BAV—Rate of Progression

[Jmprosser.lab]

Hi everyone—

Was wondering if you knew how un-likely it is for a leaking BAV to progress from moderate to severe in 1 Year? I’ve been moderate since 16 and am now 29, but was just curious. My cardio said it’s VERY unlikely.

 

[pellicle]

as far as I know, there's no rules, which is why one goes for checkups.
If progress isn't what you think is right get another study done to double check that result

 

[ExC.Andrew]

I personally had murmurs since '89 (when I was advised to check with a doctor at the blood donation center). I never thought much of it and went happily along till about 2008. It's only in 2014 that I had a mini stroke and when the docs discovered the cause was congenital BAVD, and AFIB.

In retrospect, I know that too much stress and not enough regular exercise contributed to the worsening, to the point I had to have an aortic valve replacement in 2017. From '89 till about 2003 I was in top physical condition, didn't have to worry much at all (and didn't know I had the condition BTW).

In short, I would strive to keep a healthy mind and body. Stress or worrying about the condition isn't helpful; just monitor the condition, and you'll be alright. Technology improves all the time, so it's to your advantage to push an operation (if needed) as far into the future as you can.

 

[Keithl]

When I was first diagnosed with BAV many years ago I did not worry about it, when they diagnosed the aneurysm in 2007 I started to worry and doubled down on healthy life style. What I also found out is that a large percent of BAV people will get an aneurysm eventually. My aneurysm was checked initially every 6 month then every year. Last year my cardiologist was like go get it fixed. Went to surgeon and he said I have been 4.7-4.9 for so long just relax and get scanned every 3 years. I did not like the idea of 3 years so went earlier this year at the 2 year mark of my last MRI. And what do you know I am at 5.1 and time to get fixed. With the progression of technology I would just live a healthy (as possible for you) lifestyle and just have everything checked every so often. Also talk to your DR about Losartan as a preventive measure. There are some reports that Losartan help slow the progression of an aneurysm, so if you don't have one maybe it will help prevent one or at least slow down the start of one. I suspect I was stable for years due to Losartan and keeping my BP in the 110/65 range.

My BAV was always listed as moderate over the years, one thing the surgeon said after my surgery was that my valve was worse than they thought it was severe. I had no real symptoms of a severe BAV, but in hindsight I don't breath as hard while exercising as I did before, but again nothing substantially different so I am not sure what qualifies as moderate vs. severe. Either way I am 11 week tomorrow ad feel great, pretty mush 99% back to normal. Damn top sternal wire is a bit annoying and I suspect I will have it removed next year, possible also the second one as well since I feel it pinching right next to my sternum periodically.

Take it from #1 scaredy cat about this initially stay healthy and it goes rather easy recovery for me was a breeze. I am 58 a little over weight, but do carido 4x a week and eat moderately healthy.

 

[Gordo60]

Also talk to your DR about Losartan as a preventive measure. There are some reports that Losartan help slow the progression of an aneurysm, so if you don't have one maybe it will help prevent one or at least slow down the start of one. I suspect I was stable for years due to Losartan and keeping my BP in the 110/65 range.

Thanks for the info.

According to latest research Losartan, despite earlier research suggesting it slows progression of aortic aneurysms, has proven false. That said, since I’ve been on Losartan over three years now my root aneurysm that was growing 1 mm a year has been stable. Whether this is a coincidence or it starts growing again time will tell.

The biggest problem with Losartan is the worldwide shortage from what I understand. My supplies are running down and I can’t get anymore at the moment. I really want to keep taking it so hope the supply issue gets sorted.

 

[Keithl]

Yeah all th bad losartan on the market, I missed most of it. I had no issues getting my dose and then have been on a beta blocker since surgery. Debating staying on the beta blocker or going back to losartan, but if I go back will wait for supplies to catch up. Not to get political, but this is what happens when we allow th Chinese to manufacture our medicines with little or no oversight. I may start opting to pay more for the name bar ads vs. generics.

 

[tom in MO]

Hi everyone—

Was wondering if you knew how un-likely it is for a leaking BAV to progress from moderate to severe in 1 Year? I’ve been moderate since 16 and am now 29, but was just curious. My cardio said it’s VERY unlikely.

I was told by my surgeon and cardiologist that BAV stenosis can go along fine for years and then begin to fail pretty quickly. For me it was an echo every 5 years then once a year for 2 years and then surgery. Follow your cardio's schedule for your echos and you should be fine. If you are getting them every year, you should make sure you know the symptoms of it getting worse and don't skip echos. If you don't hear back from your cardio about your echo, don't assume it's OK, call them and make sure you didn't slip through the cracks.

I was asymptomatic when I was told I needed surgery after my yearly echo, but I was told I needed it within 3-months. Within the month I had my first bout of dizziness and was no longer asymptomatic. When my valve was removed, the surgeon said it was pretty close to kaput.

You cannot stem BAV stenosis by healthy living, eating or exercise. It's genetic and out of your control. For overall heart health you should control your BP, cholesterol and exercise but that won't stop your BAV stenosis.

 

[Duffey]

Hi everyone—

Was wondering if you knew how un-likely it is for a leaking BAV to progress from moderate to severe in 1 Year? I’ve been moderate since 16 and am now 29, but was just curious. My cardio said it’s VERY unlikely.

You’re suffering from regurgitation with your valve rather than stenosis? Are you having symptoms that have caused you to question the cardiologist’s answer?

 

[Dr_Bear]

I had my BAV aortic regurgitation diagnosis at 21 after a bad round of palptiations. Back then i allready had a large LV, a 55% Ef and moderate-severe regurgitation. I was told AVR is close, maybe one-two years max.
I got to a regular echo exam every 6 months or so and the numbers stayed just about the same. Year after year.
I am 37 now, progressed to anual MRI scans as they are the gold standard for this and still numbers are the same. No change. Sometimes they say moderate, sometimes they say moderate-severe...
All theese years i did all i wanted to. I am prone to anxiety so being too carefull makes me really anxious. I was and still am a heavy smoker, did a lot of sports, had huge amounts of stress and still no progression ,no aneurysm (i am literally a giant and my aorta is just 4.2)
Being a MD, i know i am not the regular BAV patient and this DOES progress but to answer to the OP question - you just dont know I was told "surgery next year" and 16 had passed since then without surgery.
Even now, everytime i see my surgeon he wants to change it, i say " let's wait for the next MRI. I will do it, if there is at least 5% change in any parameter". he laughs and says " then i'll see you next year. But stop smoking!!"

Bottom line - outside of statistics is just down to each and every person out there and their personal genetics, life choices and luck. You live you life and do your regular check-ups. When the time will come, you will do it and that's that.

 

[Astro]

I think that it is useful to look at the effect of the regurgitation on your heart. If the left ventricle volume and left ventricular end-systolic dimension (LVESD) are holding steady then heart is coping fine. If these parameters show a definite pattern of increasing then your heart is dilating in an attempt to compensate for the regurgitation. This could mean that the regurgitation has become severe and close surveillance is required.

I hope that the year that your regurgitation goes from moderate to severe is many years away. It is also possible that stenosis eventually sneaks up as the dominant player.

 

[KatherineA]

Yes, mine did. It was in moderate but slowly working toward serious by the Spring of 2018. In the later part of 2018, I had a several month period that was very stressful, my brother died (brain cancer), I stayed with him for that time, I had a shingles breakout on my upper left arm and the shingles burning sensation in and around my chest the weekend my brother died that stayed awhile.

When I had my next checkup in Spring of 2019, I was serious and definitely so. By early December, the valve was pretty much shot, upgraded to jeez girl you need surgery now, and was extremely rigid.

I’m certain the stress, shingles, family member death all played a part. But, my take is yes, it can happen, given the right (or wrong) circumstances

 

[Astro]

Yes, mine did. It was in moderate but slowly working toward serious by the Spring of 2018. In the later part of 2018, I had a several month period that was very stressful, my brother died (brain cancer), I stayed with him for that time, I had a shingles breakout on my upper left arm and the shingles burning sensation in and around my chest the weekend my brother died that stayed awhile.

When I had my next checkup in Spring of 2019, I was serious and definitely so. By early December, the valve was pretty much shot, upgraded to jeez girl you need surgery now, and was extremely rigid.

I’m certain the stress, shingles, family member death all played a part. But, my take is yes, it can happen, given the right (or wrong) circumstances

What an extremely difficult time.