker(hypertrophy) for reflux it will stretch (dilate). So someone can be relatively asymptomatic for years depending on the severity of the valve disease.
Some of these changes caught early enough are reversible some are not if they have been present too long. The trick of deciding on surgery is when it is felt that the damage or potential damage exceeds the risk of surgery.

Finally the heart rhythm may develop episodes of ventricular tachycardia. These are abnormal rhythms generated by heart muscle that is stressed. So one way of egress from life is the sudden development of ventricular rhythms that may degenerate into ventricular fibrillation. Without electrical cardioversion applied immediately that can lead to sudden death.

So exercising is great to a point but actually might exacerbate heart problems if the valve is deteriorating. Periodic echocardiograms are useful in following these sorts of heart issues. Not following them and just depending on how one feels is not the ideal why to go.
Good luck on the evaluation, probably the sooner the better if it has been years since the last evaluation.

 

[gjkahn]

Thank you for the information. It's helpful to me to understand the possible mechanisms of degradation of my BAV.
I'll certainly ask my cardiologist about whether my exercise regime is appropriate or not and if necessary I'll back off the hiking a bit.
There's no substitute for first hand experience and many of you have walked the walk already.