Rate of progression of stenosiss

[Guest]

Hi All! I was diagnosed with a BAV with aortic sclerosis (aortic valve area of 2.01 cm, peak gradient 18 mmHg) at the age of 21. At that time, there was calcification noted on the valve already and my physician made a prediction of "30s or 40s" for a valve replacement. I am well aware that any prediction for rate of stenosis of a BAV is loose at best, especially when it is not officially "stenosed" yet. Many people live an entire lifetime with a BAV without stenosis, so who is to say that I won't either?
I lead an active lifestyle. For the past year I have been doing Crossfit style workouts. I have worn a polar monitor for the past 6 months of that with rates peaking at 200-210 with averages in the 155-165 range. All was good and well for a while, however I have begun having nausea/vomiting after particularly intense workouts. In the past 3 weeks, I have had 2 episodes of chest tightness associated with shortness of breath. And then there is the fatigue. By Fridays (I do cross fit M-F), I am zonked--not a sleepy tired or muscle fatigue, but real deal hit-me-with-a-Mack-truck fatigue. There is hardly any possibility that my valve could have moved from 2.01 cm to a severe (or even moderate) degree of stenosis in the past 1.5 years (diagnosis was Dec 2012). My doctor wasn't going to even follow up with me until 2016. . . I feel foolish asking for another echo to re-evaluate the valve, but I feel that I need to know so I can back off workouts if necessary (though I don't want to)!

I would love to know how quickly y'all's valves are changing? Anyone else out there experience symptoms prior to reaching severe stenosis?

 

[Ryan CA]

It may not be valve area at all that is causing the problem. It is very likely regurgitation. Go see the doctor man...don't mess around. I had my aortic valve replaced in June. A year ago I was doing 20-30 mile mountain bike rides. By March of this year, I would finish a bike ride and experience the same "real deal hit-me-with-a-Mack-truck fatigue" that you have discussed. My valve area had changed slightly but the real difference was regurgitation. I was basically having 30-40% of the blood from each heart beat flowing back into the left ventricle.

 

[big_L]

I'd get it checked out. The echo isn't anything to get through and you need to know. The classic diagram that the cardiologists see in texts for stenosis mortality shows a steep dropoff once you reach a certain point.

 

[MrsBray]

Hi there! I was diagnosed in 2003 and had AVR in 2014. I was 32 at diagnosis and told "60s or 70s"! My AVA was stagnant for many years, then started declining slowly, and then everything started tumbling downhill like a snowball. In Jan 2013 my AVA was 1.1, in August I was .85.

Don't ever hesitate to call your doctor if your symptoms are changing. Yes, it can change that fast!
-Meredith

 

[cldlhd]

Scary to read how quickly it can progress. I'm 45 and I was diagnosed with BAV this year, they sat I have no signs of any stenosis so who knows . I'd get it checked out.

 

[Catpax]

Hi! That was me that posted up there. . . and added an "s" on stenosis in the title (typing quickly). I did call my doc and he is doing an echo this Friday, it will be good to know. Additionally, he placed a 30 day event monitor (talk about being wired up. . .), though I suspect it will only show sinus tach. It is amazing how fast my HR takes off and how hard it beats in my chest. The other day, I held a 10 lb baby over my left shoulder walking up 12 stairs. When I stopped at the top, my heart was beating so hard and fast that I got this sensation of breathless panic as the baby's weight suppressed the force of the contraction of my heart. I had to find someone to pass her off quickly.

 

[Glen Swan]

Hopefully things will work out.

I know from all my talks with the docs, they have noted several times that they cannot really determine when, they just know the where. That does not mean any predictions based on experience are any less relevant. It just means it's not an exact science just yet. If you're feeling symptoms that are making your life that much more complicated, then you owe it to yourself to get them checked out, which sounds like you are this week.